I used to joke that having this disease was a good news/bad news situation. The good news is that it won't kill you. The bad news is that it won't kill you. Gallows humor. Those of us with ME will get it, I think.
Absolutely! And my partner - who was my caregiver, died suddenly on me too! He was only 30 years old. I miss him so much. He was the humour, the sunshine in my day. And now that he's gone, CFS and isolation is all that I have 😞 Strength and compassion to everybody that's going through this! Seriously... 💪❤️
You took the words right out of my mouth, mate. In fact, most days it feels like worse than dying, 'coz it's like having to suffer through the slowest form of death, but yet never dead, nor living either; more like a zombie than a person.
I know that feeling well. The dramatic reduction in the sensation of "life force", "your life force is drained out of you" is, in my patient-informed opinion, an accurate one that reflects what is happening at the level of cells throughout a CFS/ME patient's body given what Robert Naviaux, MD and others know about Cell Danger Response. The cell adaptations out of "everything's okay, vigorous living mode" and into "DANGER DANGER, shelter in place, turtle-pulled-in-to-the-shell-to-survive-danger" mode result in the dramatic curtailing of the ATP production rate and thus cells are starved for fuel to do more than the bare minimum to survive, resulting in "drained life force" feeling DRAMATICALLY lower cellular vigor/ work capacity for operations, defense and repair. A body made up of cells that are struggling in these ways results in a life of agonizing, bare *existing*, not healthy, vigorously, joyously *living*. . It's a horrific taste of what it's like to live in a body in extreme old age. . There's one silver lining: I'll never take the health of my body's cells for granted ever again. This horrific experience has taught me how vulnerable they are.
Boredom and cabin fever needs to be mentioned….unable to leave your bed, room and house is mentally devastating…..most of us were the type of people to never sit still so it’s an even harder situation to be in….the mind is racing with ideas and things you want to do/complete but the body won’t let you….even on my worse day I feel guilty for lying in bed….I noticed I determined my worth by what I could get done/achieve so doing nothing is torture smh….
I had to learn to be satisfied with who I am, to focus on being, not doing. I could become bitter and focus on my horrible situation, or force myself to find little things to be grateful for...at least I have a bed, I have running water, I have a blanket, etc.
@@cherylallis2458you singlehandedly made my entire day with your comment. Going into month 3 on the bed and today is really bad. I am literally so weak and falling asleep all day. Thank you for reminding me of gratitude. I don't have any friends or family I can call...I will reach out to my son later, but I am so grateful for my bed as well and my sweet cat sleeping next to me. I have so much to do but will try to be kind to myself. Thank you! Feel better soon!🪻🪻🪻🪻🪻
Yes! I feel like you just described ME! I think the guilt is the worst! I have a wonderful husband and family and they try to understand and give me so much grace but I feel so guilty ALL the time!
Cabin fever especially when the weather is nice. After three days of staying inside I have another bunch of errands and then wham down and out again. Same shit every week and doing one errand or two each day still endsupin a crash *sigh*
I have spent so much of my adult life trying to explain this to family and friends who assume I am a lazy person. Now I focus on myself because I was worsening my mental health
I agree with you but, I find the loneliness of losing that closeness I used to have cripples me. I try and look after myself but, at the same time, I actually 'need' them. If only I could ever really get them to understand it.
@@santipolo1963 I need them as well however they will be without me if I don’t care for myself. Love them dearly. But I can’t force someone to understand something they are not interested in. They see the difference in my actions of how I’m taking care of me.
The majority of people I come across, are sadly clueless about the condition. I’ve tried to express myself by saying that ME/fatigue is NOT tiredness, please don’t tell me that I’m tired. This is like saying that someone with depression is a bit fed up. Please, it’s not tiredness it’s unbearable exhaustion. Thank you for posting, this is invaluable 🙏
I stopped calling it "fatigue" a year or 2 ago. That's exactly what this is: "Exhaustion." Everyone has been fatigued at some point - but not everyone has "Chronic Exhaustion" & pain, 24/7.
When someone says it’s tiredness and they are tired too I say: ” oh so you can’t walk to the bathroom either. I can’t shower either” . Shuts them right up after a look of astonishment crosses their face😂
Amen. I am so over people telling me I am lazy and just need to get off the couch. If you’ve never experienced the depth of the daily exhausting while trying to functions in a hyperactive world, people just assume it’s just we need a nap, need to pace better, get to bed earlier etc. But I am over being made fun of and being given suggestions of how to perk up my life.
Hey, Johnny! Sensitivity to smells! Cognitive issues, such as not being able to retrieve words, inability to remember simple things like a toaster, losing your thoughts, not remembering where you left off in the conversation, and complete brain blank!🌻💛
@@peaceswirl Of all my symptoms, even fatigue, MCS, multiple chemical sensitivity, is the worst!! It affects what I eat, smell, ingest, and apply! Medications that I may need, I cannot take. I can’t even go over other people’s houses because most have artificial air fresheners. Now that wearing a mask has become normalized, it has been a blessing.🔅
@@peaceswirl - Yes and the facilitation of widespread sanitization over the past few years has been hellish triggering allergic reactions - there seems to be no escape.
It’s important to know some of the Causes of the fatigue, such as viral overload ( EBV, CMV ,etc) and that fatigue results from physical, mental, and emotional exertion. Talking and social interaction is commonly a source of energy depletion. People with ME suffer with hyper sensitivity of the central nervous system. All stimuli are an assault on our systems and causes a variety of reactions. There are also often issues with the heart, irregular or rapid heart rates. This can result in dizziness, shortness of breath, lack of coordination, blood pressure issues , including low blood pressure and low blood volume. The severity of the fatigue in ME can’t be stressed enough. It is not tiredness. It is a total energy depletion so extreme that it can be hard to draw a breath, move one’s eyes, process a thought. And it can occur very suddenly, as if some plug has been pulled and everything just drains out of you. You just come to a halt, reeling from horrific exhaustion. At one point I felt that each heartbeat was going to use the last ounce of life energy in my body. I didn’t have any reserves. It was so frightening. People who have never experienced this type of total body depletion can’t imagine it’s impact on the psyche and emotions.
Spot on. It is scary, but have discovered that it is a mitochondria dysfunction along with fibromyalgia. I have monthly B12 injections, activated multi B, amino acids and some herbs etc. Good to go to a doctor who is into functional medicine if you can. It seems to be a mitochondria gene defect that causes it. Would be a good place to start if you are able to have the gene tested. It's not cheap, but perhaps insurance companies with the right cover, might cover it.
@@patriciamaclennan5634 hi, Patricia ~ thanks for sharing. I 'Googled' mitochondria + ME/CFS a few days ago, and found a paper that indicated at least some of the medical establishment IS finally beginning to make some connections btwn adult-onset mitochondrial dysfunction and ME/CFS... Tho they haven't, yet, NAMED it as a Syndrome/set of inherited dysfunctions. (Ie: LHON, **) IF you'd like me to send the link, reply and I'll get back with it. I agree, that if you're able to get the mitochondrial (mDNA) test covered by your insurance, do it. It certainly will cast light on at least PART of the health issues you're dealing with... specifically those related to how/where *your* broken energy production is broken. I was fortunate to have decent insurance that covered my test in 2009, bcuz my mother had been in ICU for 6 weeks, and eventually was diagnosed with TOXIC METABOLIC ENCEPHALOPATHY. (I thank God, we DIDN'T heed the Doctors that encouraged us to pull the plug on her! Instead, I asked for the name of a Neurologist they'd want their own Mother's to be seen by, then INSISTED on getting HIS opinion, even though he wasn't "on staff" there.) While Toxic Metabolic Encephalopathy, didn't bring a great prognosis, it gave the Doctors something specific to fight! And, THAT diagnosis pointed my sisters and I towards her/our acquired genetics. (mDNA) [**At the time, I was told they may have a 'name' for our group of disorders within the next 5 years or so. It's been 14!] BTW: a few of the genome/ancestry sites have added mDNA testing to their offerings. I'm not sure of the cost, or how specific these tests are... they may offer an alternative for those whose insurance won't cover. Thanks again for sharing. .. If you haven't already visited MITO.ORG, you might take a look. They have tons of information about energy production disorders. Take care. NB ****
So true. It changes EVERYTHING. Absolutely everything. It's a constant negotiation. No more taking for granted that you can walk around the block, or across a parking lot, let alone clean the whole house (or yourself!) some days. If you aren't familiar with the concept of 'spoons' as an analogy for energy expenditures ~ I came across "spoonies" while searching for coping skills and life management for those who are living with debilitating and chronic illness. I found some helpful information . Especially as a tool when trying to explain to others HOW DIFFERENT things are for me now. Hang in there. NB
I've dealt with ME/CFS for 27 years. I have all of the 20 symptoms you mentioned, plus the other 3 you added at the end. I also suffer from head and neck pressure, face and jaw pain, extreme thirst causing having to urinate often, tinnitus, eye watering, exercise intolerance, heart palpitations and a heavy heartbeat, depression and anxiety, severe periods, dark circles under my eyes (instead of bags), and my newest symptom... body buzzing. No idea WTF that's all about. Soft hugs and love to all dealing with this s**t.
I’m just discovering this disease I have been struggling with symptoms for like 3 years.. I can’t imagine the journey you’ve endured that long 😞 I got checked at the hospital for low iron etc. and basically gave up after that like… well nothing is wrong with me even tho there is. I’m going back to the doctor again
How would you describe the body buzzing? I think you might just have given a name to the sensations i have and which i find utterly difficult to describe...
22. Extreme pressure in the skull. 23. Unexplained anxiety. 24. Extremely hard to think. 25. Symptoms that resemble ADHD 26. Pressure around and behind eyes. 27. Night sweats 28. Mast cell activation syndrome or just sudden sensitivity to food, perfumes, soap etc.
29. Orthostatic Intolerance - is another symptom that doesn't always require POTS or elevated heart rate. I suffer severely from OT, but my heart rate stays within the norm. It's so bad that many of the other symptoms worsen while sitting upright or standing, and the symptoms only reduce when lying down. It's linked to low blood flow in the brain Fatigue , is more than the standard fatigue healthy people have, I'd call M.E. fatigue "Overwhelming profound disabling extreme fatigue and weekness"
30. (I forgot) I sometimes have days-weeks when I feel like my neck or/and back is/are extremely stiff. And sometimes it feels like some of my bones are on the verge of breaking, or like a bulldozer have run over and broken my back into tiny pieces (I’ve broken an ankle before, and it’s the same feeling/pain). 😐 I am also diagnosed with Hypermobile EDS like many others with M.E., so the symptoms might be explained by the hyper mobility (like many of the other symptoms).
Yes and Thank you! On top of the symptoms imagine being doubted and taken for a fake by people around you AND doctors...That's the icing on the cake. The thing with healthy people is it's really hard to imagine something that you have never experienced yourself, so because they naturally tend to compare to what they know they for instance have a hard time separating the "feeling tired" and "debilitating fatigued" and think it's pretty much the same, so they kinda expect you to just push through (and if you don't, you're lazy/not motivated/don't want it enough/don't love them enough).. their brains just cannot grasp it! And we're left feeling lonely and deeply misunderstood. Thank God for people like you who try to spread awareness and make us feel less lonely and more seen! 🙏🤗
Very true. Plus, most of us don’t look sick and every chance we get( a “ good day” comes along) we make a monumental effort to do all we can in spite of our overwhelming symptoms. So we are judged by that one day when people see us acting “ normal”. They assume that the rest of the time we are taking being sick. They don’t see the PEM we suffer after exertion.
Does anyone else get a sudden onset of fear that they are going to fall over and have anxiety about being able to be home so you can just collapse? I feel like the battery starts to drain and I have this urgency to find a soft spot to land.
For years I have felt so tired I would want to throw up, vertigo, nausea, yep bathroom problems, yep migraines and headaches, yep insomnia, muscle pain, rashes, yes light and sound sensitivity, had to wear bi-focals since age20, have blurred vision, yes joint pain, yep unrefreshed sleep, yes heat intolerance, yes medication sensitivity and chemical sensitivity, yes brain fog, light headed I am now 66 and been dealing with this since I was a teenager and people just don't understand what I am talking about, seeing this video a year after it was posted, I am thankful I found it, God Bless to everyone who sees my post
Your symptoms sound a lot like my grandma. She was diagnosed with fibromyalgia but the big things she struggled with was sensitivity to smell and to medication side effects. She was also sensitive to cold and hot. My family wasn't always understanding but I was pretty much attuned to her symptoms. I could tell when she was pretending to be ok. They always said all she did was complain but what else is there to do when you are that miserable all the time and no one believes you 😢
I can't express enough how I feel for your plight. It's beyond my ability to understand how most of your adult life has been lost, and the torture you've endured. I'm so sorry for your loss. I hope at least you've had someone in your life to help.
God bless you! I have 17 out of 20 symptoms that this man describes! I’ve been researching my ailment for the last several years after I had covid 2 times and again after the second vax booster. It laid me up in bed for almost a week. Now I’m left with the symptoms you discuss hare! That you so very much for validating me and my backing me up!!!!!
What wasn’t mentioned is feeling so sick a healthy person would go to the ER feeling like they were dying. Many people with ME/CFS myself included say it feels like your body is being poisoned.
I sincerely thought I had cancer , I was so convinced of it . I thought it would be terrible to just die and not have told my family, so I did. My dad went into a coma shortly after that. Its only when I didnt die and nothing changed that I began to accept that I might be wrong. I didnt get tests because I havent seen doctors for years because I gave up on them. I wouldnt want their treatment of chemo anyway . So thats why doctors werent /arent part of the picture.
Funny you mention going to the ER because I did just that! When this illness first began I was a very healthy/fit young person. After a mild cold/flu type illness I was struck with an unrelenting level of fatigue and muscle weakness that I had never experienced. It just would not alleviate and I was struggling to attend a couple college classes or even just hang out with friends. I remember thinking for sure the ER docs were going to tell me I had leukemia or some deficiency, but they couldn’t find anything wrong and told me to follow up with my primary dr. Well here we are 15 years later. Still no answers, still suffering and the worst of it all is the continual dismissal from drs and family.
@@smakkdat That is the worst when even your doctor doesn't want to believe what you are feeling and put you through a myriad of tests that come back normal, so frustrating!!
It helped me to stop getting highlights in my hair & no more pedicures. Just going into a salon felt like I was being poisoned. Went through all my toiletries, make up, cleaning products, etc & replaced with natural (no synthetic scents, etc). I don’t feel like I’m being poisoned anymore but I am highly sensitive to all this stuff if I go to someone’s house or a store, I can’t stand all the smells; Highly Sensitive Person now, LOL.
