Rashes, skin feel like it's getting burned by a blow torch then being rubbed with sandpaper, and the spine pain along with the shoulder blade muscle cramps, the I C , moody from not sleeping and not being able to clean my home and do gardening, cooking and eating, the list is long .
optic nerve cramps as sucks your eyeball into your head and theres no way to ease it , chrondilitis (rib muscule swelling and ripping or bad cramps, you can drop a dress size so not all bad lol) and when your chest lining swells up coz it feels like your lungs are encased in wet sponge, All of these are difficult to elivate . I also wanted to ask your thoughts with M.E/ C.F.S and scarring on the brain stem as the humminbird insitute has found that all suffers have this . For context i got this at 10 years old after a very high fever , i was given a diagnoisis at 20 and im a 45yr old female .
22 years for me, it’s a life killer. I’m nearing the end of what I’m willing to tolerate and fight for. There is no end of the suffering that I can see anymore.
Its especially brutal if you dont have anyone looking out for you, which is why capitalism sucks so bad, the millions that must suffer with this with no hope, stay strong, find a life worth living
13yrs for me, bedbound since 2016 with Fibromyalgia & weird (extreme)neck spasm that I believe is Dystonia, it’s difficult to breath & speak in my normal pace, my short & long term memory is extremely bad & I have the MS hug symptom (I suspect MS) now & issues with the gut IBS, horseshoe kidney that has caused 4 kidney stones , I also have asthma (which is ok, however breathing normal while managing extreme pain is impossible & especially the pain in the neck/back area & difficulty raising my chest up & down & pain in the upper part of my stomach(supposedly gerd, use meds that help a little with the upper stomach pain) possibly issues with thyroid etc I have so much fatigue, pain, seizures & don’t get the money or helped I’m entitled to while not getting the support I need from friends & family...
Julian, it takes lot of courage to fight it so long, so salute you! I am taking lot of positive energy from you. Please consider LDN if your doctor can prescribe you. In India we do not have such possibility, you can try as I have seen in many forums. Hope you will get well soon, from bottom of my heart! All the very best.
I suffered from it for a long time too but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
Have been through this pretty much all of my life probably from age 12 and now I'm 61. It's like you often almost get punished by confusing, debilitating or randomly changing, scary, repetitive symptoms anytime you try to think or do something. I just pray people begin to understand it and not punish their loved ones. it's hard enough to survive at all with this, to afford survival, to live in poverty & destroyed potential - moreso to hold the high dream of somehow miraculously managing to afford help to grasp at some relative wellness. To live with this when people don't understand is crushing. Not trying to break anyone's heart here. We who suffer are already broken, but working to stay positive, alive. I just want anyone close to a person with this to know, understand & to be able to get it.
Hey, you can recover from cfs. I recovered after only about a year. I would look on UA-cam about recovery and try to implement some of the stuff there. Best of luck!
Doctors say everything is depression or anxiety! Mine did but now we are unearthing more positive test results and labs. I thought being COMPLETELY honest to people about my struggles would help. Nope. STILL after a while having to prove yourself gets too irritating. People look at you like your either crazy or your faking it!😢
Yes! Im SO sick and tired of having to explain and try to prove my daily hell, especially aince the end result is still being judged and not understood, and accused of being hypochondriac. If they would live for only one week in our body, so they can get it once and for all.
After 10 years and numerous surgeries I developed fibromyalgia/ CFS the lack of understanding by those you expect to support you is one of the most heart wrenching parts of the entire situation Isolation, and depression are definitely a by product from lack of support besides our innate response to always fight to get better I have done this whole psychological acceptance In order to not to feel so defeated Fibro warriors are the strongest people on earth!
It is utterly exhausting on a daily basis to either hide it all away & find the energy to fake it in front of others, or to feel pressured to explain why you are sick one day & not the next.
It’s amazing to be validated! I think the best way to describe the fatigue to ppl who don’t have it is to imagine working a grueling 10 hr day of hard labor. You go to bed and knock out and then have to get up and go pee in the middle of the night. But imagine instead you’ve slept 14 hrs and you still feel that way. You just want to go back to bed but you have life to do. Every free moment is spent sleeping. You’re kid goes on vacation with your sisters family for three days and you imagine what you can do with 3 days of freedoms from a 3 yr old. But instead you decide to take a nap. Then you wake up 3 days later when she’s brought home, just as tired. You haven’t eaten. You’ve done nothing but sleep, drink some water and go to the bathroom. It feels like you slept 20mins. That was me at my worst. A new single mom still breastfeeding and you wake up one day but don’t really wake up. And it never goes away. I’m better then I was from changing my diet but it’s still not good enough bc all the joy gets sucked out your life bc your always exhausted. I try and stay positive bc at least I don’t fall asleep on my feet anymore. But I still feel worn down by this illness and the lack of knowledge of the drs I go to. I actually got better the most on my own after giving up on Drs when they kept asking if I thought about seeing a therapist. Also the closest I ever came to punching a dr.
As Dr. Majid Ali said, a disease does not exist until there is a drug for it. One day there will be a drug for it and suddenly MDs will enthusiastically say CFS exists.