I had that reaction from a dr, she ran an ana titer and then after it was positive dismissed it as x% of positive have no symptoms at all....like then why did you order it and I must have had symptoms fir it to be ordered in the first place since you need icd 9 codes when ordering tests you can't test for no reason. She ended up leaving the clinic, 5 years ago still no new primary anyone I have tried is worse and I get such anxiety and fear that pushes me away from going in but I can't work and without documentation ssi will deny me. The pain clinic I go to cut my pain meds because that is their goal no matter who the patient is or what is wrong. My trauma therapist left the clinic, no ptsd therapy since just a young girl still working on licensing who smiled while asking me to walk her through my panic attacks. Now no one. My body pain I see no one as I go to pain clinic for a work injury 10 years old. I had been improving then got worse last few years...only thing I do not have is swollen glands, at least never said by a dr. But because symptoms have come at different times and not all at once they are treated as all separate and not all from same issue. Like migraines have been here 20 years, body pain after back injury but 2017 I was told fibromyalgia because my back hurt when he touched tender points. And he basically said don't bother trying to get social security he does not help. We are going to be homeless and I can't work, I wish I could. Grocery shopping for the bulk of the month, food stamps, I was in bed for 3 days I could not move my ankles. I went to the bathroom and I made my don a sandwich for dinner, he makes a hot pocket when he wakes up. Ut because of that I had food thrown out because I never did the work to make chicken and stuff for our salads and I forgot I had a slice of cake for my son in fridge out of sight out of mind. I lose track of time now. I can type a reply to a post on UA-cam or fb and an hour went by...like what. I can't get my home clean. With my ex arrested and no contact order, he was my caregiver they never replaced him or helped with my son. My ex threatened if I kicked him out i would never get help from anyone and I swear he had to have. My case manager can't even order a bus card. She left a voicemail she needed me permission for her to order it...I did that in January she never ordered a replacement for my broken cane like she said she would. My son has his assessment needed, next 2 weeks, fir renewal. I am going to ask her how I get myself switched to a new company and how to find out what communications he had. I suspect plenty, my last assessment said something about angry outbursts, not true but my ex was trying to gaslight me and projected his anger, yet when he raged at me I never touched him never yelled never threw anything. I stayed calm. And called 911 while so afraid. But now I have no help and we are suffering. Over 3 months lunchmeat sandwiches for dinner every night. Nothing cooked. I get dizzy heart rate increases I sweat, from several minutes standing still. My ex used the new stool I bought for me to be in kitchen, put it together, thank you, then used it at his work table, hey wait a minute, then cracked the seat in half threw it out, never replaced. Card table for my son and I to eat at, thrown out as he wanted to eat alone st his work table away from my son, he would try to fight with my son physically. Did once in beginning used the he was trauma triggered excuse, but obviously not looking back as he would bait my don to swing at him so he could hit back. I blocked them every time but it took a toll. I am better today than the day after his arrest. But not doing well. Insomnia again and this morning I can't go back to bed. I somehow need to stay awake get the meals on wheels delivery bring it to my neighbors, my freezer has zero room, and then give my son a very needed bath, I need one but we don't get both on same day. That was the day of the fight. He expected me to shower cut my sons hair give him a bath all 3 on same day. Without help he got paid to help me. He never cleaned anything beyond his work area. I need to clean fir his cadi waiver appt. I feel drained of life, energy chi, can't describe. And my pain with less pain medication, because he says my brain will take over.
People don't understand how heavy this fatigue is..to it feels like concrete has been poured over my head, then I have been run over by the concrete truck. Then when I am lying on the floor, trying to get up, I feel like someone has come along and sedated me... i spend the day bed bound, like a zombie, just looking up at the ceiling, unable to sleep. Use to spend a lot of time thinking about suicide. Pray for a medical break through. Gurmail
Yes exactly!!! It’s not just “being tired” it’s like when you’ve had a high fever with the flu and the whole body weakness you get where you can barely get up. U r not alone ❤
When i share such thoughts they label me depressed ..they can't understand how does it feel like to stay on bad for years where your frnds outside enjoying life all u do is just watch them and wish one day i could be ok .....sometimes i wish if they get this problem for one day they will understand and make world a better place for us
I’ve had most of these symptoms for years. I’m 65 and am tired of trying to get a doctor to believe/acknowledge the seriousness of my symptoms and the impact they’ve had on my life. I’m sick of fighting it.
I so relate. Minimum amount of meds as possible and docs just cannot do much about this...hard fact. I'm just on repeat...and feel crazy. I am tired of it. Tired of explaining and getting no feedback.
I have had long covid for 2 years and I have all of these symptoms daily including the extras at the end! I also get muscle jerks and twitches, hoarse Voice and swallowing issues, apnoea, severe tinnitus, foot pain, spine pain, pins and needles and numbness, like electricity in hands and feet, altered mood for obvious reasons. I could go on..I can’t believe people have suffered with this for decades and there’s no help, it’s beyond horrific!
Ya its been a rough road for many with ME/CFS as you seem to understand (sorry to hear you are unwell). Its starting to look like long covid is in fact M.E. Pretty crazy.
So sorry, but so interesting to compare notes. I started with (presumed) long covid in March 2020. Fatigue has been primary, but as with you, electric/tingling skin, what I call microspasms, tinnitus, pins/needles, and VOCAL! I've been largely without my voice for 2.5 years now - very hard to function in the world without speech. Been to 2 ENTs and they just say "atrophy, do vocal therapy". But that triggers everything else - a vicious cycle! And my list is longer, too, but this is enough. Keep fighting it, one day at a time - you're not alone!
I’m so sorry to hear this. I also have the symptoms you just mentioned. Many of the neurological symptoms started the night of my 2nd C-VAX. It sure is a battle.
@danielscheerer3032 HI there. I was also having trouble with speech and shortness of breath. I went to local ER and ENT doctor diagnosed me with VOCAL CORD DYSFUNCTION and gave me prescription for Albuterol inhaler with Nebulizer. I can use that every 4 hours when I am short of breath and have voice changes or hoarseness.
I've been ill since 2019. Alternative doctor said it's coming from my kidneys - adrenal fatigue. it's been horrific. I think adrenal fatigue, ME, CFS and fibromyalgia are basically the same thing. Decades of physical trauma and psychological trauma caused this debilitating illness for me. Many times I've felt like I was dying and wished it. it's been a rollercoaster of horribleness where people think you're imagining it all. So depressing. I'm 77 now and praying I'll have some good years before I pass on. I used to be a gardener but haven't been able to even dig a hole to plant a bulb for over 6 years. I was getting acupuncture early on which helped but covid mandates finished all that. it's a rollercoaster and I wonder if I'll ever get right again. My advice - get STRESS out of your life.
The muscle spasms are enraging! I have to rub ibuprofen gel into my legs to get any relief. The stomach pain has been so bad that I convinced myself that death was imminent and thought that it would be a relief.
The worst is feeling judged by family/coworkers for limiting your activities because "you look like you're doing fine" or "I don't see any of those symptoms." My personal favorite is "All of your tests come back normal."
The "all of your test come back normal" immidiately made me want to flip a table. Im going through this right now. But looking into ME/CFS and hearing others experiences make me feel a lot less alone. And hopefully that more attention will be brought to the diagnosis and more research/funding/relief for those who suffer.
I literally just wanted to cry!! You mentioned everything I have been suffering and trying to deal with on a daily basis… I kept thinking it’s a serious illness I’m having as I no longer feel normal :(
It is a serious illness, have you been drinking the kool aid? Its worse than cancer because cancer only lasts for a few months or a couple of years and then death frees the victim from their suffering.
Always remember how important it is to speak to a doctor and get other possible causes ruled out. Many of these symptoms could also indicate other conditions which might be treatable.
Ì thought I had it but I realized I had adult Adhd and it was making me very tired focusing and doing a lot of mundane tasks and looking for dopamine all the time. If you have Mental fatigue please check for something like adhd.. I now take small does of medication daily and feel fine.
3 years of ME/CFS here from a covid infection. The tachycardia and very weird heart rate issues have been my primary problem. All my tests show that I have a perfectly healthy heart but man this illness makes you feel like you are dying some days.
Thank you for this! I have been sick for over 30 years; most of the doctors I’ve been to have not tied all the various symptoms together and you can add “chronic frustration” to the list!
No depression/anxiety are not symptoms of ME/CFS. Those two are psychiatric. Fatigue, pain, can wear you down and get you into depression, but so can battling any long term health condition. Anxiety is psychiatric. If you are having then one of two possibilities, you have CFS AND a psychiatric issue or your problem is psychiatric.
@@FallenJaneProductions tell me about it when they cant find a reason for symptoms they say its all in my head. Anxiety. Who doesnt have it? Does it mean we should take antidepressants despite the risks and whars crazy is they dont know what tests to do to find out whats wrong.
@@SarahNelsonWA anxiety and depression are the new trendy answers drs have when they cant figure out whats wrong. Its like u have to ask and tell them what to do. Nowadays patients research and find answers thats drs have no idea about. Then they blame us for googling and reading.
It's NOT that I want to die, however having Severe ME/CFS for over 20 years, sometimes death does seem like the only way out, or a better option. As I have grown older it's gotten worse. Severe neuropathy, burning, electrical shocks. I am too exhausted to name the serious symptoms I face everyday. Before this diagnosis I was a dancer, in the ocean all the time etc.That person is gone. Thank God I have an amazing Service Dog 🐕 Bless everyone dealing with this dreaded Illness. Thanks for you and your Channel
I had the severe neuropathy as well. Antivirals and B12 shots helped, but a game changer was Hako-Med treatments. I did 20. I am hardly ever in pain at all. Just annoying level when the weather changes. My neuropathy had traveled from feet and hands throughout my body I to my face and even my tongue. MD refused to prescribe ANY pain med. So blessed that a friend of mine told me about Hako-Med. It was covered by insurance at a different doctor's office near me.
@@cherylallis2458 hey Cheryl, thanks for your reply. Severe Neuropathy SUCKS. I GOT IT IN MY MOUTH. HAD TO HAVE AfTER 3 years, All my teeth removed at the root. Sorry you have Neuropathy. It can be crippling for sure. WHAT IS HAKO MED? Thanks
THANK YOU! THANK YOU!! THANK YOU!!! First of all for your lovely, calm, gentle voice and economy of words!!! So many people who say they are experts on ME/CFS produce videos on the subject where they are loud, fast speaking and they talk for too long with information overload!!! You, however, show your real understanding of the disease and have true empathy and compassion with your audience. This is a great video to give to our families, friends & acquaintances. If I had a dollar for every time someone responded to me when I tell them that I have Chronic Fatigue syndrome, by saying that they felt tired too, I'd be extremely rich by now!!! I wish someone in the field could come up with a better simple name for this life-altering illness. Myalgic Enchephalomylitis is too complicated and it still doesn't cover all that the disease involves. Sending my love to you and all fellow-sufferers! 🙏🏼❤️🙏🏼🕊
It is now called SEID--Systemic Exertional Intolerance Disease. When I tell people I have this they are like, Wow! I've never heard of that. I tell them it's real bad, and they don't argue with me like when I say chronic fatigue.
It could be worse. I also am going blind ,( Im an artist and designer ), and I live with a complete tosser and cant do anything about that. He is a covert narcissist . Boundaries are very triggering for him so its a toss up between looking after myself and not being abused. Because of him, My body constantly makes lots of cortisol.and adrenaline and my heart races. It began with occassional episodes but since a hear its been constant. My body is exactly as one would be if you were hiding in a cupbpoard from someone looking for you to kill you.
With you 100% on that buddy! I'm 69yrs old, so - of course - I also have prostitis AND a bloody hernia to go along with the ME sh*t (ME since 1988). My heart goes out to those having to fight/cope with this horror during their teens and 20s! I used to follow a well known YT channel 'Physics Girl'... an amazing teacher who's energy for her work made her uploads something worth watching (if you're into physics). Then she went quiet. She is now completely bed-bound, blindfolded and is fed through a tube... these should be her peak years... heart-breaking...🥺 so, if you have time please pop over and give her some love. Her family post updates regularly... WE are the only folks who have an idea what her life is like ❤.
As a former healthy person, I can say that healthy people CAN NOT imagine living with this illness. I have even had a person with a chronic illness tell me that they were jealous that I was lying on the couch because they wished they could be on the couch! I get it that they probably should have been on the couch because of how they were feeling, but, I was wishing I could be able to accomplish even 10 or 10% of what that person accomplished that day.
Heard very similar remarks. Now I don’t really discuss details about ME/FM with most people…They just cannot wrap their minds around this illness. So, by not talking about this illness, I’ve chosen not to be confronted with ignorant insensitivity and that’s working much better for me. 😊
Them: 2019: "Oh, you're so lucky, you get to go home all the time!" 2020: "I don't want to stay home all the time because of some sickness!" Us: *eyeroll*
I'm busy congratulating myself on not getting migraines or headaches. Or IBS. And nausea only affects me as a result of vertigo. So 17 out of 20 for much of the time. (Plus my own extra ones.) After 12 years and eventually retiring, I've reached a fairly stable status quo and now concentrate on my mood and fending off depression. Good luck to us all!
20+ years of that here. Misdiagnosed, ignored, rejected repeatedly by social security. Total disregard by laying on the guilt, extra unnescessary stress, blame etc etc. The only reason I'm still here is my children.
The worst part is its invisible. If you have cancer you see it, if you break a bone you have a cast, with this there is no outward signs. You can look perfectly healthy. Unfortunately, I have this combined with lymphedema so I just look fat and lazy. I can go 48 hours without sleeping. I already have hyperextending joints from my lymphedema condition so joint pain is everyday. The last part is the emotional strain on yourself because you feel like you are letting everyone down because you can’t do the things that need to be done. My husband use to travel a lot for work (he was gone 3/4 days every week for most of the year) so I was like a single parent for a long time. After my third child was born I slowly began losing my ability to do things. I can’t clean my house, I can’t grocery shop, I can’t even do stairs to do the laundry. I use to plan great birthday parties for my kids, now I can barely organize a party at a kid’s placed designed to do everything for you. It breaks my heart to see the strain I put on my husband and the disappointment on my kids faces when I say no I can’t do that.
Not every cancer is visible, though. Neuroendocrine Tumors dont let you look ill, but fatigue, diarrhea, heart issues, flushing, immune system issues are a regular theme for someone with NET cancer.
I understand this completely. I feel like I constantly let everyone down. My husband works all the time too and I have no other family to help me. I have 3 kids as well, which 2 are older but they also have health issues which I have to suck up mine for them and be there for them. I push myself more than anyone could know. My 17 yo just graduated and going to graduation plus having her a get together afterwards did me in more than it should've. I'm still trying to recover from it. No one gets it til they get it....
@@UnderHisWings0322 I hear you. My eldest is graduating high school in a few weeks and I don’t know how I’m going to do it. The hardest part for me is hearing my kids say I know you can’t come because you’re sick but it would be nice if you could. Breaks my heart every time I have to say I can’t make it for something.
25 years now with M.E / CFS Bed Bound also suffer Fibromyalgia , R.A , Psoriasis , Pots , IBS , also Major Depression , and Anxiety , O.C.D , C.P.T.S.D , and that is just some of the main ones , oh yes Hashimoto's disease ... if you have a positive and caring family unit or friends you are so very lucky , unfortunatly i do not , so i am pretty much on my own . My heart goes out to all of us who suffer this Horrendouse illness , know you are worthy and others like you are out here and channels like this are so very helpful in so many ways when you are alone and we can hear and understand others whispers .... yes i ✔ to all symptoms you mentioned but not the hair loss , my pic was back 10 years ago b4 the worst of it smashed me into the wall and took everything .... if i had only knew back prior when i was first diagnosed to rest , maybe just maybe it could have helped , ...much love and understanding to all xo from Kat in Australia .... p.s .. i cannot always comment due to my conditions but i watch all videos and thank you so much for your channel ...🛌🕶🧸❤
Katrin,Although we are about 10,000 miles apart we have alot of similarities,alongside a plethora of other illnesses.Also,i have no family or friends anymore(as soon as anyone realises how badly the M.E symptoms are they disappear,Female and male )so at least it shows the calibre of a person and gives me more energy to devote to myself.There's always an upside.Also,We have our own M.E family in this excellent channel! I think finding something you love,makes you happy and are passionate about helps;no matter how small.Hope you're as well as can be.You are not alone .Much love from the U.K.
My heart goes out to you. Thank you for your lovely, supportive message. We are a unique community, for sure. We feel one another's pain, and we empathize .. Because we deal with and struggle to manage SO many things the rest of the world takes for granted ~ we have compassion for one another. Sometimes I doubt compassion is even on the rest of the world's 'radar', and it makes me sad. I'd take my old abilities back in a heartbeat, but I feel blessed to have found that there ARE still caring people out there. PEOPLE like you! For that, I am grateful. Hang in there. 🤗
If only my family understood. I am almost a hermit because I hate having to out alone because of the vertigo/and slowness of movement. I often feel like a drunken sailor tottering from one side of the path to another. Cannot walk a straight line. Wheeling a shopping trolley can feel as if the wheels are stuck and the trolly filled with concrete. Almost impossible to push. 1 good positive day can lead to 3 or 4 down days with the need to sleep during the day just to get by. Not doing anything.
@estherdavidson7959 Please also get your B12 checked as what you said is very similar symptoms to low B12 which I had and you could have that along side ME/CFS which will make it worse. ✌🏼
I ve had ME for 30 years, i relate to all these symptoms and more. I have POTs and Fibro. Its been a difficult journey and main barrier was friends and family not understanding. Ive lost friends and my marriage as always being poorly. Its a depressing illness. But we battle on. I ve found my baseline now and just pace myself to living within my parameter. Its not easy, and its terribly boring. But we have to carry on the best way we can. Hold in there, you're not alone. Be thankful for the good days and when in a CRASH, remember those good days will come again. x
You have mentioned a lot, but there are many more. I would add very heavy digestions, hartburn, belly inflamation, bloating. Very dry eyes and mouth, tinnitus ( acute noise inside your ears). We often can't remember because there are hundreds. But I'm sorry to tell you society don't mind that at all. Even doctors don't very much either.
Thank you for this video, I've been re-watching to convince myself I'm not alone or responsible for this dreadful shitty mess of a brain/body I inhabit. The 'outside' world weighs so heavily on you when you feel if they see you looking okay, somehow you must be. Or somehow you can be. But more often than not you simply can't. Like you can't make the grade. That pressure - that's where the guilt starts. It takes a very rare, special, empathetic kind of person to want to understand and can, and thankfully there are one or two in my life. Keep up the good work.
I get palpitations and high blood pressure! Also the complete inability to regulate my body temperature. I’m either boiling hot or cold. I wear fluffy socks year round now because my feet are usually alway FREEZING cold. You explained all of these symptoms so well. I have been looking for something to share with my new manager at work and I think this is very informative and will be helpful. So, thank you!
i have every single one of those symptoms, every single day. i was diagnosed with fm about 20 years ago but over time i know my problem is more cfs. i plan my one trip per week to the store and one visit to church per week and feel so accomplished when i've made those appts.! and yes, it is currently 3:10 am and here i am ☺
Calling it Post-viral syndrome would help to give it more context, allow people to understand its origin and reduce the skepticism and disbelief that the word fatigue seems to engender.
I am not sure that works as, some sufferers may suffer and have not had any virus infection, that is just one of many possible triggers. Certainly I do not like CFS at all as a descriptive and prefer ME for no other reason than it sounds more medical. The best banner headline for it is that it is a neurological condition, a problem with the human messaging centre.
@@santipolo1963 We're trying to solve a PR problem here - and an unpronouncable scientific name only feeds the perception that that the disorder is a fabrication trying to dress itself up. And I suspect that ME/CFS/PVS is only brought on by viral infections. Don't forget that not all viral infections trigger manifest immune reactions.
@@santipolo1963Indeed. Post-viral for many but also causes may include exposure to toxic substances (mold being one), highly traumatic events like a car accident, brain injuries, etc. A neuro-immune condition.
TOOTH LOSS! is common amongst us! I'm enduring (gratefully) a full mouth restoration. 2 years into it & I've only gotten my upper finished. Now for the bottoms. Soooooo painful. Y'all be mindful of your dental health. Chronic dry mouth will TAKE your teeth! If dry mouth is destroying your teeth, don't spend thousands trying to save them. I did that. After you pay for 3 crowns & still lose the tooth ... you could've paid for an implant. It's a grieving process. With a side of guilt. You blame yourself for your failing teeth. As if you never brushed. But, if you're like me ... I took care of my teeth! And it seemed the harder I tried to brush & floss well, my teeth just started snapping off at the gumline anyway. Your smile is 1/3 of your face! So, yeah! Healthy people? ... try having a third of your FACE amputated! ... and all the other miserable symptoms we survive every day. Walk a week in these shoes! Try it on for size. You'll think twice about passing the "hypochondriac" judgment on us.
Thank you for mentioning dry mouth and its effect on teeth. My dr was concerned I was developing Sjogren’s Syndrome. I’ve had some of mine crack vertically for no apparent reason. So odd.
I wondered how this was related, and if it was. I too have always looked after my teeth. For years ive been trying anything and everything. " this really might work, worth a try! " . I too have had three crack vertically. Indeed... The grief, I wasnt expecting that. Its exactly the experience. I dont have a social life anymore, at all. Because of my embarassment. I wont get fhem fixed because Everything ive done to make anything better has done the opposite. The last visit was fo get a bridge thing. It broke two of my teeth. And....the nexr dentist was audibly disgusted at the state of my teeth. I should have sued the beeach, the technician was a witness, but Id rather just go to sleep.
Wow- I didn’t think about my cranial pressure as a symptom/ I was starting to think dysautonomia or some sort of giant cell arthritis…. Really this makes one sound like a hypochondriac, but it is a whole constellation of symptoms that are robbing us of our lives and of course, you want to figur it out and make the best you can
Another part of this condition that makes life hard is having to sit in a dentist's chair, or long wait times at a doctor's office, or waiting for exams, and hoping not to have a nausea/dizzy spell during the wait. Worst fear is getting any one of the above symptoms and being trapped in a room full of people.
My heart goes out to the people dealing with this illness. I stumbled onto this video after dealing with fatigue from COVID-19. I can't imagine having this fatigue for more than a few weeks. I hope they find a treatment for you all soon.
I'm sorry about my beautiful mom, who's struggling with this sickness. I didn't first understand how she feels when she's not well but now I do. May jehovah bring the new kingdom so we won't have to keep suffering. Amen!
YES, you named them and I've had most of them I'm 62 now and got ill around age 12, went down hard at age 19. Bless you and thank you for even making us feel seen. All the best to you as you navigate and recover to the fullest extent possible and same to everyone here!
I was diagnosed 14 years ago but my M.E. / discontinuation syndrome was triggered by a rapid anti depressant withdrawal and reinstatement. I get a really weird symptom where my nose becomes stuffy like its acting like I have a cold if I over do it.(I've been told this is my mast cells acting like they're under threat) However that is one of the easiest symptoms to deal with! I use a mobility scooter and e bike. Anti depressants ruined my life and mobility. 2 hours meditation a day really helps, eating clean and pacing but I'm not cured by any means. Its absolutely relentless to manage. Big love from Scotland
Thank you! I have a strong opinion that my ME was triggered by SSRI withdrawal, and I did it over a six month period. It was Paxil, known to have among the worse withdrawal symptoms, and I felt like I was going crazy. Always good to hear someone else with a similar situation. Blessings on your recovery!
Yes, psych drug side effects triggered my ME and withdrawals finished me off. Not sure I will ever recover until I have recovered from the chemical neurotoxin damage.
Story of my life. All 20…All the time. It’s… a lot. I don’t have a life outside the home anymore. Nor do I have the brain power to imagine one. I’ve lost so many friends bcuz I’m constantly breaking plans. So grateful for my husband tho, he is super supportive and kind. Don’t know what I’d do without his help. Hold onto those who love you. Even if it’s just your cat. They make great snuggle buddies.
Let me know if my timing to comment is not good. I have allot of these symptoms for at least 11 years now - fatigued every minute, all the time slight dizziness that gets worse with fatigue until I'm close to passing out, erratic sleep & sleeping problems, depression/anxiety, migraines often (20 yrs), tightness (face, neck, shoulders), skin breaks easily, gastrointestinal issues, etc. I'm past 65. I've had no social life except for 1 person for 10-15 years. If I take a shower, that's all my energy for the day. I'm especially unhappy with my location & city but also unhappy with my life (my no life) in general. I have tons of compassion for anyone suffering this condition. I must have the help of a wheelchair to go out - my 1 person in my life pushes me!
Have every single symptom then some. Feels like rigor mortis is setting in. Idk why I'm still alive or how feeling so weak like I'm going to die. Told your somatic and sent to a mental health facility. Nobody believes all these symptoms! Just waiting on the grim reaper to show up and take me out of my misery. I have absolutely NO LIFE left in me to keep fighting something no one See's feels or believes except the people SUFFERING! Feels like a terminal cancer you can't even get dignity to die in peace to help! SAD WORLD!
Had this illness since I was pretty young, about 11. My symptoms: constantly tired, sleep doesn't make it better, I get 7-8 hours then still need a 3-4 hour nap during most days, getting out of bed is disproportionately difficult.. Driving is somewhat dangerous due to intense drowsiness. Stress makes ME/CFS symptoms worse. More than light exercise makes it worse for a couple days. All chores are daunting. Moderately sore muscles. Dizziness, sometimes after getting up but sometimes completely randomly even when sitting. On good days I can do HALF of what normal people can do, on a bad day about 10%. Can't work consistently, income takes a huge hit. Doctors don't believe me about all this, said to get trauma therapy lol. I'm not making this up I just want it to stop. Definitely eczema stuff. Some joint issues. Blurriness in vision, dissociation too contributed to by stress and tiredness. Also depressive symptoms. On top of dealing with life... just normal life is hard. But this? F*** that. !!! BRAIN FOG !!! Very intense. I can't do school and it's breaking me. I can't get an education, been tryna learn animation since 2016 without luck. My brain shuts down when I study. It's not fair 😢 my life is taken by something I can't control even with massive effort... this is stealing my life and there's no cure. I honestly get kermit sauciside desires over this all the time. I may cave eventually. I'm begging for mercy at this point... 😭🥺😔 If I had one wish of a gini I'd cure this no hesitation.
I know, it's totally shite way to live. Hang in there though - there has been a very rapid uptick in the science on this and there should be some new approaches coming soon (ish).
@aliceandrea7863 please don’t give up! I’ve only had this for 7 years but it is so hard sometimes. I can’t even get a diagnosis but I’ve been learning how some people change their diet and it might get better. I’m starting tomorrow with a CFS diet which is mostly healthy eating with no processed foods and no sugar. Maybe we can start together?
This is what I have. I am 60 years old and I have every symptom every hour of the day. It’s really hard that my older children do not understand that when I say I don’t wanna go outside it’s not because I don’t wanna enjoy the weather it’s because I can’t enjoy the weather anymore. I am just too exhausted to even try. What makes it even worse is that I cannot longer work, so the bills are piling up on me. my rent is behind and the food is just too expensive to even buy. My life is just so so hard right now. I have just recluses myself because this disease is so hard to live with.
You just described me too, and so sorry you and all of us are going through this. This condition doesn't mix well with our peers (in my 60's) who are out traveling, doing hobbies, enjoying retirement. Most of my family are healthy and have energy that I can't even imagine. Life with this is a day-to-day existence, not being able to plan anything enjoyable because it usually means we'll pay dearly for even thinking about making plans. My couch is my friend. I'm trying to find solace in the simple things, like hearing birds sing - anyone who hears me say this thinks I'm 'depressed' - well no wonder we're depressed, they'd be too if they had this. Praying there is a simple cure to ME/CFS and soon.
Thanks for this. I was finally diagnosed with ME/CFS over 30 years ago after going back and forth to doctors, some of whom thought it was all imagined. Being treated as a hypochondriac by certain members of the medical profession was hard to bear. It's been a roller-coaster ride over the years and I have mild to moderate symptoms compared to many, yet even now at the age of 68 I find life is difficult at times and managing my life to minimise the 'crashes' I suffer from time to time is really very depressing. Sometimes I can live a fairly normal life, but at other times just about anything I do makes the symptoms worse. The odd thing is that if I have something like a cold or (as happened last year) shingles, the ME symptoms are less severe. One specialist I saw about that said that ME/CFS is caused by the immune system being in 'panic overdrive mode', whereas if it's dealing with an infection, it tends to concentrate on that and the ME symptoms actually seem less severe. But I always get 'kick-back' from the ME afterwards. On the plus side I initially recovered enough eventually to get back to work part-time and later did a degree and taught full/part-time for 10 years. My partner and I are fortunate enough to be OK financially and both retired early so that helped me to manage my life better.
Yeah that is totally me - the experience of infections and the kick-back. Also completely sympathise with the bit about being judged a hypochondriac - very depressing. Good for you for keeping on keeping on and doing stuff with your life. I became a painter which works well with the altered life rhythms.
Whooow thank you sooo much for your comment, this is something I noticed within myself but I thought I was crazy because all the docters and medical experts look like they have seen a ghost if I seek help for my symptoms, what you just said helps me so much in validating my own experience in this world where there is no recognition for it.
Ive had ME for years ..but before doctor told me what was wrong i cried. I thought i had cancer .ive has reynards since age 5 ...?then i started getting insomnia at age 16 then ibs ...crippling pain .watching this has been a relief .but still in the uk...there is no help .so thank you for this
I've never heard of this! I've had health issues since I was a kid. I was always tired but as I got older, it got very bad. I have fibro, sjogens, gastro issues and was just diagnosed with EDS. My daughter was diagnosed a few years back. My joints and spine are shot. BUT the exhaustion. I can't move. I worked full time and slept until 3pm on my 2 days off. Holy moly! I have EVERY symptom you've listed. I went on disability in 2011. Now at 66, I'm in horrible pain. They cut back on my pain meds after the "crisis". I was just hospitalized with CHS after being awfully sick for days. I just got new glasses and my eye sight gets blurry. This is crazy that no doctor has mentioned this. The muscle pain, under scapula pain is bad. I wierd rashes out of nowhere. Thank you for this. ❤ ❤
What I did was I forced myself to start cycling even when exhausted. First a mile, then two, then five, every other day. Eventually 10 but only on flat ground. Then 8 + plus walk 4 miles, then another 8 back home. Eventually in a year I could do it every day. But it took a year and doing it religiously every other day. Still tired afterwards but not as tired. It takes persistence for even a little improvement. I also believe sweating somehow helps. On thing about cycling it wakes you up, even only for a few hours.
Not deconditioned! ME, severe asthma and COPD... all finally diagnosed after I went on permanent and total disability. The fatigue was attributed to dealing with my orthopedic dysplasias from birth. At least I was believed because of them...
Some more symptoms: muscle spasms (like a really severe cramp that loosens and tightens really quickly)- these can go on from 1 minute to 20-30 minutes. They are excruciatingly painful. The first time 1 had one I actually thought I was dying. I was 19. Any muscle can get this, even the tongue. Extreme weakness. At my worst, I couldn’t even lift a spoon. Uncontrollable shaking- when I first got sick, this would happen when I was pushing myself. It would start as a small, unobtrusive shake and sometimes get quite extreme and obvious.
You laid it all out perfectly. I’ve had CFSME since the 80s and was officially dx in 2004. Even decades later it never ceases to amaze me what a serious illness this is.
in the UK it was known as Yuppy flu and that label has stuck to this day even if folk don't know the term. In the 80's it was associated with certain lifestyle choices and, of course, laziness.
Thanks for sharing, I have a friend with ME and I'm trying to learn how to support as best I can. I have MS so I understand some of what your saying. Keep fighting soldier 🙂
You know, just acknowledging the reality is enough and maybe laughing along to the brain fog, sharing the coffee making and so on. To me, feeling like we are in this together is the best help ever.
This sounds like me everyday, and I've been going to several doctors and specialists for over 7 years without diagnosis other than fibromyalgic pain, restless leg, peripheral neuropathy, muscle tightness, cluster headaches. Thankyou for posting this video.
my eyeballs are bulging because I have been seeking answers to my crazy symptoms. I have every single one that you listed and I NEVER HEARD OF M.E. BEFORE THIS VIDEO!!! I WILL LOOK MORE INTO IT. THANK YOU FOR YOUR VIDEO!
I have had ME for decades. No one seems to understand. I really appreciate your desire to educate, as well as your ability to not only list the symptoms, but also your sensitivity in conveying how it effects our social life and that we DONT WANT to lose our ability to live a life! This is not a CHOICE! Thank you for this video, I felt your empathy for M.E. sufferers.