👌👏👏👏👏👏 ✨ 👉 Totally agree w/your comments & experience... Then add Chronic Lymes, Lupus, CIRS, ME, Fibromyalgia, Spinal Fluid Leak, Cervical Spine Damage & Instability, serious Spinal Stenosis & Spondylosis, Vascular Ehlers-Danlos {extremely fragile Veins & rigid Nerves} Articular Sclerosis,, POTS, Deep Vein Thrombosis, re-occurring large Tumors, horrible Autonomic Storms, Tinnitus, Neurological Sleep Apnea, Enlarged Congestive Heart & Mitral Valve Prolapse & injuries from being assaulted & ignored by 6 Drs for over 6 mos~!!¿!! Add to to this: Environmental toxicity that has pervaded our homes, lungs/health & community for decades from a 100 yr old known issue from an over expanded, immorally mismanaged metal foundry & other decades of 100's & 1,000's of Tom's of cumulative highly TOXIC heavy metal concentration of plating & aluminum processing plants that have been habitually & nefariously catered to w/public tax $'s, tax abatements & hefty utilities discounts that are not 9fderd to those of us who are struggling from the highly toxic affects of these highly profitable & immorally-run corp,{ses}, their CEO's & CFO's & legal eagles {look-up what the word 'legal' & compare it to the definition of 'lawful' & you will have an 'awakening' to what those who 'created' this system have in mind & WHY we are both so physically sick & disabled & dying earlier & from more 'unexplained' & not-so-'myserious' deaths & are then financially devastated seriously 'under regulated' by EPA / IDEM & our local health depts & 'corp.{se}' medical Dr.s ~> ALL 'corp/big pharma-influenced & restricted 'practices' & operating under immoral, unethical, careless & often highly questionable, dangerous, haphazard, radical &/or unproven protocols becoming known for their "LACK" of empathy, human compassion, moral ethics or conscience, integrity & accountability~{w/very few 'rare' exceptions'!} They seem 'void' of any human emotion or traits & lack the very essence of what we seek medical help for~& are less & less interested in listening, consider what is being expressed & suffered & take their very ill patients seriously...& "DO NO HARM"...NO interest in doing thorough physical examines for seriously ill patients, or even listening to your lungs & heart w/an enlarged congestive heart & mitral valve prolapse or any of the other afflictions that have increased & multiplied making life so difficult to navigate from day-to-day... No interest in seeing chronically I'll & disabled patients more than 3 or 4 times & 'farming' them out to 5 or 6 other 'so-called' specialists ~ that most of which are so egotistical & narrow-minded & not interested in sharing findings or assumptions & the info & results they obtain...just getting copies of MRI's & access to things like 'my chart' is a joke & getting more & more difficult & when you do ~ you often find that the Dr. either wasn't telling you the whole truth or mis-read/mis-interpreted the results which they will argue & project other unfounded behaviors & negative attitudes onto you ~ if you point this out & expect them to correct their serious oversights, carelessness & yes 👉 "mistakes"...they make them far more than they used to 30-40 yrs ago & our quality of healthcare is 👉 NOT improving~!!! Moreover it is disintegrating, OVER-PRICED, OVER-RATED, RADICAL, UNAFFORDABLE & INEFFECTIVE 👉often causing "MORE" serious issues than you initially had...& "MOST" of what is making us sick ~👉 is making corrupt corp.{ses} & their Dr.s & the CEO's & executives of those operating under corrupt monopolizing 'corp.{se} status's... They are not patriots or upstanding I'm individuals...can't & won't even 'look you in the eyes when you have an appt...too busy looking at their computer screens entering derogatory & unfounded info to corrupt your medical care & records & 'protect themselves' w/false & careless documentation should you call them out & want REAL, SAFE & EFFECTIVE, AFFORDABLE HEALTHCARE or "have educated yourself far more than what the Dr. is willing to 'acknowledge' & note ~ which these days...isn't much ~ from my 50+ yr experience~!! ...& Getting worse~!! No concern/'NO fault'/No conscience or empathy attitude seems to be the 'REAL epidemic' in our govt., educational & medical systems, EPA, FDA, Medicare, HHR, CDC, NIHAIDS & others...not protecting 'us' & don't care & not properly following-up on a 'timely or efficient basis' & we are as a result ~ then ~ subject to an ineffective/insane/inhumane & non-functional 'system' also sorely 'under-regulated' & not 'reigning-in' / calling-out & holding accountable these CRIMINALS & CRIMES AGAINST HUMANITY... We are slowly waking-up to the TRUTH of what is really making us sick & what's more: Our Dr.s are facilitating & fostering it~!!! {But, for a rare few 'gems' like this fellow & there are many using social media & the internet to get the Truth out & reach more people than they would in their general field of medical 'practice'... {A 'key' word...why be 'practiced & experimented-on' when their are "Medical/Patients' RIGHTS" & much 👉 BETTER / SAFE / PROVEN & EFFECTIVE NATURAL PROTOCOLS & THERAPIES that most corp.{se} hospitals & medical practices REFUSE to ACKNOWLEDGE ~👉 or HONOR ~👉 or RESPECT their PATIENT's WISHES, REQUESTS & RIGHTS ~👉 contributing to more needless SUFFERING ~👉 & you really have to ask yourself "WHY"~??? We "KNOW"...just been in denial & deprived of quality medical/healthcare for so long...it has become a sad reality & way of life... My question is: WHY are WE paying for ALL of this gross medical negligence & WHY aren't those responsible for making a 'KILLING' off of making us so SICK & DISABLED~??? Shouldn't the culprits & those content & catered to in these undeniably 'corrupted & broken' systems be held 👉 "ACCOUNTABLE" for the pain, suffering & lack of moral ethics & integrity be the ones FOOTING the BILL~ & forced to clean-up their act &/or be prosecuted for their obvious CRIMES AGAINST HUMANITY~!! WE NEED TO ELIMINATE this systems & procure & create a NEW & BETTER ONE~!!! AMEN ✨🕊️🙏-ing for better days, better health care & PEACE of Mind, DIVINE INTERVENTION & JUSTICE for us "ALL" ~!!! 🕊️✨💜✨⚖️✨🎆 🙏 😉
☝️...More A.I. glitches☝️in 'typos'☝️ appearing in comments... {Surprised it even allowed to post~!¡!} As there were 👉 "NO TYPOS or ERRORS" in my "ORIGINAL" composition & POST 👉 until I 'posted' it...¿?¿ Don't you long for the days when you could 'count-on your own abilities' to type 'accurately' & spell-check 'actually worked'~??? ...& You 'knew' once you 'proof-read & edited' your text or email info...it would be sent & / or posted as it was "originally" typed & submitted~??? Those of us, who are very 🤢 ill, disabled &/or the most sensitive & outspoken & trying to SPEAK the TRUTH & share our experiences & medical / healthcare nightmares & demand JUSTICE are the 🤐ne's being 🎯 'targeted'~😲¡!¡ ✨😉✨⚖️✨🕊️✨🎆 ...but, a day of reckoning is JUSTICE IS COMING~!! I trust & 🙏 pray we live to see & experience this ~ in ALL it's GL🎆RY~!! Amen~✨🕊️✨💜✨⚖️✨🎆
I am 66, I have been experiencing most of these symptoms after contracting Mono or a form of Hep after working one summer in 2 different restuarants when I was 19 years old. Had a few Dr.s blow me off, tell me to exercise more, or take a vitiman supplement. Contracted Covid twice during 2020 and ever since that time, I feel as though I 've aged 20 years. My world has turned upside down due to this illness CFS/ME and personal stress. As you stated in this video, people get tired or hearing about what you're feeling and write you off as a hypochondriac. It gets worse everyday, and I have reclused myself bascially from the world. Seeing a new Dr in a few weeks, and will have to go through the entire process of explaining my symptoms again, and really feel like, " what's the point ", they won't believe me anyway. I was diagnosed with Hypothyroidism since the age of 35. Was doing well for several years until divorce stress, raising a child without financial or emotional support from his father, and of course Covid in 2020. This is the most detailed video I've seen, and reinforces to me that I am not lossing my mind or crazy. Thank you for your work.
Look up, The Perrin Technique. I have the same thing, & it’s severe. I want to try Dr Perrin’s technique. There’s sound studies backing up his original discovery regarding our lymph vessels. Look on UA-cam 🫶
Great video, 4 years ago I got CFS. Changed my world. Yet the people around me still don’t want to understand. Make me feel worse about my self every day. Praying I get better soon. I feel like a zombie.
I'm so sorry Rosey I've had for 27yrs. And still people do not get it it's hard enough to go through this horrific illness... without no one but others like us will ever get it hang in maybe they will get a cure for you soon 💙🙏
What I've noticed is that the doctors automatically say your depressed well heck yes I am and it's because I'm so exhausted. Situational depression. Depression medicine is not going to help at all. Why? Because it's situational depression unless my situation changes depression medicine is not going to help! Wish that doctors would understand that!
Me too! I went on anti-depressants for three months - They just made me numb mentally and unable to express emotion. The thoughts and patterns were still there. It was a very confusing feeling.
😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭 This is my life. My soul is so sad. God have mercy on me and anyone who is affected by these horrible symptoms. 14 years of this and getting worse. Thank you sir for this video.