Wait wait wait. You telling me that this isn't normal? And I'm not grumping for no reason? And I'm not just super lazy and should do something with my life, go on fresh air do something? I just want tro cry now. I've been sleeping almost all day for the last 4 days couse I can't deal with the fatigue anymore. I've always felt tired no matter what and had a lot of this syptoms but now I feel like I'm on the edge of exhaustion. So I started to looking for tips or supplements and happen to found this video. I don't know what top do, I don't know what to think. Will do more research for sure. Thank you for talking about this
I've been on a medical rollercoaster for 2 years trying to get a diagnosis, its been FMS, CFS, Sjogren's, not CFS, AL IN MY HEAD, CSS, and finally last week...hey its ME/CFS! I have been left to fall through the broken healthcare system cracks, I have had to FIGHT for care, to be be heard, had family members tell me its just mind over matter, take some vitamins, lose weight, get some exercise - I carefully manage all of these things and try not to let stuff overwhelm me. Its a tough ride at this carnival for sure. Thanks for your videos, ive been watching them for a while. On the plus I am feeling much improved ATM, and have been educating myself on how to care for myself how to fight for myself, and how to listen to myself, thanks for all your hard work x
@@fight4me747 Thanks well im feeling ok for now at least, but I had fatigue in my younger years after EBV too, so it will likely come back again at some point, sigh. The last doc said he thinks its multi-factoral which it probably is, so every little bit I can do to help my system is a step in the right direction, like if you have a bunch of things that are a little out of whack - they can all add up to make you a lot out of whack - if that makes sense. I also have hashimotos so its sort of hard to know whats causing what sometimes, but 3 years ago I felt like I was litterally dieing! its been a long and excruciating slow crawl back to the point where I can function (if i take it easy) x How are you doing?
This is a trip-- you don’t want it to be true. And everyone is telling you to get up get a job, do this and do that and you used to and CSNT pr can’t consistently so it’s very confusing and invalidating and I just want answers and knowledge and ability to do what I need and not have to explain self . To know how to get through this
I believe mine was caused by a toxic mold in my home I lived in for 10 yrs before I knew it was there. I had 3 surgeries and just kept getting sicker and sicker and couldn't wake up with literally 7 alarm clocks around my couch. Then a chiro fractured my spine and working on it destroyed me. I wasn't getting proper health care. I still have serious issues with rust, dust, and mold. Certain kinds though. I had the perfect storm in Nov 21.. tonsillitis, flu, bronchitis, pneumonia then covid. All in one month. I had both vaccs. I got again in Aug 22 and I've gone completely down since end of Nov beginning Dec 21!!!! They wouldn't give me a booster, flu shot or pneumonia shot because I am always sick with something stupid. So I got covid again in April this year! Wow now everything is just so random and I don't know if I'm coming or going. I refuse to drive when I feel so dizzy and nauseated and disconnected from my brain now body too. My boyfriend just had a total hip replacement 20 days ago and he's angy I can't go over and help him all the time or even just a few hours every evening. I can't I just can't I try but my body stops me
Imagine you have been in a horrible car accident and every muscle in your body is horribly sore, also you lost a third of your blood, plus you hit your head and you've got a concussion. Add to that you had a bottle of vodka before the accident and the hangover that comes with that, and now you have a bladder infection. Then you are just start to feel better and a WWE wrestler pushes you down a flight of stairs, twice. Then people tell you that you look fine. Yup, that about sums it up, I think, what did I forget? I can't remember, what was I talking about? Whoops, I have to lay down before I faint, bye.
35 years of that and at 88 am told how wonderful and beautiful I look. I smile and listen to other bitch but I YAWN AND GO TO BED AND LIE THERE NOT MOVING pain pills only made me dizzy and nauseated. I am surprised I am still alive and smiling.
It is near impossible to really comprehend what it means to have debilitating fatigue, unless you have experienced it. Having had Covid taught me a lot about CFS. It lasted way longer than two weeks; several months for me. It’s been only recently that I’ve felt my activity levels return to something like “normal”. Thankfully. But now I understand what having long Covid or Chronic Fatigue Syndrome might be like, but for way longer. You want to do things, but there is no way…….no way…..you can get up and do them. Ugh !
I have it. I have been in bed for 2 1/2 years now. I wish I would wake up from this nightmare. When I wake up, I am still so tired that I go back to sleep for many hours. I get confused. Pain on a daily basis is present. Always dizzy. I feel as if I wake up drunk.
@@xAWTxREDMIST same. No diagnosis and 10 years of suffering. Did you try to figure out auto-brewery syndrome? If you have that hangover-like feeling, you should definitely check it out. Not my case tho. I even did the special diet, felt a bit better, at least I did not sweat like a pig all the time, but nothing life-changing unfortunately. Well, I heard that paleo-diet, meat-eater approach and stuff also could help with CFS symptoms, so idk, maybe it was the case
I have debilitating chronic fatigue from different medical issues. I can’t do many things I would like to. I can’t imagine what people with M.E. go through. My heart goes out to everyone dealing with it, and I hope you can someday find relief.
I needed this post today, I e had a bad flare of M.E. Over the last 5 days, it helped to refresh my memory of how my fibromyalgia and chronic fatigue affects my life. I try to ignore it and push on, but I really overdid it the last month and I’m really paying for it now. I can’t even go for long drives because I get ocular migraines and not only does your head hurt your blind ; I have almost every symptom you mentioned, I’ve had them for over 45 years, younger I could push through most “acting” as normal as I could in public. One of my biggest symptoms is Odors, they can set me off big time!! Thank you for reminding me I’m not alone.
I’m watching this after passing out for 3 hours after 2 chores. I’m not formally diagnosed because I can’t do the work up required to rule out other illnesses, but having almost all of these symptoms is really validating. Thank you for bringing awareness to this.
Of everything I think the hair loss and digestive issues are probably the most upsetting. I'm not sensitive to sound per se, however I no longer get pleasure from listening to music. Hard to explain. I just avoid it as much as possible. And mirrors, lest I catch sight of the "m.e face"! Not all bad though. I took advice from a fellow sufferer: "stop, drop, relax." Try not to do strenuous things all at once. Rest when you want to. Hard when we've been programmed all our lives to "ignore and push through." Understanding my body is trying to help me, I'm actually enjoying life more than ever. Sleep and brain fog has improved so I can make jewellery and hopefully make some money. I don't miss the gym. To those who may judge: I'm not lazy and I don't owe you an explanation. Life is good when you don't care about what other people think.
This is a long shot since it's an old post but I might have something that will allow you to enjoy music again (I have all symptoms listed plus some, I also was not able to enjoy music). The fix for me was... THC. In CA cannabis is now legal and when I take a low dose (generally a 5mg gummy) I am able to enjoy music again. Not saying it would work for everyone but it sure is a nice change when it does.
Along the lines of the sleep dysregulation when I first got sick I could not stay asleep for more than two hours, despite being exhausted out of my mind. It also triggered a circadian rhythm reversal that I have fought for 15 years. This past year I fell into a hideous phase of staying awake for 30 to 48 hours at a time and then sleeping for 16 to 20 hours straight!
On top of all these is that I cannot get comfortable, at all. I truly feel my life is just not worth living anymore,I fight that every day. Thankfully I have a good sense of humour.😊
I’m so glad I found you! Subscribed right away! I’m in tears, never have I felt more understood. I have most of these symptoms and am just now getting a doctor to see that I have ME/CFS. I have lost so much because of this. Currently I need a lot of dental work but because of the awful vertigo I cancel appointments a lot. Have to sell my bike too, I used to love riding my bike😢
Thankyou for taking the time and effort for making this video. Such an isolating condition with little or no understanding by others, professionals don't believe or take us seriously. You simply cannot understand unless you have experienced this debilitating condition. We are not weak, lazy but in fact the complete opposite in another lifetime before this took over. Bless the ME community. 🙏
Almost 42 years of ME for me and I thank you for your videos. The only comment I might make is that yes, heat intolerance is bad in ME, however, mine is only with weather heat and the heat of showers, hot baths and a sauna are things I cannot do without. Not only do they not make symptoms worse they are the only thing that helps me through the body pains and the sauna is the only way for an ME patient to sweat and get rid of toxins. It always helps. My worst symptom is crushing pressure on my ribs by noon every day. It feels like a vise is ever tightening around my ribcage and it tightens so much I can hardly speak or swallow then it begins to lessen by evening.
@@KidCity1985 I'd sure be careful using that its side effects are pretty bad. Anyone taking it for anxiety may I recommend taking GABA instead and you can take quite a few of them until they are effective and it does build in your system so after reaching a good level you can usually maintain it with two at bedtime.
@@KidCity1985 True Gaba isn't for nerve pain, for that I use cannabis. Thankfully I live in a state where it is legal so grow my own and make infuse it in honey. Just a 1/4 tsp helps with a lot of pain, nausea and even migraine.
Thanks, I have given up saying I am tired, I tell them that I am to tired to breath, it requires concentration because the autonomic system doesn't work well. I have had me/CFS for about 65 years although it was only diagnosed about 6 years ago.
Another strange thing that happened was a sudden aversion to meat. I did not Eat meat for the first 10 years and then slowly over the past five years I began dabbling in occasionally eating chicken. I also developed a sudden aversion to alcohol, not that I drank very often to begin with, but it was bizarre how the very thought of it made me nauseous! When commercials came on it would literally cause nausea to just think of the smell of it. I have not had a drop of alcohol since I got sick 15 years ago. Another thing was a heartbreaking sensitivity to music. I could not listen to anything because it reminded me so much of life and made me cry. In the past few years I have began occasionally listening to music again, but it’s still evokes a lot of emotion!
13/21, plus sensitivity to smells. Depression as well; not so much a symptom but a consequence of the changes I had to make in my life because of the disease. I don't know anyone else with the same condition in my country, my doctor has more patients with ME/CFS but support groups are not really a thing here. I am grateful for videos like this, and for the chance to connect to the people online going through a similar experience. Hang in there! 🤗😽
Another thing that happened very early on was breaking out in profuse sweats. I mean, literally changing my pajamas, every hour at times which resulted in wet pajamas - (since that’s what I live in) hanging everywhere to dry them out- so that the house looked like a Chinese laundry!
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/tr.png)
For more info on what M.E. is: www.cdc.gov/me-cfs/about/index.html
Thank You!!! That sounds rough. I share some symptoms but due to CPTSD. Take as best care of yourself as you can. I hope that you have support.
Listen Here !!!! You are describing symptoms of Lyme Disease
Panic attacks nightmare exhaustion ……‼️ 9:45
ALL PETROPHARMA CAUSES ALLERGIC PROBLEMS after a while ‼️ 12:16
IN BELGIUM 🇧🇪 THEY DON’t NOW WHAT TO DO WHIT ME , Sir ❤️‼️ 13:29
I used to joke that having this disease was a good news/bad news situation. The good news is that it won't kill you. The bad news is that it won't kill you. Gallows humor. Those of us with ME will get it, I think.
I keep thinking it will kill me.though. How is my body holding out? Its a mazing really :).
Yes, this! 😢😂
I get it,but I had to realize that if I go push myself and keep doing that I will die
Absolutely! And my partner - who was my caregiver, died suddenly on me too! He was only 30 years old. I miss him so much. He was the humour, the sunshine in my day. And now that he's gone, CFS and isolation is all that I have 😞
Strength and compassion to everybody that's going through this! Seriously... 💪❤️
The bad news is: ME does kill.
The best words I've seen to describe the feeling "it feels like your actual life force is draining out of you, this must be what dying feels like".
You took the words right out of my mouth, mate. In fact, most days it feels like worse than dying, 'coz it's like having to suffer through the slowest form of death, but yet never dead, nor living either; more like a zombie than a person.
❤💔❤️
The best way I have found to describe it, is that it's like being allergic to life and everything in it (-_-)
I know that feeling well. The dramatic reduction in the sensation of "life force", "your life force is drained out of you" is, in my patient-informed opinion, an accurate one that reflects what is happening at the level of cells throughout a CFS/ME patient's body given what Robert Naviaux, MD and others know about Cell Danger Response. The cell adaptations out of "everything's okay, vigorous living mode" and into "DANGER DANGER, shelter in place, turtle-pulled-in-to-the-shell-to-survive-danger" mode result in the dramatic curtailing of the ATP production rate and thus cells are starved for fuel to do more than the bare minimum to survive, resulting in "drained life force" feeling DRAMATICALLY lower cellular vigor/ work capacity for operations, defense and repair. A body made up of cells that are struggling in these ways results in a life of agonizing, bare *existing*, not healthy, vigorously, joyously *living*.
.
It's a horrific taste of what it's like to live in a body in extreme old age.
.
There's one silver lining: I'll never take the health of my body's cells for granted ever again. This horrific experience has taught me how vulnerable they are.
That’s exactly how I started thinking is that I was slowly dying! I’m going to try a CFS diet and see if it helps because I can’t go on this way.
Boredom and cabin fever needs to be mentioned….unable to leave your bed, room and house is mentally devastating…..most of us were the type of people to never sit still so it’s an even harder situation to be in….the mind is racing with ideas and things you want to do/complete but the body won’t let you….even on my worse day I feel guilty for lying in bed….I noticed I determined my worth by what I could get done/achieve so doing nothing is torture smh….
I had to learn to be satisfied with who I am, to focus on being, not doing.
I could become bitter and focus on my horrible situation, or force myself to find little things to be grateful for...at least I have a bed, I have running water, I have a blanket, etc.
@@cherylallis2458you singlehandedly made my entire day with your comment. Going into month 3 on the bed and today is really bad. I am literally so weak and falling asleep all day.
Thank you for reminding me of gratitude.
I don't have any friends or family I can call...I will reach out to my son later, but I am so grateful for my bed as well and my sweet cat sleeping next to me.
I have so much to do but will try to be kind to myself.
Thank you! Feel better soon!🪻🪻🪻🪻🪻
@@SweepDailyWin ❤ kenne ich, wenn niemand da ist … 😢
Yes! I feel like you just described ME! I think the guilt is the worst! I have a wonderful husband and family and they try to understand and give me so much grace but I feel so guilty ALL the time!
Cabin fever especially when the weather is nice. After three days of staying inside I have another bunch of errands and then wham down and out again. Same shit every week and doing one errand or two each day still endsupin a crash *sigh*
I have spent so much of my adult life trying to explain this to family and friends who assume I am a lazy person. Now I focus on myself because I was worsening my mental health
Thank you
I REALLY needed your comment
@@kateskeys Take care of yourself. It’s their problem not yours.
Take care of yourself first, especially if no one else gives you compassion.
I agree with you but, I find the loneliness of losing that closeness I used to have cripples me. I try and look after myself but, at the same time, I actually 'need' them. If only I could ever really get them to understand it.
@@santipolo1963 I need them as well however they will be without me if I don’t care for myself. Love them dearly. But I can’t force someone to understand something they are not interested in. They see the difference in my actions of how I’m taking care of me.
The majority of people I come across, are sadly clueless about the condition. I’ve tried to express myself by saying that ME/fatigue is NOT tiredness, please don’t tell me that I’m tired. This is like saying that someone with depression is a bit fed up. Please, it’s not tiredness it’s unbearable exhaustion. Thank you for posting, this is invaluable 🙏
Yes! I never knew before this that such an intense fatigue existed! I told my dr I didn’t know exhaustion could literally be painful like this!
I stopped calling it "fatigue" a year or 2 ago. That's exactly what this is: "Exhaustion." Everyone has been fatigued at some point - but not everyone has "Chronic Exhaustion" & pain, 24/7.
When someone says it’s tiredness and they are tired too I say: ” oh so you can’t walk to the bathroom either. I can’t shower either” . Shuts them right up after a look of astonishment crosses their face😂
Amen. I am so over people telling me I am lazy and just need to get off the couch. If you’ve never experienced the depth of the daily exhausting while trying to functions in a hyperactive world, people just assume it’s just we need a nap, need to pace better, get to bed earlier etc. But I am over being made fun of and being given suggestions of how to perk up my life.