I am in the same shape, I am 57 now .Had this since I was 12 years old. It hurts when people , neighbors call me the weird person. No one understands. I often want to just give up. God bless you,
I’ve been on this CFS roller coaster since summer of 1990. Came down with “the flu from hell”. Severest symptoms aren’t as bad, but I’m no where near living what most would consider a normal life. Symptom treatment is all the medical treatment one can hope for from the medical community. It helps but there’s no “magic pill”. It can wear you down. Support groups can help. Back in 1990, I felt like I must’ve been the first person to ever have contracted it. But suddenly, I found I wasn’t alone when watching a town hall meeting on local television. People like me were there. Telling “our story”. The relief of hearing others stories made me feel so much less alone in this. Thank God the stigma has lifted a lot since then, but there’s a long way to go, too.
Me, too since 1991, after being hospitalized for meningitis in October 1990 (after getting tetanus/meningitis shot in order to receive stitches for my cut finger)…… the psychosomatic/ depression position from doctors cause victims to continue to do more than they should or can. Gaslighting. All a diabolical test run by people like fauci….
One day 25 years ago it was like i had an on/off switch and someone turned me off and the symptoms hit me like a steam train, i have lived my life as long in illness as i have in health and doctors have been useless.
Well put regarding "on/off switch" but aint that like many diseases such as cancer. One minute were fine and the next we aren't. My doctor prescribed cyclobenzapr for night and then we are going to try Savella for day time. Hope you can get help with your symptoms!
Something hurt you very much twenty five years ago and you stuffed it.? Did some one betray you ? Is it bitterness ? Hate, unforgiveness ? Are you withdrawn, alone in most of your life? Are you suspicious ?? about others and then scorn them with your opinion..? Do you talk to yourself sometimes in public and then feel crazy? Do you think your ugly and your body needs fitness...? Do you keep company with negative, opinionated, know it all accusing people ? Who are sick because of the secrets they keep...? Are you using anythig that alters the mind ? Side effects of Rx too..Are you Stuck ! You might be carring a burden..hanging around sad sacks or just unforgiveness and bitterness... Just tired that life is hopeless sometimes..YOU are a buman, not junk..let go of that resentment and unforgiveness ! You cant change that, you yourself have hurt others, most of us have.. All it does is poison you mind and soul and compromise s your focus ! Let it go, look around some people want to love you for free and God does too.. Take care.. Its over let it go ! Some people want to love YOU
I feel like I'm suffering from this because of covid 19. I get chills, sore throat, mild fever everyday. It's been several months. I hope for the best for anyone who's affected by this
I say ANS dysfunction happened to you! Have you seen the videos explaining how the symptoms get created? - ua-cam.com/play/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE.html
I was diagnosed with ME in 1993, this video described my conditions symptoms 100%. Then worse thing is and has been the total lack of belief and understanding from the medical profession.
I had a doctor tell me I can’t be that bad becouse I walked in. Cause they didn’t bring me in on a stretcher. I was so taken back I said nothing and just walked out. If tbe next one does this I will chew tbem out
Since 2018, and I finally got the diagnoses of CFS/ME and Fibromyalgia. They’ve been testing and testing for years. Finally met a rheumatologist and neurologist that listened. Trying more to be better. I would love to even get back 50% to what I used to be.
Like thevideo says, best to check that it is just another cfs symptom and not some kind of sepsis or problem in the body caused by tooth \mouth infection .
I get this all the time! Chills without fever, also suddenly feeling like I'm boiling when no one else is hot at all. I had a long Covid appointment today where I was told this is caused by dysautonomia.
Nice video, but I it's missing some of the core symptoms, especially muscle weakness and/or muscle fatiguability. These symptoms are very important, because they help distinguish ME/CFS from "chronic fatigue".
no hypochondria for me thanks , was asking a psychologist if i were hypochondriac and she said that anyone who asks himself or herself this question definitely is not , hypochondriacs do NOT ask this question
Absolutely! But it can sure feel like it at times can't it!? We often think "how can so many things be wrong!?" That in my view is the biggest clue as to the root cause of the illness.
@@CFSUnravelled1 So, do you still believe both this and FM are caused by dysautonomia? I was thrilled to see you going that direction, since I have believed that to be the case for the entire 33 yrs. I've had them. I tend to see FM as sympathetic dominant and CFS as parasympathetic dominant, though we can have both if our ANS is dysfunctional enough. What causes the dysautonomia is then the next question.....any ideas?
My life was before severe /ME and after. Ambitious , sporty , perfectionist& driven. Was famous for juggling 100 balls at same time. On top of the world . After emergency c-section With a baby ended up in wheelchair! Yes it is all in your head, you have depression etc after 3 year of different diagnosis like MS etc told me you have FM/ME. I cried atleast knew am not crazy. I know now that I burnt myself & my body out. I lost my career as pharm D. Still no one understand & gets me. Still do too much for my family . This year became 50, and DT2 as well due to reduced mobility . My cortisol has been x20 normal levels and that makes it difficult to lose belly fat. If I could live in deserted island , with no responsibilities and no one to expect too much of me, I would feel better. I am never pain free even with fentanyl patches , SSRIs etc .
I have never heard of this condition but One evening I decided to type in all my symptoms of how ill I’ve been feeling for the last six months and this showed up! Everything that was on that list I’ve dealt with and more and I pray I can find a solution and get a new doctor.. thanks for this video!!!
So sorry. They Won't say fibromyalgia or cfs in my case because lots of insurance companies will not cover the treatments for any of it. I've been on this jo8for 10 years and various health challenges are what started it all from a severe back injury And you know people don't want to believe you have back problems EVER
Hi there no way this is cause my depression. You live a normal life full of energy. Then one day. You exhausted no energy to do. Things makes you ill. And depression always gets better with time.
I was diagnosed by Dr. Bell in Lyndonville NY when I was 5yrs old. I believe he was the first specialist to reasearch and put a name to this syndrome! This video was very helpful. It mentions that IC and a couple other diagnosis that I have go hand and hand. I didn't realize that! Thanks you for the information!
I live in Saratoga County, New York and I am looking for doctors who can diagnose and treat chronic fatigue syndrome. My symptoms have been long-lasting and debilitating. I would really appreciate it if you could recommend some doctors in the area, including a primary care doctor. Thank you.
Oh wow, you were in Lyndonvile for the 1985 epidemic? Dr Bell diagnosed me in 1999 when I was 38 yo. Miss him greatly ! Wish he was still practicing! Big hug to you! Did you get much better ?
Doctors and other medical professionals need to be educated on this condition as they simply don't understand it. Many dismiss it which is damaging. I've had comments like.. who on earth told you that and then rubbish medical professionals diagnosis of thus debilitating condition. Others tell you to just exercise, take vitamins and eat this that or the other, sharing their thoughts on what you need to do as if we haven't already tried all these things. People are clueless but there is NO awareness and very little understanding yet we are seeing more and more people suffering from this.
Thank you for making this video. As someone suffering cancer related chronic fatigue, as the treatments of chemo and radiotherapy were what started this condition off in me more than 4 years ago now. I pretty much tick most of the symptoms you mention in this video. Its good to know it is linked to this condition as I often wonder if the irritable bowel is to do with the chemo treatment, though it is a long time ago now. Thanks. Good luck everyone struggling with this condition and of course dealing with a world that either doesn't want to believe it, or if they believe it, don't want to hear about it. Stay strong in the face of it all. x
Have your thyroid checked. MAKE THEM do a Thyroid panel not just the TSH. My T3 was very low. Started on. N.P thyroid 2 grains that made All the difference. Had my cortisol levels checked also.good luck to you
A mirror image of my life for the last 3.5 years; even down to the I.B.S. You have confirmed everything about my health problems and their causes that the Haematology doctors and my GP do not want to accept. Thanks for sharing, and best wishes for an improvement in your health. - (I am now down for my first M.E. appointment, but still have to wait another 20 weeks!).
Glandular fever and tonsillitis 30 yrs ago, very bad childhood, depression, never recovered had good times bad times, swimming helps a lot, you have to find strength it’s not easy, I still suffer I have had 3 operations on my spin pneumonia and blood clots but I’m alive, happy day and sad days, this started 30 yrs ago as I said and I was very ambitious worked 7 days a week but partied as hard, my mum said when I crashed with whatever illness this is it saved my life. Sometimes I think I would had rather gone on till I did died than live with this for all this time, I am now disabled from a motor bike accident but I still fight, it’s just human nature to keep going. Have I thought of suicide yes many times but I won’t and trust me i felt as though I have reached rock bottom but I’m still here. Much love to you all that suffer whatever this infliction is.
It's a pretty tough illness and really critical to reach out for professional help whenever you consider any self-harm, so make sure you do that. But whilst there is no magic cure, people do recover from this illness, even after many years of being ill. Check out the recovery stories, hopefully you will discover some and hope in them.
Thank you so much! This explains a lot of my problems! I've been diagnosed with mixed connective tissue disease but I realize now it may also be chronic fatigue syndrome.
I've never been diagnosed with CFS but many of the symptoms there look familiar to me. Looks like CFS is a condition doctors are reluctant to give as a diagnosis because it's largely untreatable by conventional medicine. I just want to know why I'm always feeling like crap, every minute of every day.
I think I have all the symptoms but no doctor I've consulted here in the Philippines even consider CFS. I've undergone so many tests and procedures including for lupus, colon cancer, hypothyroidism, diabetes, HIV, etc but all are negative. Recently, I had to quit my job. I just can't go to work because of severe malaise and brain fog. It's like having flu without the fever. I'm tired of seeking medical help and explaining myself without getting definite answers and appropriate medication. I was even given antidepressants but these didn't help at all.
Same exact story here. The antidepressants didn’t work because that is not what you have have. Try telling them tbe symptoms are a lot like long term Covid see what they say.
Excellent video!!! Subbed. I've had ME/CFS for about 20 years, and have many of these symptoms. Finally, a channel which really pinpoints the symptoms, because many people who think they have CFS do not!! After so many years, I KNOW that I have this, even though doctors will not acknowledge when I present symptoms. Lately, as I age, (I'm 65), IBS, vision problems, PVCs, electromagnetic hypersensitivity, sensitivity to almost all foods, chemicals, LED lighting, and orthostatic intolerance has made my life almost intolerable. Sorry about the negativity, I'm NOT depressed - just have no choice other than going along with whatever comes in any given day. Some days are obviously better than others.
Yes Judy, shortness of breath & 'air hunger' are normally missed out as possible symptoms of ME / CFS. I have heavy bloating each time after having a meal (even in small portion), which aggravates my shortness of breath. Unrefreshing sleep, PEM, brain fog / short term memory loss, lack of focus / concentration, constant muscle pain, mild joint pain in the lower limb section are predominant in my case. Hope something works out, tired like hell of this disease.
Got a divorce at 60...first time Id ever lived alone ...was proud that i could do my own yardwork, rearrange furniture, take out trash...anything...about 5 years ago, amost overnight, it was like my body folded like a cheap lawn chair...everything hurts, eyes burn, pick up tge weedeater or trash and it feels like it weighs 200 pounds...cant get comfortable in bed...what the helllllllll
I've had the same primary care provider for the past 20 years. I'm doing my own research now because my symptoms are getting worse. I think I have CFS since I was a young girl. I have always had chronic pain in some parts of my body. When I was in college the only way I could study was if I came home, took a nap and studied as soon as I woke up. Now that I am in my 40s with kids.. I cant keep my house clean, forgetfulness, always tired, irritable.
Doesn't sound like me/cfs at all. it's an entire plethora of symptoms, pain, and actual exhaustion right through the brain and muscles. Trivial comments like yours are why people don't take this severe illness seriously.
the fatigue is like a battery- most people start the day fully charged- 100%- some maybe around 90% or even a bit less- but people with CFS start the day with their 'batteries' only at about 1/4 charge, some with only about 1/8 charge- and you wake up still exhausted- needing m ore sleep, but unable to get proper recharging sleep- and by 4-5 hours later- they are totally spent- and in need of a nap in order to recharge a bit more to have the stamina and strength to make it though the rest o f the day- some folks need a couple naps- just to get back up to the lousy 1/4% charge- with just a 1/4 charge, the energy levels quickly diminish and leave the body exhausted and too worn out to continue-- this isn't just a mild exhaustion- this is a deep disabling exhaustion/weakness- Try t imagine going through life with a constant never ending flu that leaves your body wiped out, weak, shaky, and exhausts you to do even the smallest chores- or to walk up a flight of stair leaves you shaky and weak for several minutes- that is what CFS feels like-
I have suffered with this for 10 years and every symptom has been recorded and the treatment stays the same with no lasting result... thank you for listing so many as many of us with cfs feel as though noone believes us.
It's crazy isn't it!!? I created this video to help spread awareness - hoped it might go viral, but it is still needing to build traction - let me know what you think : ua-cam.com/video/esml2z8gKFc/v-deo.html
going Keto has almost completely removed my ME/CFS problems in all of 6 weeks. Im 14-15 weeks keto now and loving life. no aches, pains or brain fog/ confusion and constant exhaustion completely gone. No longer hungry, no longer tired waiting for my next treat/ snack / meal have energy all the time and am functional again. i can still sleep 14 hours a day and feeling crap, but it goes so much faster and if i do have to get up"early" i can cope with it so much better now
Glad it helped you - many people find that a restrictive diet like that triggers them into a crash - so people react differently. Once you have been fully well for 6 months, feel free to contact me if you wish to share your recovery story. :)
@@CFSUnravelled1 I would love to do that. I haven't found the diet restrictive in any way it's more than mindset than anything else but coming from a already restricted diet being a celiac it really didn't bother me to leave behind the pasta and the breads and the pastries and pizza
15 years ago I was injured at work and never got better. Lost Everything! Thanks to my brother telling everyone I was Faking and a Drug Addict. I wish!
as I was watching this video, I realize this was what I was looking for. It’s been like this for me for over 20 years and now they’ve had it on rheumatoid arthritis problems with my balance swelling in my legs, not being able to stand for any amount of time without getting extremely dizzy worse IBS continual incontinence it seems like the list goes on and on finally somebody tells me that this list is connected with chronic fatigue which I’ve had for over 30 years I’m tired I’m 70 years old and I’m tired than I would ever in my whole life. Thank you for telling me so many things and know that I will be talking to my rheumatologist about the symptoms. Thank you.