This sounds like vitamin deficiency, what's the difference?
Hey, Johnny! Sensitivity to smells! Cognitive issues, such as not being able to retrieve words, inability to remember simple things like a toaster, losing your thoughts, not remembering where you left off in the conversation, and complete brain blank!🌻💛
Chemical sensitivities are a huge problem for me . Exposure can set off all the symptoms mentioned plus.
@@peaceswirl Yes! I get serious headaches for weeks after a trigger, too. Hydrocortisone orally helps calm the headaches some.
@@peaceswirl Of all my symptoms, even fatigue, MCS, multiple chemical sensitivity, is the worst!! It affects what I eat, smell, ingest, and apply! Medications that I may need, I cannot take. I can’t even go over other people’s houses because most have artificial air fresheners. Now that wearing a mask has become normalized, it has been a blessing.🔅
I started a UA-cam channel and this actually happens on my videos. Often it sounds like I have no command over the English Language.
@@peaceswirl - Yes and the facilitation of widespread sanitization over the past few years has been hellish triggering allergic reactions - there seems to be no escape.
We should change the name to Chronic Exhaustion Syndrome. Fatigue doesn’t give it any justice at all.
I couldn’t agree more.. Exhaustion is how it feels. Thank you ❤
ME already has a name: ME, which is accurate. It is not a syndrome, but a specific enteroviral vascular neurological disorder.
CED? Chronic Exhaustion Disease?
It’s important to know some of the Causes of the fatigue, such as viral overload ( EBV, CMV ,etc) and that fatigue results from physical, mental, and emotional exertion. Talking and social interaction is commonly a source of energy depletion.
People with ME suffer with hyper sensitivity of the central nervous system. All stimuli are an assault on our systems and causes a variety of reactions.
There are also often issues with the heart, irregular or rapid heart rates. This can result in dizziness, shortness of breath, lack of coordination, blood pressure issues , including low blood pressure and low blood volume.
The severity of the fatigue in ME can’t be stressed enough. It is not tiredness. It is a total energy depletion so extreme that it can be hard to draw a breath, move one’s eyes, process a thought.
And it can occur very suddenly, as if some plug has been pulled and everything just drains out of you. You just come to a halt, reeling from horrific exhaustion. At one point I felt that each heartbeat was going to use the last ounce of life energy in my body. I didn’t have any reserves. It was so frightening.
People who have never experienced this type of total body depletion can’t imagine it’s impact on the psyche and emotions.
Well said.
Sehr gut beschrieben, so ist es auch bei mir.
Und dann noch die vielen Entzündungen, Allergien, Krämpfe, Übelkeit, … 😢
Spot on. It is scary, but have discovered that it is a mitochondria dysfunction along with fibromyalgia. I have monthly B12 injections, activated multi B, amino acids and some herbs etc. Good to go to a doctor who is into functional medicine if you can. It seems to be a mitochondria gene defect that causes it. Would be a good place to start if you are able to have the gene tested. It's not cheap, but perhaps insurance companies with the right cover, might cover it.
@@patriciamaclennan5634 hi, Patricia ~ thanks for sharing.
I 'Googled' mitochondria + ME/CFS a few days ago, and found a paper that indicated at least some of the medical establishment IS finally beginning to make some connections btwn adult-onset mitochondrial dysfunction and ME/CFS... Tho they haven't, yet, NAMED it as a Syndrome/set of inherited dysfunctions. (Ie: LHON, **) IF you'd like me to send the link, reply and I'll get back with it.
I agree, that if you're able to get the mitochondrial (mDNA) test covered by your insurance, do it.
It certainly will cast light on at least PART of the health issues you're dealing with... specifically those related to how/where *your* broken energy production is broken.
I was fortunate to have decent insurance that covered my test in 2009, bcuz my mother had been in ICU for 6 weeks, and eventually was diagnosed with TOXIC METABOLIC ENCEPHALOPATHY.
(I thank God, we DIDN'T heed the Doctors that encouraged us to pull the plug on her! Instead, I asked for the name of a Neurologist they'd want their own Mother's to be seen by, then INSISTED on getting HIS opinion, even though he wasn't "on staff" there.)
While Toxic Metabolic Encephalopathy, didn't bring a great prognosis, it gave the Doctors something specific to fight!
And, THAT diagnosis pointed my sisters and I towards her/our acquired genetics. (mDNA)
[**At the time, I was told they may have a 'name' for our group of disorders within the next 5 years or so. It's been 14!]
BTW:
a few of the genome/ancestry sites have added mDNA testing to their offerings.
I'm not sure of the cost, or how specific these tests are... they may offer an alternative for those whose insurance won't cover.
Thanks again for sharing. ..
If you haven't already visited MITO.ORG, you might take a look.
They have tons of information about energy production disorders.
Take care. NB
****
So true.
It changes EVERYTHING.
Absolutely everything.
It's a constant negotiation.
No more taking for granted that you can walk around the block, or across a parking lot, let alone clean the whole house (or yourself!) some days.
If you aren't familiar with the concept of 'spoons' as an analogy for energy expenditures ~ I came across "spoonies" while searching for coping skills and life management for those who are living with debilitating and chronic illness.
I found some helpful information . Especially as a tool when trying to explain to others HOW DIFFERENT things are for me now.
Hang in there.
NB
I've dealt with ME/CFS for 27 years. I have all of the 20 symptoms you mentioned, plus the other 3 you added at the end. I also suffer from head and neck pressure, face and jaw pain, extreme thirst causing having to urinate often, tinnitus, eye watering, exercise intolerance, heart palpitations and a heavy heartbeat, depression and anxiety, severe periods, dark circles under my eyes (instead of bags), and my newest symptom... body buzzing. No idea WTF that's all about. Soft hugs and love to all dealing with this s**t.
I’m just discovering this disease I have been struggling with symptoms for like 3 years.. I can’t imagine the journey you’ve endured that long 😞 I got checked at the hospital for low iron etc. and basically gave up after that like… well nothing is wrong with me even tho there is. I’m going back to the doctor again
I have body buzzing as well. Feels so weird!
How would you describe the body buzzing? I think you might just have given a name to the sensations i have and which i find utterly difficult to describe...
I thought I only had fibromyalgia... I think maybe I have this. I have all the symtoms you mentioned. Sending love to you ❤.
@@jolinalindell3922 are you hypermobile I had CFS before fybromyalgia or is it still cfs
😮YES! you wake up feeling like you fought the bed all night ...
and the bed WON!!
1. Fatigue
2. Brain fog
3. Muscle pain/tightness
4. Dizziness/vertigo
5. Nausea
6.ibs/ibsd/ sibo
7. Migraines/headaches
8. Insomnia
9.skin issues
10. Hair loss
11. Light/ sound sensitivity
12. Swollen glands
13. Blurred vision
14. Shortness of breath
15. Post exertion malaise
16. Joint pain
17. Unrefreshing sleep
18. Heat/ cold intolerance
19. Paleness/ bags under the eyes
20. Sensitivity to medications/supplements
21. Heart rate issues
Fainting
POTS
Low blood pressure
Sounds like your talking about my life🙄
22. Extreme pressure in the skull.
23. Unexplained anxiety.
24. Extremely hard to think.
25. Symptoms that resemble ADHD
26. Pressure around and behind eyes.
27. Night sweats
28. Mast cell activation syndrome or just sudden sensitivity to food, perfumes, soap etc.
29. Orthostatic Intolerance - is another symptom that doesn't always require POTS or elevated heart rate. I suffer severely from OT, but my heart rate stays within the norm. It's so bad that many of the other symptoms worsen while sitting upright or standing, and the symptoms only reduce when lying down. It's linked to low blood flow in the brain
Fatigue , is more than the standard fatigue healthy people have, I'd call M.E. fatigue "Overwhelming profound disabling extreme fatigue and weekness"
30. (I forgot) I sometimes have days-weeks when I feel like my neck or/and back is/are extremely stiff.
And sometimes it feels like some of my bones are on the verge of breaking, or like a bulldozer have run over and broken my back into tiny pieces (I’ve broken an ankle before, and it’s the same feeling/pain). 😐
I am also diagnosed with Hypermobile EDS like many others with M.E., so the symptoms might be explained by the hyper mobility (like many of the other symptoms).
Yes and Thank you! On top of the symptoms imagine being doubted and taken for a fake by people around you AND doctors...That's the icing on the cake. The thing with healthy people is it's really hard to imagine something that you have never experienced yourself, so because they naturally tend to compare to what they know they for instance have a hard time separating the "feeling tired" and "debilitating fatigued" and think it's pretty much the same, so they kinda expect you to just push through (and if you don't, you're lazy/not motivated/don't want it enough/don't love them enough).. their brains just cannot grasp it! And we're left feeling lonely and deeply misunderstood. Thank God for people like you who try to spread awareness and make us feel less lonely and more seen! 🙏🤗
Spot on.
True, they almost never get it even if they have great intentions
Noo
Very true. Plus, most of us don’t look sick and every chance we get( a “ good day” comes along) we make a monumental effort to do all we can in spite of our overwhelming symptoms. So we are judged by that one day when people see us acting “ normal”. They assume that the rest of the time we are taking being sick. They don’t see the PEM we suffer after exertion.
@@penelopelambson6794 amen to that!
Does anyone else get a sudden onset of fear that they are going to fall over and have anxiety about being able to be home so you can just collapse? I feel like the battery starts to drain and I have this urgency to find a soft spot to land.
all the time
Daily...you are not alone. What a horrible feeling
I was like this in my worst. I wouldnt want to leave home because I was scared I would have a panic attack in public.
yes all the time
I feel like I’m melting into the floor when this happens. =(
For years I have felt so tired I would want to throw up, vertigo, nausea, yep bathroom problems, yep migraines and headaches, yep insomnia, muscle pain, rashes, yes light and sound sensitivity, had to wear bi-focals since age20, have blurred vision, yes joint pain, yep unrefreshed sleep, yes heat intolerance, yes medication sensitivity and chemical sensitivity, yes brain fog, light headed I am now 66 and been dealing with this since I was a teenager and people just don't understand what I am talking about, seeing this video a year after it was posted, I am thankful I found it, God Bless to everyone who sees my post
Kathy,Be well
🌹🤗
Your symptoms sound a lot like my grandma. She was diagnosed with fibromyalgia but the big things she struggled with was sensitivity to smell and to medication side effects. She was also sensitive to cold and hot. My family wasn't always understanding but I was pretty much attuned to her symptoms. I could tell when she was pretending to be ok. They always said all she did was complain but what else is there to do when you are that miserable all the time and no one believes you 😢
@@Childoftheking89 💙
I can't express enough how I feel for your plight. It's beyond my ability to understand how most of your adult life has been lost, and the torture you've endured. I'm so sorry for your loss. I hope at least you've had someone in your life to help.
God bless you! I have 17 out of 20 symptoms that this man describes! I’ve been researching my ailment for the last several years after I had covid 2 times and again after the second vax booster. It laid me up in bed for almost a week. Now I’m left with the symptoms you discuss hare! That you so very much for validating me and my backing me up!!!!!
all of the above, passing out, messed up blood sugars, tinnitus, memory issues :(
What wasn’t mentioned is feeling so sick a healthy person would go to the ER feeling like they were dying. Many people with ME/CFS myself included say it feels like your body is being poisoned.
I sincerely thought I had cancer , I was so convinced of it . I thought it would be terrible to just die and not have told my family, so I did.
My dad went into a coma shortly after that. Its only when I didnt die and nothing changed that I began to accept that I might be wrong.
I didnt get tests because I havent seen doctors for years because I gave up on them. I wouldnt want their treatment of chemo anyway . So thats why doctors werent /arent part of the picture.
Funny you mention going to the ER because I did just that! When this illness first began I was a very healthy/fit young person. After a mild cold/flu type illness I was struck with an unrelenting level of fatigue and muscle weakness that I had never experienced. It just would not alleviate and I was struggling to attend a couple college classes or even just hang out with friends. I remember thinking for sure the ER docs were going to tell me I had leukemia or some deficiency, but they couldn’t find anything wrong and told me to follow up with my primary dr. Well here we are 15 years later. Still no answers, still suffering and the worst of it all is the continual dismissal from drs and family.
@@smakkdat That is the worst when even your doctor doesn't want to believe what you are feeling and put you through a myriad of tests that come back normal, so frustrating!!
yes it does feel like i’m poisoned
It helped me to stop getting highlights in my hair & no more pedicures. Just going into a salon felt like I was being poisoned. Went through all my toiletries, make up, cleaning products, etc & replaced with natural (no synthetic scents, etc). I don’t feel like I’m being poisoned anymore but I am highly sensitive to all this stuff if I go to someone’s house or a store, I can’t stand all the smells; Highly Sensitive Person now, LOL.
Constant thirst,runny nose, intolerance to any stressors and severe reaction to bad smells.
I recently saw a GP who said all my symptoms were overwhelming for her . I replied now just imagine how ot is living with it all the time.
great answer
That is an infuriating reaction from a doctor
I had that reaction from a dr, she ran an ana titer and then after it was positive dismissed it as x% of positive have no symptoms at all....like then why did you order it and I must have had symptoms fir it to be ordered in the first place since you need icd 9 codes when ordering tests you can't test for no reason. She ended up leaving the clinic, 5 years ago still no new primary anyone I have tried is worse and I get such anxiety and fear that pushes me away from going in but I can't work and without documentation ssi will deny me. The pain clinic I go to cut my pain meds because that is their goal no matter who the patient is or what is wrong. My trauma therapist left the clinic, no ptsd therapy since just a young girl still working on licensing who smiled while asking me to walk her through my panic attacks. Now no one. My body pain I see no one as I go to pain clinic for a work injury 10 years old. I had been improving then got worse last few years...only thing I do not have is swollen glands, at least never said by a dr. But because symptoms have come at different times and not all at once they are treated as all separate and not all from same issue. Like migraines have been here 20 years, body pain after back injury but 2017 I was told fibromyalgia because my back hurt when he touched tender points. And he basically said don't bother trying to get social security he does not help. We are going to be homeless and I can't work, I wish I could. Grocery shopping for the bulk of the month, food stamps, I was in bed for 3 days I could not move my ankles. I went to the bathroom and I made my don a sandwich for dinner, he makes a hot pocket when he wakes up. Ut because of that I had food thrown out because I never did the work to make chicken and stuff for our salads and I forgot I had a slice of cake for my son in fridge out of sight out of mind. I lose track of time now. I can type a reply to a post on UA-cam or fb and an hour went by...like what. I can't get my home clean. With my ex arrested and no contact order, he was my caregiver they never replaced him or helped with my son. My ex threatened if I kicked him out i would never get help from anyone and I swear he had to have. My case manager can't even order a bus card. She left a voicemail she needed me permission for her to order it...I did that in January she never ordered a replacement for my broken cane like she said she would. My son has his assessment needed, next 2 weeks, fir renewal. I am going to ask her how I get myself switched to a new company and how to find out what communications he had. I suspect plenty, my last assessment said something about angry outbursts, not true but my ex was trying to gaslight me and projected his anger, yet when he raged at me I never touched him never yelled never threw anything. I stayed calm. And called 911 while so afraid. But now I have no help and we are suffering. Over 3 months lunchmeat sandwiches for dinner every night. Nothing cooked. I get dizzy heart rate increases I sweat, from several minutes standing still. My ex used the new stool I bought for me to be in kitchen, put it together, thank you, then used it at his work table, hey wait a minute, then cracked the seat in half threw it out, never replaced. Card table for my son and I to eat at, thrown out as he wanted to eat alone st his work table away from my son, he would try to fight with my son physically. Did once in beginning used the he was trauma triggered excuse, but obviously not looking back as he would bait my don to swing at him so he could hit back. I blocked them every time but it took a toll. I am better today than the day after his arrest. But not doing well. Insomnia again and this morning I can't go back to bed. I somehow need to stay awake get the meals on wheels delivery bring it to my neighbors, my freezer has zero room, and then give my son a very needed bath, I need one but we don't get both on same day. That was the day of the fight. He expected me to shower cut my sons hair give him a bath all 3 on same day. Without help he got paid to help me. He never cleaned anything beyond his work area. I need to clean fir his cadi waiver appt. I feel drained of life, energy chi, can't describe. And my pain with less pain medication, because he says my brain will take over.