I'm glad I was diagnosed w/EBV, which I think has a lot to do with my 3 diagnosed autoimmune diseases. I felt like I could point to something and not be labeled a malingerer.
Now whenever someone asks me about it, I can point them to this video. 😊 I can identify with many on this list. The emotional "flattening" is interesting to experience. The "flattening" in my case is proportional to how "tired" I am. Edit: the benefit of this video is I don't have to struggle to remember all the symptoms. Thanks Dan 😊.
Great to hear - keep doing what you're doing and go until you are fully well. Would love to share your story with an interview if you are interested. :)
@@CFSUnravelled1 I can share my story but I'm a too shy of a person for an interview. Also, the stuff I explored & found relief from is not exactly popular. Involves use of illegal substances.
Once you are fully well, contact me via the site so we can discuss by email. Interview can be done without video, just using your first name or using a pseudonym.:) Here is the link: cfsunravelled.com/contact/
@@CFSUnravelled1 I am actually getting cured from this after nearly a decade of suffering. I'm lucky enough to be living near stanford unversity where research on CFS is taking place. I personally know some of the top researhers there. Anyway, I'm aiming to get fully well by March 2020 which is my my daughter turns 18. She does not remember seeing me well ever. Would be glad to get interviewed once I'm fully well. I shall contact you. Thanks!
I think I may have had this for most of my life without realising it, my daughter has fibromyalgia anyway and lately in the last year my son is showing some of these symptoms too. But of course I will get us both checked out with the doctor first . but thanks for sharing this information. 👍
I have been battling CFS since 2009. I am unemployed and on SSI now. My family thinks I am "faking" it and have turned their backs on me. If it wasn't for my daughter supporting me I would be living in my car. It f*cking sucks and I did all the tests and specialist only to be told I was depressed. I also have type 1 diabetes and multiple complications from that and hypothyroidism. Now I stay home alone all day and have quiet hobbies like drawing and watching Utube. It never gets better, you just learn how to deal with it more and incorporate the limitations into your life. But we are the strong ones because you know other people could not endure our struggle! Power B*tches!!!!! 🥰👍🏼🙏👊🏻
I have suffered with these illnesses for over 35 years. I was first diagnosed in 1994 with what was then known as Chronic Fatigue Immune Dysfunction Syndrome Syndrome (CFS ((
I currently am having Severe relapse. I can barely touch my scalp even the slightest touch is like every nerve ending is on fire. Is this normal for Fibromyalgia? Also my ME/CFS is the worst its been in quite a while 😭💔. Its all I can do to get to grocery store about 5 minutes away but I am a Born Again Christian and I know that GOD'S GOT THIS and HE is JEHOVAH RAPHA Our HEALER and the GREAT PHYSICIAN!! GOD BLESS YOU!! Have A BLESSED Week!! THE JOY of the LORD is Our STRENGTH 🙏💜🙏💜
I have been diagnose with CFS 30 yrs ago it has literally stolen my life.I'm mostly housebound.Now being blind from one eye I'm finding it difficult to see from the 'good' eye and am afraid I'll go blind,Had no idea that it can be a symptom of cfs which causes eye pain and getting blurred vision,...tks for the video clip!
Doctors don't believe I can pinpoint the onset of some of my symptoms - the exact moment in my life. Insomnia, loss of libido and when my energy left me like a balloon being pricked by a pin - like a broken winded racehorse, in the middle of a mountain biking event, at full exertion up a steep hill. I barely managed to finish, previously always coming in around the middle of the field, being an older person in open races, and have been short of breath ever since then, excercise exhausting instead of making me fitter. My diagnosis is fibromyalgia, and I definitely got anxiety and depression from it, having led a very active lifestyle, to the highlight of my life being able to lie in bed and watch TV. My husband doesn't really understand, so I end up in tears very often, whereas I was emotionally stable all through my life. Having an invisible condition is not for sissies!
I have heard countless people tell me about such moments. People often don't get invisible illness, it's not really their fault - hard if you haven't experienced it yourself! However, the key thing to realise is that whilst there is no cure, people do make recoveries even after many years of illness. Rarely are these accidental - the key is understanding how they do this. Have you watched many recovery interviews? ua-cam.com/play/PLYGv2houTixnrfxc1uvVbfbcTWhSNz4vq.html&si=EnSIkaIECMiOmarE
I hate my chronic fatigue. It's definitely not normal I have no excuse for it. I'm not lazy by nature and I feel guilty as hell because of it. Its not normal to be so damn tired. Now if I were working becides keeping my housework then it would be different I would then have a good excuse for the exaustion but I don't. I'm miserable because of the exaustion
Yep, in a world where we are shown and compared to productive people who achieve so many things, of course it's going to be depressing being forced to watch it go by from a bed. Your story sounds just like mine
I gave up, that was a mistake. Never give up! Listen to the ME/CFS recovery stories - cfsunravelled.com/me-cfs-recovery-stories-patient-me-cfs-stories-with-a-difference/
I have had cfs for 7 years. Took away my life. Was once employee of the month before this. I also have sever rapid cycle bi polar, borderline personality bpd, adhd, anxiety and panic disorder, sever obstructive and central sleep apnea, hypersomnia and insomnia. I am also in recovery for heroin, meth, and xanax addiction. Life has been hellish.
Thank you for this, I have almost all of these symptoms from both lists as well as paralysis of the limbs and brain that comes on with crashes. So I think severe weakness or paralysis is missing from the list unless it's just me...
Hi my mom is having this heaviness and stiffness in her chest she does not feel any pain she cannot sleep although she wants to bit comes with constipation along with her finger getting thin can anyone please tell me what this is
Yes, I am so tired all the time and up suffering from IBS symptoms. I just got up from a 4 hour nap and still exhausted with cramping. Today was such a struggle to stay awake. I would have occasional sharp pain in my shoulders and wonder what the hell is happening. Is it going to be a stroke? No. I can't pin point it out. I used to joke to my coworkers saying I have it CFS because I was tired everyday, but now i really dont think this is a joke anymore. Its getting serious.
This is totally me! I keep going back with new symptoms and by the time I go to get the test sometimes it’s not as bad. 😜😢 For example I had a muscle test (EMG) but when I went my symptoms were not really present. But before I had really bad pain and muscle fatigue to where I couldn’t walk sometimes. Didn’t knew what I had was M.E. Hopefully now my doctor can verify it.
I am no doctor, but have ME/CFS. Since I take Low Dose Naltrexone (LDN) I have deep, refresshing sleep. This is the first time I sleep well sine diagnosis 3 years ago.
40 yrs for me..gave give the exact date too!. I am going to show this video to my dr!! I AM NOT MAKING IT UP- has been said so many times that I've stopped going to the doctor now..I gave up!!