Sounds like an uneducated doctor!!
People don't understand how heavy this fatigue is..to it feels like concrete has been poured over my head, then I have been run over by the concrete truck. Then when I am lying on the floor, trying to get up, I feel like someone has come along and sedated me... i spend the day bed bound, like a zombie, just looking up at the ceiling, unable to sleep. Use to spend a lot of time thinking about suicide. Pray for a medical break through. Gurmail
Yes exactly!!! It’s not just “being tired” it’s like when you’ve had a high fever with the flu and the whole body weakness you get where you can barely get up. U r not alone ❤
Good description - very relatable.
That should be written on a t-shirt - ha! Perfect analogy
Best analogy
When i share such thoughts they label me depressed ..they can't understand how does it feel like to stay on bad for years where your frnds outside enjoying life all u do is just watch them and wish one day i could be ok .....sometimes i wish if they get this problem for one day they will understand and make world a better place for us
I’ve had most of these symptoms for years. I’m 65 and am tired of trying to get a doctor to believe/acknowledge the seriousness of my symptoms and the impact they’ve had on my life. I’m sick of fighting it.
I, too feel as you do! It’s terrible. I feel like I’m done with this world
Yup, me too. I'm 75 and been struggling for probably 40 years. I weep for your pain, because I know it's real.
Sending prayers for all of us ladies. We got this far and life is worth living.
Going on 30 years for me
I so relate. Minimum amount of meds as possible and docs just cannot do much about this...hard fact. I'm just on repeat...and feel crazy. I am tired of it. Tired of explaining and getting no feedback.
I have 16 symptoms and just learned about this today- from this video
I had to google M.E.
I have had long covid for 2 years and I have all of these symptoms daily including the extras at the end! I also get muscle jerks and twitches, hoarse Voice and swallowing issues, apnoea, severe tinnitus, foot pain, spine pain, pins and needles and numbness, like electricity in hands and feet, altered mood for obvious reasons. I could go on..I can’t believe people have suffered with this for decades and there’s no help, it’s beyond horrific!
Ya its been a rough road for many with ME/CFS as you seem to understand (sorry to hear you are unwell). Its starting to look like long covid is in fact M.E. Pretty crazy.
Sorry to hear you are going through this. Its a very challenging illness.
So sorry, but so interesting to compare notes. I started with (presumed) long covid in March 2020. Fatigue has been primary, but as with you, electric/tingling skin, what I call microspasms, tinnitus, pins/needles, and VOCAL! I've been largely without my voice for 2.5 years now - very hard to function in the world without speech. Been to 2 ENTs and they just say "atrophy, do vocal therapy". But that triggers everything else - a vicious cycle! And my list is longer, too, but this is enough. Keep fighting it, one day at a time - you're not alone!
I’m so sorry to hear this. I also have the symptoms you just mentioned. Many of the neurological symptoms started the night of my 2nd C-VAX. It sure is a battle.
@danielscheerer3032 HI there. I was also having trouble with speech and shortness of breath. I went to local ER and ENT doctor diagnosed me with VOCAL CORD DYSFUNCTION and gave me prescription for Albuterol inhaler with Nebulizer. I can use that every 4 hours when I am short of breath and have voice changes or hoarseness.
He is describing every day of the past 5 years for me. I gave up on the expectation that a doctor would do something helpful 2 years ago.
Hey !!!! Find a Doctor that knows about Lyme Disease
30 yrs for me...
Thank you for this video
@@drdeath2777 one dr said I have Lymes...is that linked to ME?
@@olivierjohan2321I personally think that Long Covid, Long Lime and ME/CFS are the same thing.
I've been ill since 2019. Alternative doctor said it's coming from my kidneys - adrenal fatigue. it's been horrific. I think adrenal fatigue, ME, CFS and fibromyalgia are basically the same thing. Decades of physical trauma and psychological trauma caused this debilitating illness for me. Many times I've felt like I was dying and wished it. it's been a rollercoaster of horribleness where people think you're imagining it all. So depressing. I'm 77 now and praying I'll have some good years before I pass on. I used to be a gardener but haven't been able to even dig a hole to plant a bulb for over 6 years. I was getting acupuncture early on which helped but covid mandates finished all that. it's a rollercoaster and I wonder if I'll ever get right again. My advice - get STRESS out of your life.
32 yrs from the onset of M.E ,my life has literally been stolen..my only hope now is dead.
I feel the same
Don't give up the answers are out there.
Tinnitus, stomach pain, nerve and muscle spasms, Sore throat.
The muscle spasms are enraging! I have to rub ibuprofen gel into my legs to get any relief. The stomach pain has been so bad that I convinced myself that death was imminent and thought that it would be a relief.
+ clumsiness, slurred speech, losing your balance, intermittent limping, difficulty swallowing
Have you been checked for MS?
If it were me, I would talk to a doctor about ruling out MS.
@@fight4me747 it's been 10 years since I have the symptoms. I checked everything: MS, ALS ... all possible neurodegenerative disease
I have these too!
Clumsiness and slurred speech and feeling as if there’s something in my throat, that I need to clear it but no difficulty swallowing
The worst is feeling judged by family/coworkers for limiting your activities because "you look like you're doing fine" or "I don't see any of those symptoms."
My personal favorite is "All of your tests come back normal."
The "all of your test come back normal" immidiately made me want to flip a table.
Im going through this right now. But looking into ME/CFS and hearing others experiences make me feel a lot less alone. And hopefully that more attention will be brought to the diagnosis and more research/funding/relief for those who suffer.
I literally just wanted to cry!! You mentioned everything I have been suffering and trying to deal with on a daily basis… I kept thinking it’s a serious illness I’m having as I no longer feel normal :(
It is a serious illness, have you been drinking the kool aid?
Its worse than cancer because cancer only lasts for a few months or a couple of years and then death frees the victim from their suffering.
Always remember how important it is to speak to a doctor and get other possible causes ruled out. Many of these symptoms could also indicate other conditions which might be treatable.
Unrefreshing sleep = you awake feeling awful.
I felt this!!😢
Because you aren't get the REM part of sleep, that allows for you to feel refreshed and well rested.
I often wake up with a migraine.
Ì thought I had it but I realized I had adult Adhd and it was making me very tired focusing and doing a lot of mundane tasks and looking for dopamine all the time. If you have Mental fatigue please check for something like adhd..
I now take small does of medication daily and feel fine.
But how do you know if thats not sleep apnea?
3 years of ME/CFS here from a covid infection. The tachycardia and very weird heart rate issues have been my primary problem. All my tests show that I have a perfectly healthy heart but man this illness makes you feel like you are dying some days.
I have certainly felt like I was dying, especially when my CFS was compounded with another illness!😩
@@lifewithspirit323 some symptoms have changed over decades but pain worst for me
I believe mine was from covid too 😢
@@Truerealism747 I’m so sorry, Tom.
@@lifewithspirit323 thankyou I have heds do you? Also Asperger's add not sure what's causing what getting my heart valves checked next week
Thank you for this! I have been sick for over 30 years; most of the doctors I’ve been to have not tied all the various symptoms together and you can add “chronic frustration” to the list!
Depression and anxiety are symptoms of ME/CFS that are crippling in and of themselves.
Doctors are really quick to say you’re depressed but it takes years to work out the fatigue
When doctors ask if I’m anxious or depressed, I say, “Yes, and you would be too if the life you loved was ripped away from you.”
No depression/anxiety are not symptoms of ME/CFS. Those two are psychiatric. Fatigue, pain, can wear you down and get you into depression, but so can battling any long term health condition.
Anxiety is psychiatric. If you are having then one of two possibilities, you have CFS AND a psychiatric issue or your problem is psychiatric.
@@FallenJaneProductions tell me about it when they cant find a reason for symptoms they say its all in my head. Anxiety. Who doesnt have it? Does it mean we should take antidepressants despite the risks and whars crazy is they dont know what tests to do to find out whats wrong.
@@SarahNelsonWA anxiety and depression are the new trendy answers drs have when they cant figure out whats wrong. Its like u have to ask and tell them what to do. Nowadays patients research and find answers thats drs have no idea about. Then they blame us for googling and reading.
It's NOT that I want to die, however having Severe ME/CFS for over 20 years, sometimes death does seem like the only way out, or a better option. As I have grown older it's gotten worse. Severe neuropathy, burning, electrical shocks. I am too exhausted to name the serious symptoms I face everyday. Before this diagnosis I was a dancer, in the ocean all the time etc.That person is gone. Thank God I have an amazing Service Dog 🐕
Bless everyone dealing with this dreaded Illness. Thanks for you and your Channel
Hey Kavita, Im sorry to hear that you are struggling. Severe M.E. is brutal.
I am so sorry for what you are going through..😭😭
I had the severe neuropathy as well. Antivirals and B12 shots helped, but a game changer was Hako-Med treatments. I did 20. I am hardly ever in pain at all. Just annoying level when the weather changes.
My neuropathy had traveled from feet and hands throughout my body I to my face and even my tongue. MD refused to prescribe ANY pain med. So blessed that a friend of mine told me about Hako-Med. It was covered by insurance at a different doctor's office near me.
@@cherylallis2458 hey Cheryl, thanks for your reply. Severe Neuropathy SUCKS. I GOT IT IN MY MOUTH. HAD TO HAVE AfTER 3 years, All my teeth removed at the root. Sorry you have Neuropathy. It can be crippling for sure.
WHAT IS HAKO MED? Thanks
@@mtktkt3773 thanks for your kind words
THANK YOU! THANK YOU!! THANK YOU!!!
First of all for your lovely, calm, gentle voice and economy of words!!! So many people who say they are experts on ME/CFS produce videos on the subject where they are loud, fast speaking and they talk for too long with information overload!!! You, however, show your real understanding of the disease and have true empathy and compassion with your audience. This is a great video to give to our families, friends & acquaintances. If I had a dollar for every time someone responded to me when I tell them that I have Chronic Fatigue syndrome, by saying that they felt tired too, I'd be extremely rich by now!!! I wish someone in the field could come up with a better simple name for this life-altering illness. Myalgic Enchephalomylitis is too complicated and it still doesn't cover all that the disease involves. Sending my love to you and all fellow-sufferers! 🙏🏼❤️🙏🏼🕊
It is now called SEID--Systemic Exertional Intolerance Disease. When I tell people I have this they are like, Wow! I've never heard of that. I tell them it's real bad, and they don't argue with me like when I say chronic fatigue.
Some 'specialist' produced a video about CFS & FM . . it lasted over 1&1/2 hours!!! Impossible to watch. You have to laugh or you'd cry.
I so agree with all you said ....❤❤❤
What’s truly fun is having ME/CFS with fibromyalgia and arthritis it’s complete misery every second of every minute of every hour of everyday!
It could be worse.
I also am going blind ,( Im an artist and designer ), and I live with a complete tosser and cant do anything about that. He is a covert narcissist . Boundaries are very triggering for him so its a toss up between looking after myself and not being abused. Because of him, My body constantly makes lots of cortisol.and adrenaline and my heart races. It began with occassional episodes but since a hear its been constant. My body is exactly as one would be if you were hiding in a cupbpoard from someone looking for you to kill you.
I've been diagnosed with fibro, what is is different with cfs/me? Or are they the same illness
@@satsumamoonI feel for you. My situation is similar, except for the blindness. Something’s got to change for us. Don’t lose hope❤
With you 100% on that buddy! I'm 69yrs old, so - of course - I also have prostitis AND a bloody hernia to go along with the ME sh*t (ME since 1988). My heart goes out to those having to fight/cope with this horror during their teens and 20s! I used to follow a well known YT channel 'Physics Girl'... an amazing teacher who's energy for her work made her uploads something worth watching (if you're into physics). Then she went quiet. She is now completely bed-bound, blindfolded and is fed through a tube... these should be her peak years... heart-breaking...🥺 so, if you have time please pop over and give her some love. Her family post updates regularly... WE are the only folks who have an idea what her life is like ❤.
As a former healthy person, I can say that healthy people CAN NOT imagine living with this illness.
I have even had a person with a chronic illness tell me that they were jealous that I was lying on the couch because they wished they could be on the couch!
I get it that they probably should have been on the couch because of how they were feeling,
but, I was wishing I could be able to accomplish even 10 or 10% of what that person accomplished that day.
Heard very similar remarks. Now I don’t really discuss details about ME/FM with most people…They just cannot wrap their minds around this illness. So, by not talking about this illness, I’ve chosen not to be confronted with ignorant insensitivity and that’s working much better for me. 😊
Them:
2019: "Oh, you're so lucky, you get to go home all the time!"
2020: "I don't want to stay home all the time because of some sickness!"
Us: *eyeroll*
yep, the couch. Had my 20 year old daughter come in one day and say sarcastically 'Another hard day on the couch!' Oooo, that one hurt.
It’s looking back at our active former self that’s heartbreaking
I can relate completely!
I'm busy congratulating myself on not getting migraines or headaches. Or IBS. And nausea only affects me as a result of vertigo. So 17 out of 20 for much of the time. (Plus my own extra ones.) After 12 years and eventually retiring, I've reached a fairly stable status quo and now concentrate on my mood and fending off depression. Good luck to us all!
So you should congratulate yourself! Think of yourself as a L’Oréal ad “Because you’re worth it. “😊
i', mm 72, all my life thought i was going insane, thank you for being here
20+ years of that here. Misdiagnosed, ignored, rejected repeatedly by social security. Total disregard by laying on the guilt, extra unnescessary stress, blame etc etc. The only reason I'm still here is my children.
My father had it 10 years. I think it's trauma related, the system is hyperactive, no rest. He healed in 2005, still here, had lots of therapy though.
The worst part is its invisible. If you have cancer you see it, if you break a bone you have a cast, with this there is no outward signs. You can look perfectly healthy. Unfortunately, I have this combined with lymphedema so I just look fat and lazy. I can go 48 hours without sleeping. I already have hyperextending joints from my lymphedema condition so joint pain is everyday. The last part is the emotional strain on yourself because you feel like you are letting everyone down because you can’t do the things that need to be done. My husband use to travel a lot for work (he was gone 3/4 days every week for most of the year) so I was like a single parent for a long time. After my third child was born I slowly began losing my ability to do things. I can’t clean my house, I can’t grocery shop, I can’t even do stairs to do the laundry. I use to plan great birthday parties for my kids, now I can barely organize a party at a kid’s placed designed to do everything for you. It breaks my heart to see the strain I put on my husband and the disappointment on my kids faces when I say no I can’t do that.
Not every cancer is visible, though. Neuroendocrine Tumors dont let you look ill, but fatigue, diarrhea, heart issues, flushing, immune system issues are a regular theme for someone with NET cancer.
I can relate, it’s SO hard not being able to be the mother we once were. 😢
I cried when I read your comment because this is exactly how I feel.
I understand this completely. I feel like I constantly let everyone down. My husband works all the time too and I have no other family to help me. I have 3 kids as well, which 2 are older but they also have health issues which I have to suck up mine for them and be there for them. I push myself more than anyone could know. My 17 yo just graduated and going to graduation plus having her a get together afterwards did me in more than it should've. I'm still trying to recover from it. No one gets it til they get it....
@@UnderHisWings0322 I hear you. My eldest is graduating high school in a few weeks and I don’t know how I’m going to do it. The hardest part for me is hearing my kids say I know you can’t come because you’re sick but it would be nice if you could. Breaks my heart every time I have to say I can’t make it for something.
25 years now with M.E / CFS
Bed Bound also suffer Fibromyalgia , R.A , Psoriasis , Pots , IBS , also Major Depression , and Anxiety , O.C.D , C.P.T.S.D , and that is just some of the main ones , oh yes Hashimoto's disease ... if you have a positive and caring family unit or friends you are so very lucky , unfortunatly i do not , so i am pretty much on my own . My heart goes out to all of us who suffer this Horrendouse illness , know you are worthy and others like you are out here and channels like this are so very helpful in so many ways when you are alone and we can hear and understand others whispers .... yes i ✔ to all symptoms you mentioned but not the hair loss , my pic was back 10 years ago b4 the worst of it smashed me into the wall and took everything .... if i had only knew back prior when i was first diagnosed to rest , maybe just maybe it could have helped , ...much love and understanding to all xo from Kat in Australia .... p.s .. i cannot always comment due to my conditions but i watch all videos and thank you so much for your channel ...🛌🕶🧸❤
Sorry to hear you are on the more severe end. Thanks for your comment.
Katrin,Although we are about 10,000 miles apart we have alot of similarities,alongside a plethora of other illnesses.Also,i have no family or friends anymore(as soon as anyone realises how badly the M.E symptoms are they disappear,Female and male )so at least it shows the calibre of a person and gives me more energy to devote to myself.There's always an upside.Also,We have our own M.E family in this excellent channel! I think finding something you love,makes you happy and are passionate about helps;no matter how small.Hope you're as well as can be.You are not alone .Much love from the U.K.
Thank you so much for this. I really appreciate your videos
❤bless you
My heart goes out to you.
Thank you for your lovely, supportive message.
We are a unique community, for sure. We feel one another's pain, and we empathize ..
Because we deal with and struggle to manage SO many things the rest of the world takes for granted ~ we have compassion for one another.
Sometimes I doubt compassion is even on the rest of the world's 'radar', and it makes me sad.
I'd take my old abilities back in a heartbeat, but I feel blessed to have found that there ARE still caring people out there. PEOPLE like you! For that, I am grateful.
Hang in there.
🤗
I’m 47 and have been living with this my whole life. My heart breaks knowing so many others are suffering with this.
Same here
Try anulom vilom pranayam, should be very helpful
If only my family understood. I am almost a hermit because I hate having to out alone because of the vertigo/and slowness of movement. I often feel like a drunken sailor tottering from one side of the path to another. Cannot walk a straight line. Wheeling a shopping trolley can feel as if the wheels are stuck and the trolly filled with concrete. Almost impossible to push. 1 good positive day can lead to 3 or 4 down days with the need to sleep during the day just to get by. Not doing anything.
I relate!
@estherdavidson7959 Please also get your B12 checked as what you said is very similar symptoms to low B12 which I had and you could have that along side ME/CFS which will make it worse. ✌🏼
I ve had ME for 30 years, i relate to all these symptoms and more. I have POTs and Fibro. Its been a difficult journey and main barrier was friends and family not understanding. Ive lost friends and my marriage as always being poorly. Its a depressing illness. But we battle on. I ve found my baseline now and just pace myself to living within my parameter. Its not easy, and its terribly boring. But we have to carry on the best way we can. Hold in there, you're not alone. Be thankful for the good days and when in a CRASH, remember those good days will come again. x
You have mentioned a lot, but there are many more. I would add very heavy digestions, hartburn, belly inflamation, bloating. Very dry eyes and mouth, tinnitus ( acute noise inside your ears). We often can't remember because there are hundreds.
But I'm sorry to tell you society don't mind that at all. Even doctors don't very much either.
Thank you for this video, I've been re-watching to convince myself I'm not alone or responsible for this dreadful shitty mess of a brain/body I inhabit. The 'outside' world weighs so heavily on you when you feel if they see you looking okay, somehow you must be. Or somehow you can be. But more often than not you simply can't. Like you can't make the grade. That pressure - that's where the guilt starts. It takes a very rare, special, empathetic kind of person to want to understand and can, and thankfully there are one or two in my life.
Keep up the good work.
I get palpitations and high blood pressure! Also the complete inability to regulate my body temperature. I’m either boiling hot or cold. I wear fluffy socks year round now because my feet are usually alway FREEZING cold.
You explained all of these symptoms so well. I have been looking for something to share with my new manager at work and I think this is very informative and will be helpful. So, thank you!
i have every single one of those symptoms, every single day. i was diagnosed with fm about 20 years ago but over time i know my problem is more cfs. i plan my one trip per week to the store and one visit to church per week and feel so accomplished when i've made those appts.! and yes, it is currently 3:10 am and here i am ☺
Calling it Post-viral syndrome would help to give it more context, allow people to understand its origin and reduce the skepticism and disbelief that the word fatigue seems to engender.
Agreed. Though ME/CFS does not always originate from a virus.
I am not sure that works as, some sufferers may suffer and have not had any virus infection, that is just one of many possible triggers. Certainly I do not like CFS at all as a descriptive and prefer ME for no other reason than it sounds more medical. The best banner headline for it is that it is a neurological condition, a problem with the human messaging centre.
@@santipolo1963 We're trying to solve a PR problem here - and an unpronouncable scientific name only feeds the perception that that the disorder is a fabrication trying to dress itself up.
And I suspect that ME/CFS/PVS is only brought on by viral infections.
Don't forget that not all viral infections trigger manifest immune reactions.
@@santipolo1963Indeed. Post-viral for many but also causes may include exposure to toxic substances (mold being one), highly traumatic events like a car accident, brain injuries, etc. A neuro-immune condition.
I've lived with a lot of this since 1987...Truly life-destroying/like pouring acid on existence.
TOOTH LOSS!
is common amongst us!
I'm enduring (gratefully) a full mouth restoration. 2 years into it & I've only gotten my upper finished. Now for the bottoms.
Soooooo painful.
Y'all be mindful of your dental health. Chronic dry mouth will TAKE your teeth!
If dry mouth is destroying your teeth, don't spend thousands trying to save them. I did that. After you pay for 3 crowns & still lose the tooth ... you could've paid for an implant.
It's a grieving process. With a side of guilt.
You blame yourself for your failing teeth. As if you never brushed.
But, if you're like me ...
I took care of my teeth! And it seemed the harder I tried to brush & floss well, my teeth just started snapping off at the gumline anyway.
Your smile is 1/3 of your face!
So, yeah! Healthy people? ... try having a third of your FACE amputated! ... and all the other miserable symptoms we survive every day. Walk a week in these shoes! Try it on for size. You'll think twice about passing the "hypochondriac" judgment on us.
I broke and lost quite a few teeth in the early phase of onset. Thankfully no longer
Thank you for mentioning dry mouth and its effect on teeth. My dr was concerned I was developing Sjogren’s Syndrome. I’ve had some of mine crack vertically for no apparent reason. So odd.
I wondered how this was related, and if it was. I too have always looked after my teeth. For years ive been trying anything and everything. " this really might work, worth a try! " .
I too have had three crack vertically.
Indeed... The grief, I wasnt expecting that. Its exactly the experience.
I dont have a social life anymore, at all. Because of my embarassment. I wont get fhem fixed because Everything ive done to make anything better has done the opposite. The last visit was fo get a bridge thing. It broke two of my teeth. And....the nexr dentist was audibly disgusted at the state of my teeth. I should have sued the beeach, the technician was a witness, but Id rather just go to sleep.
Wow- I didn’t think about my cranial pressure as a symptom/ I was starting to think dysautonomia or some sort of giant cell arthritis…. Really this makes one sound like a hypochondriac, but it is a whole constellation of symptoms that are robbing us of our lives and of course, you want to figur it out and make the best you can
Another part of this condition that makes life hard is having to sit in a dentist's chair, or long wait times at a doctor's office, or waiting for exams, and hoping not to have a nausea/dizzy spell during the wait. Worst fear is getting any one of the above symptoms and being trapped in a room full of people.
My heart goes out to the people dealing with this illness. I stumbled onto this video after dealing with fatigue from COVID-19. I can't imagine having this fatigue for more than a few weeks. I hope they find a treatment for you all soon.
Im glad you are feeling better and that it only lasted a few weeks. M.E. is a devastating illness. I wouldnt' wish it on my worst enemy.
I'm sorry about my beautiful mom, who's struggling with this sickness. I didn't first understand how she feels when she's not well but now I do. May jehovah bring the new kingdom so we won't have to keep suffering.
Amen!
Hi Sister!! I'm from south central Pennsylvania, and u?
Yess Jehovah, our creator, will restore our health.
hi sister amen for sure. from florida
👏👏👏🥰
YES, you named them and I've had most of them I'm 62 now and got ill around age 12, went down hard at age 19.
Bless you and thank you for even making us feel seen. All the best to you as you navigate and recover to the fullest extent possible and same to everyone here!
I was diagnosed 14 years ago but my M.E. / discontinuation syndrome was triggered by a rapid anti depressant withdrawal and reinstatement. I get a really weird symptom where my nose becomes stuffy like its acting like I have a cold if I over do it.(I've been told this is my mast cells acting like they're under threat) However that is one of the easiest symptoms to deal with! I use a mobility scooter and e bike. Anti depressants ruined my life and mobility. 2 hours meditation a day really helps, eating clean and pacing but I'm not cured by any means. Its absolutely relentless to manage. Big love from Scotland
I also get that sniffly nose, blocked sinus thing that feels like a cold is coming,along with excessive sneezing
@@skinscapetattoo yes had to have sinus surgeries.for this but I've found out I have Asperger's and hsd and add genetic effects histime in the body
Emotional lability is a big issue with me.out of control emotions and emotional vulnerability
Thanks for the conversation
Thank you! I have a strong opinion that my ME was triggered by SSRI withdrawal, and I did it over a six month period. It was Paxil, known to have among the worse withdrawal symptoms, and I felt like I was going crazy. Always good to hear someone else with a similar situation. Blessings on your recovery!
Yes, psych drug side effects triggered my ME and withdrawals finished me off. Not sure I will ever recover until I have recovered from the chemical neurotoxin damage.
Story of my life. All 20…All the time. It’s… a lot. I don’t have a life outside the home anymore. Nor do I have the brain power to imagine one. I’ve lost so many friends bcuz I’m constantly breaking plans. So grateful for my husband tho, he is super supportive and kind. Don’t know what I’d do without his help. Hold onto those who love you. Even if it’s just your cat. They make great snuggle buddies.
Let me know if my timing to comment is not good. I have allot of these symptoms for at least 11 years now - fatigued every minute, all the time slight dizziness that gets worse with fatigue until I'm close to passing out, erratic sleep & sleeping problems, depression/anxiety, migraines often (20 yrs), tightness (face, neck, shoulders), skin breaks easily, gastrointestinal issues, etc. I'm past 65. I've had no social life except for 1 person for 10-15 years. If I take a shower, that's all my energy for the day. I'm especially unhappy with my location & city but also unhappy with my life (my no life) in general. I have tons of compassion for anyone suffering this condition. I must have the help of a wheelchair to go out - my 1 person in my life pushes me!
Have every single symptom then some. Feels like rigor mortis is setting in. Idk why I'm still alive or how feeling so weak like I'm going to die. Told your somatic and sent to a mental health facility. Nobody believes all these symptoms! Just waiting on the grim reaper to show up and take me out of my misery. I have absolutely NO LIFE left in me to keep fighting something no one See's feels or believes except the people SUFFERING! Feels like a terminal cancer you can't even get dignity to die in peace to help! SAD WORLD!
Had this illness since I was pretty young, about 11. My symptoms: constantly tired, sleep doesn't make it better, I get 7-8 hours then still need a 3-4 hour nap during most days, getting out of bed is disproportionately difficult.. Driving is somewhat dangerous due to intense drowsiness. Stress makes ME/CFS symptoms worse. More than light exercise makes it worse for a couple days. All chores are daunting. Moderately sore muscles. Dizziness, sometimes after getting up but sometimes completely randomly even when sitting. On good days I can do HALF of what normal people can do, on a bad day about 10%. Can't work consistently, income takes a huge hit. Doctors don't believe me about all this, said to get trauma therapy lol. I'm not making this up I just want it to stop. Definitely eczema stuff. Some joint issues. Blurriness in vision, dissociation too contributed to by stress and tiredness. Also depressive symptoms. On top of dealing with life... just normal life is hard. But this? F*** that.
!!! BRAIN FOG !!! Very intense. I can't do school and it's breaking me. I can't get an education, been tryna learn animation since 2016 without luck. My brain shuts down when I study. It's not fair 😢 my life is taken by something I can't control even with massive effort... this is stealing my life and there's no cure. I honestly get kermit sauciside desires over this all the time. I may cave eventually. I'm begging for mercy at this point... 😭🥺😔 If I had one wish of a gini I'd cure this no hesitation.
I know, it's totally shite way to live. Hang in there though - there has been a very rapid uptick in the science on this and there should be some new approaches coming soon (ish).
@aliceandrea7863 please don’t give up! I’ve only had this for 7 years but it is so hard sometimes. I can’t even get a diagnosis but I’ve been learning how some people change their diet and it might get better. I’m starting tomorrow with a CFS diet which is mostly healthy eating with no processed foods and no sugar. Maybe we can start together?
❤❤❤
Anulom vilom pranayam, please try this for few days, start very slowly then increase, it will definitely help in resolving issues
Great job! You are 💯. Those who don’t have it haven’t the first idea what it is like to live with this
This is what I have. I am 60 years old and I have every symptom every hour of the day. It’s really hard that my older children do not understand that when I say I don’t wanna go outside it’s not because I don’t wanna enjoy the weather it’s because I can’t enjoy the weather anymore. I am just too exhausted to even try. What makes it even worse is that I cannot longer work, so the bills are piling up on me. my rent is behind and the food is just too expensive to even buy. My life is just so so hard right now. I have just recluses myself because this disease is so hard to live with.
You just described me too, and so sorry you and all of us are going through this. This condition doesn't mix well with our peers (in my 60's) who are out traveling, doing hobbies, enjoying retirement. Most of my family are healthy and have energy that I can't even imagine. Life with this is a day-to-day existence, not being able to plan anything enjoyable because it usually means we'll pay dearly for even thinking about making plans. My couch is my friend. I'm trying to find solace in the simple things, like hearing birds sing - anyone who hears me say this thinks I'm 'depressed' - well no wonder we're depressed, they'd be too if they had this. Praying there is a simple cure to ME/CFS and soon.
Thanks for this. I was finally diagnosed with ME/CFS over 30 years ago after going back and forth to doctors, some of whom thought it was all imagined. Being treated as a hypochondriac by certain members of the medical profession was hard to bear. It's been a roller-coaster ride over the years and I have mild to moderate symptoms compared to many, yet even now at the age of 68 I find life is difficult at times and managing my life to minimise the 'crashes' I suffer from time to time is really very depressing. Sometimes I can live a fairly normal life, but at other times just about anything I do makes the symptoms worse. The odd thing is that if I have something like a cold or (as happened last year) shingles, the ME symptoms are less severe. One specialist I saw about that said that ME/CFS is caused by the immune system being in 'panic overdrive mode', whereas if it's dealing with an infection, it tends to concentrate on that and the ME symptoms actually seem less severe. But I always get 'kick-back' from the ME afterwards. On the plus side I initially recovered enough eventually to get back to work part-time and later did a degree and taught full/part-time for 10 years. My partner and I are fortunate enough to be OK financially and both retired early so that helped me to manage my life better.
Yeah that is totally me - the experience of infections and the kick-back. Also completely sympathise with the bit about being judged a hypochondriac - very depressing. Good for you for keeping on keeping on and doing stuff with your life. I became a painter which works well with the altered life rhythms.
Buzz, it’s just the opposite for me! I contracted h-pylori on top of CFS, and it almost took me out. So glad I’m still here.🌻🥰
Whooow thank you sooo much for your comment, this is something I noticed within myself but I thought I was crazy because all the docters and medical experts look like they have seen a ghost if I seek help for my symptoms, what you just said helps me so much in validating my own experience in this world where there is no recognition for it.