I suffered from CFS for a long time too I found a paleo type diet was helpful but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
It is very similar to fibro . I wonder why they separate it. I know you want to say fibro is more pain and this is more fatigue. But fibro has extreme fatigue too
Yall dont give up,i changed my diet!Minimize my gluten intake eat more vegetables, more fruit!It's hard i overstand the doctor look at me like im crazy when told them what was going on with me not having no energy at all
I have had ME/CFS for over twenty five years. I never go to see my doctor and haven’t for years. Getting an appointment is well nigh impossible and reporting to them and dealing with their attitude too exhausting. I manage with homeopathy when needed, reflexology, physiotherapy and daily cold water treatment. I am seventy this year and accept that if anything over and above the ME/CFS happens so be it. My ME includes JHS, POTS, labyrinthitis, PEM, IBS, brain fog and hypersensitivity to sound etc. Even I get bored with the symptoms and now treat them as ‘normal’ me and work around them or with them. The most debilitating and frustrating symptom is probably the POTS as it comes on suddenly with no warning. I can’t stand still for even a second but have to keep moving to stop it happening. This has been the case since I was a child and pre dates my glandular fever and JHS diagnosis, and well before my ME/fibromyalgia diagnosis. However since starting cold water and other therapy a few years ago my attitude has changed and I am much more willing to embrace symptoms and push my boundaries without fear. This is improving my quality of life even when I get a symptom crash. Understanding and eliminating my fear of symptoms is the best thing I have ever done to aid my quality of life.
Thank you..I am at the end of my rope..and as the list was scrollin away..I was absolutely stunned...this is real...what I am going through is real..I just posted a video on my channel talking about this..and now I have a medical term for it...
So sad that we are made to feel like it's all in our head when it's clearly a real physical illness. Speak to your doctor about ruling out any other illness before getting a diagnosis.
@@CFSUnravelled1 I am trying to recover from RA.but the emotional drop was my biggest red flag...Thank you for your reply..I shall speak to my doctor..
My Thanks... Excellent to the point on symptoms and what can happen when these symptoms are misdiagnosed as a more serious illness, mistakenly and treated as such.. Yes, very frightening, this syndrome is not to be taken lightly as you experience them either chronically or fleeting. After 35 yrs. most or all of these symptoms I have had to deal with in one aspect or another. My only advice, Big Pharma is not the route you want to take. Holistic, TCM, any Alternative for long term. Learn your body, observe, research, "Faith"..May you all be blessed on this journey you are about to encounter, yes it is a "bitch". Good Luck.. My thanks again for this video..
I was misdiagnosed with lupus (they might decide at some point, it is in fact, lupus after all *eye roll*! I also threw an unprovoked blood clot in my femoral artery and hemorrhaged, all the symptoms I have are also found in lupus. Turns out, I have CFS! Imagine the dire consequences if I was put on meds?!!!
This is so good. I lost my job a week ago. They said they would work with me, but as you know because they can't see it they stop believing you. Been 6 years and now I don't know what I'm going to do. I can't get another job but I don't have doctors that even know what PEM is or believe that it's real.
The lack of understanding is frustrating and unhelpful which is why advocacy is so important. Perhaps this videos helps? ua-cam.com/video/esml2z8gKFc/v-deo.html
There are some really good people at the clinic - I don't think you'll have that issue of the doctors there not believing you or not understanding PEM. They understand there is no magic cure, but hopefully the doctors will believe that recovery is possible and help you to start building your strategies and give you appropriate support.
Bradley, i feel so bad for you!! I know exactly how you feel! Had this for more years then i can count! Ive tried mega doses of b-12! The doctors are baffled cant find anything wrong! They think its in my head! Dear God if they only knew!! 🙏🙏🙏🙏🙏
I have several auto immune diseases. Ankylosing Spondylitis and Psoriatic Arthritis and my major diseases. Sjogren's syndrome, Raynaud's phenomenon, and of course psoriasis. My rheumatologist has written in my records probable lupus but because there's too many overlapping symptoms they can't say for sure but every time he does the appropriate blood work it always comes back positive. I don't know what kind of blood work they do for a lupus so I don't know if there is a "lupus" test, but he tells me there's 3 blood markers that tests positive.
I got sick 9 weeks ago and have been suffering from disturbed sleep and some of these symptoms. It looks like right now I have Post Viral Fatigue but I'm terrified that it will lead into CFS. My energy is somewhat improving slowly, i.e. I can exercise, walk, and go for bike rides but if I do too much I will feel more tired the next 1-2 days. For example when I exercise my throat may get slightly sore, and I may get a slight running nose. My sleeping has been terrible, always waking up and trouble falling/staying asleep.
There are many doctors who understand this illness and focus on a multi-lateral approach for recovery including orthomolecular and lifestyle medicine. You may need to look further afield, but focus on what YOU can do to help yourself first and foremost!
One of the most profound and distressing symptoms = extremely severe sensory sensitivity and overloading...feels like being tortured by my own senses - the quietest sounds is unbearable, the curtains closed, sunglasses on and eyes closed and still too bright, severe orthostatic intolerance so cannot even use a pillow, heart palpitations even when I think or move my little finger, intolerant to most foods, difficulty speaking, breathing, choking on my own saliva.
I have this. It's horrible!! I've lost jobs in the past because I'm too sleepy to keep up with my work. I have many of the symptoms and take far more meds than I care to. The newest thing, rapid hair loss. I'm devastated. I try to never leave the house. Always wear a ballcap now. I never thought I could feel worse about myself than I have in the last 4 months when it really started coming out. Drs don't know what to do anymore. Between scripts (10) and vitamins (5) I take 11 pills each morning and 9 at night. It's just become too much to deal with most days. I have found that 2 5hr energy shots a day keeps me up for a little while at least.
when more symptoms are in the “you’ve had chronically” category than the “you haven’t had” category since you were 7-8y/o:👁👄👁 when you’ve been wondering “wtf is wrong with my body” since you first were a sick kid for a couple of years and celebrate every answer including learning the names to your symptoms: 🤩🎉❤️🧡💛💚💙💜
I’ve read that there is now a distinction between ME and CFS. I was diagnosed at the Mayo Clinic with CFS and FM. I wasn’t satisfied with those diagnoses, and was certain something else was going on. So I saw a geneticist at Vanderbilt who refuted the FM diagnosis, confirmed the CFS diagnosis, and diagnosed me with Ehlers Danlos Syndrome. My health has rapidly declined over the past 8 years. I’m miserable.
I am sorry to hear that. It's important to make sure that diagnosis are corrected, so getting a second opinion is always important - that of course includes for the diagnosis of Ehlers Danlos Syndrome. As you can see on this channel, I share lots of stories of people that recover from ME/CFS/Fibromyalgia/POTS. I am uncertain if ME/CFS/FMS is comorbid with EDS or a separate diagnosis - hope to share a ME/CFS/FMS recovery story from someone with EDS if that is possible :) In the mean time, remember that there is always something you can do to make yourself feel better, if not physically, then mentally and emotionally - always be kind to yourself. xx
CFS Unravelled - Thank you so much for the reply. I wasn’t expecting that. My health declined rapidly after having an epidural injection in my spine for a herniated disk. This caused my adrenal glands to fail. I was misdiagnosed with Addison’s disease. After two years on daily oral steroids, I was able to very slowly ween off of them. But I’m not sure my adrenals have fully recovered. This episode prompted my journey to find a diagnosis for all my strange symptoms and pain that I had been living with for years. Everything worsened when my adrenals failed. I did see a second geneticist in my hometown to confirm or deny the EDS dx. At Vanderbilt, I first saw a genetic counselor who interviewed me, then the doctor examined me. The interview was long and comprehensive. I did not see a genetic counselor at the second opinion appointment, but my physical exam was much more comprehensive than the first. The second geneticist confirmed the EDS dx. She even called a medical student into the exam room to show him my “textbook” features, and lesser known features that they often don’t mention. I was diagnosed as having the hypermobile type, but my symptoms overlap the other types, which is common. I was tested for vascular EDS. I do not have the mutation associated with the vascular type, but I do have a different mutation on that same gene. It’s significance is unknown, but thought to be benign. I’m not so sure. I don’t know if CFS itself is actually a comorbidity of EDS, but I do know that many EDS patients struggle with chronic fatigue and post-exertional malaise and pain. POTS and other forms of autonomic dysfunction are considered comorbidities. Long before my EDS diagnosis, I was diagnosed with orthostatic hypotension and inappropriate sinus tachycardia separately, along with episodes of SVT, but I can’t get my cardiologist to test or diagnose me with POTS specifically. He said a tilt table test is unnecessary. I live in the U.S., and have obviously travelled to different cities to find a diagnosis for my declining health. I live in a big city with a respected teaching hospital, yet I can not find a local doctor who treats EDS specifically. None of my current doctors know much about it, and don’t care to learn. So if I have any comorbid conditions, such as a mast cell disorder, they don’t know enough to look for them. They all still consider EDS to be a rare condition, when in actuality, it is merely not often recognized and therefore, under-diagnosed. Before I became ill, I was a successful software developer and super mom. Two years after my diagnosis of EDS, my husband left and I lost my health insurance. He did not want to be stuck with someone who is ill. (Fortunately, by this time, my son was away at college. He does NOT have EDS.) Now I also suffer with major depressive disorder and anxiety. I have a very long list of symptoms, but the two that are the most debilitating are the pain and fatigue. I am under the care of a pain management clinic, but they put me in the same “box” as everyone else, even though I am unlike their other patients and have needs that should be addressed differently. I feel like if I could just get the fatigue and extreme post-exertional fatigue and malaise under control, my quality of life would improve drastically. My hope and efforts wax and wane, but I have not given up completely. I’m too young to accept this as how I will live for the rest of my life. If I find a solution and am able to recover, I will certainly share my story with you.
You need to apply for SSDI - and don't be dismayed if your claim is rejected. Well over 75% are - what you have to do is appeal. Get an attorney who's experienced in disability insurance; she/he works for a percentage which is set by law (It isn't a lot) which also means that if you are denied you don't pay anything. But when you get your SSDI, you'll automatically get medicare, so you will have medical coverage, which is vital for everyone but especially for people with current medical conditions. I wish you well.
I feel like crying. It seems as if this a light into an ongoing problem. How do I get my doctor to listen? She says I will need to come in when this is going on but how do I do that when I am too exhausted to get out of bed? When it is going on I don't need to sleep I HAVE to sleep sleep sleep until the worst of it passes.
Had been in a car accident,( I took the brunt of it!) A year later, my life as I knew it, had ended, I’ve had a three year nightmare! Trigger fingers, low back spasms, nerve pain shooting all over, rib pain and tenderness, hip bursitis, vertigo, osteoporosis....I was a performer ( singer) and LOVED the simple things in life, now, I can’t even sleep( always in pain)😞
I have had trigger finger in three different fingers Never Associated it with the M.E. I was offered a steroid shot or surgery. I had it really bad in my thumb and then the middle fingers on each hand. I didn't want to get the steroid shot I was too sick to make it back to the doctor so I just put a splint on my finger and kept it mobile and they completely healed. It took a good month but it worked. I wasn't expecting a cure oh, I just splinted it because it was excruciating. I hope this helps a bit.
Thank you for this video. I have had this diagnoses over 30yrs and gastro intestinal disorders after gallbladder removal 2 yrs ago. It's been a rough ride, bit I raised 3 wonderful children and worked and continue to work fulltime. I try to ignore some of the symptoms and carry on, but my current doctor looks at me like I'm crazy or faking. He does little to nothing for me but reorder medications I've been on from my previous doctor who moved 2 years ago. I know I need to see someone else.
Sir I have all these ..suffering fibro since so many years. The fatigue i started getting since last 1 year. Luckily no irritable bowels syndrome, pains many types, sprains, stiffness, numbness.. going on. Fatigue is horrible. No one feel or believe as i look healthy to my elders. Its most painful , no one feels or believe when i am suffering so much..i am unable to take any medicine ..all give me very dangerous reactions. So please keep going with this disease which help ppl control or cure this condition sir.
I was diagnosed with fibromyalgia 3 years ago after suffering symptoms for 30 years . At my worst I struggled to walk , couldnt think properly basically had every symptom on that list .My doctor basically said there was nothing he could do besides try low dose chemo which didn't sound that appealing. I had been taking prednisolone which helped alot but isn't a long term solution . I was on the brink of "checking out" when i stumbled across this channel and that of dr Ken Berry . Ive been eating mostly a carnivore diet for over two years now and feel better than i did when i was 18 . Im now almost 50 . Carbohydrates fruit and sugar are off limits for me . Each time i try to reintroduce them my symptoms come back . Dont give up . There is always hope .
Sorry to hear that - I get how tough it is sometimes. Tomorrow is another day, hopefully you feel a little better soon. When you do, grab this free e-book I wrote some time ago - cfsunravelled.com/discoverhope/
There is no single magic fix all cure - however, people make full recoveries from this illness in all manner of ways. Check out the recovery interviews on the channel! ua-cam.com/play/PLYGv2houTixnrfxc1uvVbfbcTWhSNz4vq.html
I've found that onions make my symptoms worse. Trying to cut out onions and foods containing or flavoured with onions. Garlic and leeks are also in the onion family. Try it for a week and see if it helps!
CFS since 1998 - am responding/improving to the Wheldon protocol for a cpn infection as the cause. The first 8 months of treatment were brutal - worsening overall. I suspect most that are infected interpret worsening of symptoms on antibiotics - as not working and quit antibiotics.
I think I am suffering with this, ever since I first had covid. When I have what I call a attack I feel so ill and exhausted I wish I could just die. Then I sleep & it can take me up to a hour to come around when I wake up. I have been put on beta blockers for my heart , I have trouble breathing sort of breath, I go clammy and sweat just walking, dizzy & feel sick also blurred and tunnel like vision. Short temper, I forget things at times along with poor concentration levels the list goes on.
I have been suffering with this, fibro, and I believe possibly EDS as I’ve started dislocating, since my late teens. I’m 55 now. I really wish I could find some help. But I’m tired of the run around. Every time I leave a doctors office I feel worse about my situation. It’s really not worth it.
There is also a connection btwn Me/Cfs and connective tissue disorders like Ehlers Danlos Syndrome. There has to be a reason why it is more prevalent in our community. I hypothesize that maybe the MTHFR gene is to blame for deregulation of our body systems. We then can't shake infections any stress we incur and our autonomic nervous system is in hyperdrive keeping us in fight or flight. I am my own md now and the only thing that has helped me is adaptogens and trying to detoxify my body. I pace my activities and if I have symptoms after activities of a crash I proceed by cutting what I did in half called finding your energy envelope. Those who have recovered and are on you tube are the best advice givers. Listen to your body and quit ignoring it's signals of when to rest.