Ive had ME for years ..but before doctor told me what was wrong i cried. I thought i had cancer .ive has reynards since age 5 ...?then i started getting insomnia at age 16 then ibs ...crippling pain .watching this has been a relief .but still in the uk...there is no help .so thank you for this
I've never heard of this! I've had health issues since I was a kid. I was always tired but as I got older, it got very bad. I have fibro, sjogens, gastro issues and was just diagnosed with EDS. My daughter was diagnosed a few years back. My joints and spine are shot. BUT the exhaustion. I can't move. I worked full time and slept until 3pm on my 2 days off. Holy moly! I have EVERY symptom you've listed. I went on disability in 2011. Now at 66, I'm in horrible pain. They cut back on my pain meds after the "crisis". I was just hospitalized with CHS after being awfully sick for days. I just got new glasses and my eye sight gets blurry. This is crazy that no doctor has mentioned this. The muscle pain, under scapula pain is bad. I wierd rashes out of nowhere. Thank you for this. ❤ ❤
What I did was I forced myself to start cycling even when exhausted. First a mile, then two, then five, every other day. Eventually 10 but only on flat ground. Then 8 + plus walk 4 miles, then another 8 back home. Eventually in a year I could do it every day. But it took a year and doing it religiously every other day. Still tired afterwards but not as tired. It takes persistence for even a little improvement. I also believe sweating somehow helps. On thing about cycling it wakes you up, even only for a few hours.
Dark circles under the eyes and ridges in fingernails are part of it too. One doctor told me it was "just deconditioning".
Not deconditioned! ME, severe asthma and COPD... all finally diagnosed after I went on permanent and total disability. The fatigue was attributed to dealing with my orthopedic dysplasias from birth. At least I was believed because of them...
Some more symptoms: muscle spasms (like a really severe cramp that loosens and tightens really quickly)- these can go on from 1 minute to 20-30 minutes. They are excruciatingly painful. The first time 1 had one I actually thought I was dying. I was 19. Any muscle can get this, even the tongue.
Extreme weakness. At my worst, I couldn’t even lift a spoon.
Uncontrollable shaking- when I first got sick, this would happen when I was pushing myself. It would start as a small, unobtrusive shake and sometimes get quite extreme and obvious.
Oh, and constant infections! Colds, throat infections, chest infections, conjunctivitis, sinus infections, candida….
All the “have you tried this or that” “you just need to exercise” “maybe you need to try harder to build up your stamina”. UGH!
"No wonder youre Ill, look at your lifestyle! You never go out, you stay up all night. . "
If you'd lose the weight you'd feel better,!!
You laid it all out perfectly. I’ve had CFSME since the 80s and was officially dx in 2004. Even decades later it never ceases to amaze me what a serious illness this is.
in the UK it was known as Yuppy flu and that label has stuck to this day even if folk don't know the term. In the 80's it was associated with certain lifestyle choices and, of course, laziness.
Thanks for sharing, I have a friend with ME and I'm trying to learn how to support as best I can. I have MS so I understand some of what your saying. Keep fighting soldier 🙂
I think I can speak for all M.E. and MS sufferers...We really appreciate friends like you.
Truly appreciate you for supporting your friend ❤
You’re such a good friend.
You know, just acknowledging the reality is enough and maybe laughing along to the brain fog, sharing the coffee making and so on. To me, feeling like we are in this together is the best help ever.
@@santipolo1963Im in this with you, Love and understanding to all of you!❤
All 20+, all the time for over 30 years. Thanks for bringing awareness to our issues.
This sounds like me everyday, and I've been going to several doctors and specialists for over 7 years without diagnosis other than fibromyalgic pain, restless leg, peripheral neuropathy, muscle tightness, cluster headaches. Thankyou for posting this video.
Have you got hypomobility
Oh man, as if this video wasn't enough, every single comment feels vindicating. I feel like I'm in therapy reading some of the comments
For people who don't know what M.E./C.F.S is you should say the words at least once. Thank you for talking about this illness.
Hey there, in the comments there is a pinned linked with more info on ME/CFS and linked videos that go into what it is. 😀
my eyeballs are bulging because I have been seeking answers to my crazy symptoms. I have every single one that you listed and I NEVER HEARD OF M.E. BEFORE THIS VIDEO!!! I WILL LOOK MORE INTO IT. THANK YOU FOR YOUR VIDEO!
I have had ME for decades. No one seems to understand. I really appreciate your desire to educate, as well as your ability to not only list the symptoms, but also your sensitivity in conveying how it effects our social life and that we DONT WANT to lose our ability to live a life! This is not a CHOICE! Thank you for this video, I felt your empathy for M.E. sufferers.
What is m.e
Finally, after telling the Doctor this for years and years he said that sadly, ME often goes together with Chronic Pain, which I also suffer with.
Wait wait wait. You telling me that this isn't normal? And I'm not grumping for no reason? And I'm not just super lazy and should do something with my life, go on fresh air do something? I just want tro cry now. I've been sleeping almost all day for the last 4 days couse I can't deal with the fatigue anymore. I've always felt tired no matter what and had a lot of this syptoms but now I feel like I'm on the edge of exhaustion. So I started to looking for tips or supplements and happen to found this video.
I don't know what top do, I don't know what to think. Will do more research for sure.
Thank you for talking about this
I've been on a medical rollercoaster for 2 years trying to get a diagnosis, its been FMS, CFS, Sjogren's, not CFS, AL IN MY HEAD, CSS, and finally last week...hey its ME/CFS! I have been left to fall through the broken healthcare system cracks, I have had to FIGHT for care, to be be heard, had family members tell me its just mind over matter, take some vitamins, lose weight, get some exercise - I carefully manage all of these things and try not to let stuff overwhelm me. Its a tough ride at this carnival for sure. Thanks for your videos, ive been watching them for a while. On the plus I am feeling much improved ATM, and have been educating myself on how to care for myself how to fight for myself, and how to listen to myself, thanks for all your hard work x
Im glad you are feeling better! Yes, It is very difficult to deal with all those things while being sick.
@@fight4me747 Thanks well im feeling ok for now at least, but I had fatigue in my younger years after EBV too, so it will likely come back again at some point, sigh. The last doc said he thinks its multi-factoral which it probably is, so every little bit I can do to help my system is a step in the right direction, like if you have a bunch of things that are a little out of whack - they can all add up to make you a lot out of whack - if that makes sense. I also have hashimotos so its sort of hard to know whats causing what sometimes, but 3 years ago I felt like I was litterally dieing! its been a long and excruciating slow crawl back to the point where I can function (if i take it easy) x How are you doing?
This is a trip-- you don’t want it to be true. And everyone is telling you to get up get a job, do this and do that and you used to and CSNT pr can’t consistently so it’s very confusing and invalidating and I just want answers and knowledge and ability to do what I need and not have to explain self . To know how to get through this
I believe mine was caused by a toxic mold in my home I lived in for 10 yrs before I knew it was there. I had 3 surgeries and just kept getting sicker and sicker and couldn't wake up with literally 7 alarm clocks around my couch. Then a chiro fractured my spine and working on it destroyed me. I wasn't getting proper health care. I still have serious issues with rust, dust, and mold. Certain kinds though. I had the perfect storm in Nov 21.. tonsillitis, flu, bronchitis, pneumonia then covid. All in one month. I had both vaccs. I got again in Aug 22 and I've gone completely down since end of Nov beginning Dec 21!!!! They wouldn't give me a booster, flu shot or pneumonia shot because I am always sick with something stupid. So I got covid again in April this year! Wow now everything is just so random and I don't know if I'm coming or going. I refuse to drive when I feel so dizzy and nauseated and disconnected from my brain now body too. My boyfriend just had a total hip replacement 20 days ago and he's angy I can't go over and help him all the time or even just a few hours every evening. I can't I just can't I try but my body stops me
Imagine you have been in a horrible car accident and every muscle in your body is horribly sore, also you lost a third of your blood, plus you hit your head and you've got a concussion. Add to that you had a bottle of vodka before the accident and the hangover that comes with that, and now you have a bladder infection. Then you are just start to feel better and a WWE wrestler pushes you down a flight of stairs, twice. Then people tell you that you look fine. Yup, that about sums it up, I think, what did I forget? I can't remember, what was I talking about? Whoops, I have to lay down before I faint, bye.
LoL that's accurate
Sadly very accurate.
You obviously have a keen storytelling ability along with a good sense of humor. Thanks for a pretty perfect summation!
Just perfect description!
35 years of that and at 88 am told how wonderful and beautiful I look.
I smile and listen to other bitch but I YAWN AND GO TO BED AND LIE THERE NOT MOVING
pain pills only made me dizzy and nauseated.
I am surprised I am still alive and smiling.
It is near impossible to really comprehend what it means to have debilitating fatigue, unless you have experienced it. Having had Covid taught me a lot about CFS. It lasted way longer than two weeks; several months for me. It’s been only recently that I’ve felt my activity levels return to something like “normal”. Thankfully. But now I understand what having long Covid or Chronic Fatigue Syndrome might be like, but for way longer. You want to do things, but there is no way…….no way…..you can get up and do them. Ugh !
I have it. I have been in bed for 2 1/2 years now. I wish I would wake up from this nightmare. When I wake up, I am still so tired that I go back to sleep for many hours. I get confused. Pain on a daily basis is present. Always dizzy. I feel as if I wake up drunk.
Oh yes, one day I've described my conditions as 'a chronic hangover'
@@SuharikMetalI haven’t been diagnosed with anything but this is exactly how I have felt for over 15 years. Every day feels like a hangover.
@@xAWTxREDMIST same. No diagnosis and 10 years of suffering.
Did you try to figure out auto-brewery syndrome? If you have that hangover-like feeling, you should definitely check it out.
Not my case tho. I even did the special diet, felt a bit better, at least I did not sweat like a pig all the time, but nothing life-changing unfortunately. Well, I heard that paleo-diet, meat-eater approach and stuff also could help with CFS symptoms, so idk, maybe it was the case
I have debilitating chronic fatigue from different medical issues. I can’t do many things I would like to. I can’t imagine what people with M.E. go through. My heart goes out to everyone dealing with it, and I hope you can someday find relief.
I needed this post today, I e had a bad flare of M.E. Over the last 5 days, it helped to refresh my memory of how my fibromyalgia and chronic fatigue affects my life. I try to ignore it and push on, but I really overdid it the last month and I’m really paying for it now. I can’t even go for long drives because I get ocular migraines and not only does your head hurt your blind ;
I have almost every symptom you mentioned, I’ve had them for over 45 years, younger I could push through most “acting” as normal as I could in public. One of my biggest symptoms is Odors, they can set me off big time!! Thank you for reminding me I’m not alone.
I’m watching this after passing out for 3 hours after 2 chores. I’m not formally diagnosed because I can’t do the work up required to rule out other illnesses, but having almost all of these symptoms is really validating. Thank you for bringing awareness to this.
Of everything I think the hair loss and digestive issues are probably the most upsetting. I'm not sensitive to sound per se, however I no longer get pleasure from listening to music. Hard to explain. I just avoid it as much as possible. And mirrors, lest I catch sight of the "m.e face"! Not all bad though. I took advice from a fellow sufferer: "stop, drop, relax." Try not to do strenuous things all at once. Rest when you want to. Hard when we've been programmed all our lives to "ignore and push through." Understanding my body is trying to help me, I'm actually enjoying life more than ever. Sleep and brain fog has improved so I can make jewellery and hopefully make some money. I don't miss the gym. To those who may judge: I'm not lazy and I don't owe you an explanation. Life is good when you don't care about what other people think.
You might care if they told you everyday for years on end.
This is a long shot since it's an old post but I might have something that will allow you to enjoy music again (I have all symptoms listed plus some, I also was not able to enjoy music). The fix for me was... THC. In CA cannabis is now legal and when I take a low dose (generally a 5mg gummy) I am able to enjoy music again. Not saying it would work for everyone but it sure is a nice change when it does.
Along the lines of the sleep dysregulation when I first got sick I could not stay asleep for more than two hours, despite being exhausted out of my mind. It also triggered a circadian rhythm reversal that I have fought for 15 years. This past year I fell into a hideous phase of staying awake for 30 to 48 hours at a time and then sleeping for 16 to 20 hours straight!
I'd like to add a few other symptoms. Shakiness and a sort of inner trembling; extreme pain on being touched; being unable to put a sentence together.
On top of all these is that I cannot get comfortable, at all. I truly feel my life is just not worth living anymore,I fight that every day.
Thankfully I have a good sense of humour.😊
I’m so glad I found you! Subscribed right away! I’m in tears, never have I felt more understood. I have most of these symptoms and am just now getting a doctor to see that I have ME/CFS. I have lost so much because of this. Currently I need a lot of dental work but because of the awful vertigo I cancel appointments a lot. Have to sell my bike too, I used to love riding my bike😢
Thankyou for taking the time and effort for making this video. Such an isolating condition with little or no understanding by others, professionals don't believe or take us seriously. You simply cannot understand unless you have experienced this debilitating condition. We are not weak, lazy but in fact the complete opposite in another lifetime before this took over. Bless the ME community. 🙏
Almost 42 years of ME for me and I thank you for your videos. The only comment I might make is that yes, heat intolerance is bad in ME, however, mine is only with weather heat and the heat of showers, hot baths and a sauna are things I cannot do without. Not only do they not make symptoms worse they are the only thing that helps me through the body pains and the sauna is the only way for an ME patient to sweat and get rid of toxins. It always helps.
My worst symptom is crushing pressure on my ribs by noon every day. It feels like a vise is ever tightening around my ribcage and it tightens so much I can hardly speak or swallow then it begins to lessen by evening.
I use lorazepam.
@@KidCity1985 I'd sure be careful using that its side effects are pretty bad. Anyone taking it for anxiety may I recommend taking GABA instead and you can take quite a few of them until they are effective and it does build in your system so after reaching a good level you can usually maintain it with two at bedtime.
@@katb6981 I take it for nerve pain, not daily. Gaba did nothing for me.
@@KidCity1985 True Gaba isn't for nerve pain, for that I use cannabis. Thankfully I live in a state where it is legal so grow my own and make infuse it in honey. Just a 1/4 tsp helps with a lot of pain, nausea and even migraine.
@@katb6981 neither did anything for me.
Dry sore eyes, itching and burning feeling in the eyes and skin. Thank you for this video, it’s kinda comforting to know you’re not alone with this.
Thanks, I have given up saying I am tired, I tell them that I am to tired to breath, it requires concentration because the autonomic system doesn't work well. I have had me/CFS for about 65 years although it was only diagnosed about 6 years ago.
Another strange thing that happened was a sudden aversion to meat. I did not Eat meat for the first 10 years and then slowly over the past five years I began dabbling in occasionally eating chicken. I also developed a sudden aversion to alcohol, not that I drank very often to begin with, but it was bizarre how the very thought of it made me nauseous! When commercials came on it would literally cause nausea to just think of the smell of it. I have not had a drop of alcohol since I got sick 15 years ago.
Another thing was a heartbreaking sensitivity to music. I could not listen to anything because it reminded me so much of life and made me cry. In the past few years I have began occasionally listening to music again, but it’s still evokes a lot of emotion!
I've found I prefer either classical music (gentle, no crashing cymbals or drums) or music from the 70's when I was young and happy and full of beans.
13/21, plus sensitivity to smells. Depression as well; not so much a symptom but a consequence of the changes I had to make in my life because of the disease.
I don't know anyone else with the same condition in my country, my doctor has more patients with ME/CFS but support groups are not really a thing here. I am grateful for videos like this, and for the chance to connect to the people online going through a similar experience. Hang in there! 🤗😽
Another thing that happened very early on was breaking out in profuse sweats. I mean, literally changing my pajamas, every hour at times which resulted in wet pajamas - (since that’s what I live in) hanging everywhere to dry them out- so that the house looked like a Chinese laundry!