Hi Lory - thanks for your thoughtful comment. Yes I agree, there is a reason, it's not co-incidental. I haven't explored this in enough detail to make a meaningful comment, except to say that I don't believe it would be the MTHFR gene. I haven't connected much with the ED community, but it would be great to share a ME/CFS recovery story of someone diagnosed with ED one day.
I also have hEDS (waiting for the test results for other EDS forms.) I am also compound heterozygous MTHFR. I've also been struck by lightning and had a terrible case of Valley Fever. I'm sure this all ties together with my CFS and Fibromyalgia.
What is your most frustrating CFS symptom besides fatigue?
Head pain feeling like head is in a vice
Rashes, skin feel like it's getting burned by a blow torch then being rubbed with sandpaper, and the spine pain along with the shoulder blade muscle cramps, the I C , moody from not sleeping and not being able to clean my home and do gardening, cooking and eating, the list is long .
optic nerve cramps as sucks your eyeball into your head and theres no way to ease it , chrondilitis (rib muscule swelling and ripping or bad cramps, you can drop a dress size so not all bad lol) and when your chest lining swells up coz it feels like your lungs are encased in wet sponge, All of these are difficult to elivate .
I also wanted to ask your thoughts with M.E/ C.F.S and scarring on the brain stem as the humminbird insitute has found that all suffers have this .
For context i got this at 10 years old after a very high fever , i was given a diagnoisis at 20 and im a 45yr old female .
Leg weakness and inability to move anywhere. Pain and weakness
If I try and do walking the day before I’m couch bound. No good sleep wake 3 am
22 years for me, it’s a life killer. I’m nearing the end of what I’m willing to tolerate and fight for. There is no end of the suffering that I can see anymore.
Did they ever test you for a spinal fluid leak? The major symptoms are uncannily similar.
Its especially brutal if you dont have anyone looking out for you, which is why capitalism sucks so bad, the millions that must suffer with this with no hope, stay strong, find a life worth living
13yrs for me, bedbound since 2016 with Fibromyalgia & weird (extreme)neck spasm that I believe is Dystonia, it’s difficult to breath & speak in my normal pace, my short & long term memory is extremely bad & I have the MS hug symptom (I suspect MS) now & issues with the gut IBS, horseshoe kidney that has caused 4 kidney stones
, I also have asthma (which is ok, however breathing normal while managing extreme pain is impossible & especially the pain in the neck/back area & difficulty raising my chest up & down & pain in the upper part of my stomach(supposedly gerd, use meds that help a little with the upper stomach pain) possibly issues with thyroid etc I have so much fatigue, pain, seizures & don’t get the money or helped I’m entitled to while not getting the support I need from friends & family...
Julian, it takes lot of courage to fight it so long, so salute you! I am taking lot of positive energy from you. Please consider LDN if your doctor can prescribe you. In India we do not have such possibility, you can try as I have seen in many forums. Hope you will get well soon, from bottom of my heart! All the very best.
I suffered from it for a long time too but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
Have been through this pretty much all of my life probably from age 12 and now I'm 61. It's like you often almost get punished by confusing, debilitating or randomly changing, scary, repetitive symptoms anytime you try to think or do something.
I just pray people begin to understand it and not punish their loved ones. it's hard enough to survive at all with this, to afford survival, to live in poverty & destroyed potential - moreso to hold the high dream of somehow miraculously managing to afford help to grasp at some relative wellness. To live with this when people don't understand is crushing.
Not trying to break anyone's heart here. We who suffer are already broken, but working to stay positive, alive. I just want anyone close to a person with this to know, understand & to be able to get it.
Hey, you can recover from cfs. I recovered after only about a year. I would look on UA-cam about recovery and try to implement some of the stuff there. Best of luck!
@@PeachBoiASMRIf you truly knew how it feels and therefore actually is, you’d provide at least a few of the sources that you say helped you.
Very well put. I'm 62 started when I was 26.
Doctors say everything is depression or anxiety! Mine did but now we are unearthing more positive test results and labs. I thought being COMPLETELY honest to people about my struggles would help. Nope. STILL after a while having to prove yourself gets too irritating. People look at you like your either crazy or your faking it!😢
So true - not fair is it!
Yes! Im SO sick and tired of having to explain and try to prove my daily hell, especially aince the end result is still being judged and not understood, and accused of being hypochondriac. If they would live for only one week in our body, so they can get it once and for all.
After 10 years and numerous surgeries I developed fibromyalgia/ CFS the lack of understanding by those you expect to support you is one of the most heart wrenching parts of the entire situation
Isolation, and depression are definitely a by product from lack of support besides our innate response to always fight to get better
I have done this whole psychological acceptance In order to not to feel so defeated
Fibro warriors are the strongest people on earth!
You're right, it's exhausting! And then when they finally believe you they get sick of you having an illness/hearing about it.
It is utterly exhausting on a daily basis to either hide it all away & find the energy to fake it in front of others, or to feel pressured to explain why you are sick one day & not the next.
It’s amazing to be validated! I think the best way to describe the fatigue to ppl who don’t have it is to imagine working a grueling 10 hr day of hard labor. You go to bed and knock out and then have to get up and go pee in the middle of the night. But imagine instead you’ve slept 14 hrs and you still feel that way. You just want to go back to bed but you have life to do. Every free moment is spent sleeping. You’re kid goes on vacation with your sisters family for three days and you imagine what you can do with 3 days of freedoms from a 3 yr old. But instead you decide to take a nap. Then you wake up 3 days later when she’s brought home, just as tired. You haven’t eaten. You’ve done nothing but sleep, drink some water and go to the bathroom. It feels like you slept 20mins. That was me at my worst. A new single mom still breastfeeding and you wake up one day but don’t really wake up. And it never goes away. I’m better then I was from changing my diet but it’s still not good enough bc all the joy gets sucked out your life bc your always exhausted. I try and stay positive bc at least I don’t fall asleep on my feet anymore. But I still feel worn down by this illness and the lack of knowledge of the drs I go to. I actually got better the most on my own after giving up on Drs when they kept asking if I thought about seeing a therapist. Also the closest I ever came to punching a dr.
Hey, I just read your comment. I hope you're 9kay and doing much better!
As Dr. Majid Ali said, a disease does not exist until there is a drug for it.
One day there will be a drug for it and suddenly MDs will enthusiastically say CFS exists.
Have you tried a rheumatologist?
👌👏👏👏👏👏 ✨ 👉 Totally agree w/your comments & experience... Then add Chronic Lymes, Lupus, CIRS, ME, Fibromyalgia, Spinal Fluid Leak, Cervical Spine Damage & Instability, serious Spinal Stenosis & Spondylosis, Vascular Ehlers-Danlos {extremely fragile Veins & rigid Nerves} Articular Sclerosis,, POTS, Deep Vein Thrombosis, re-occurring large Tumors, horrible Autonomic Storms, Tinnitus, Neurological Sleep Apnea, Enlarged Congestive Heart & Mitral Valve Prolapse & injuries from being assaulted & ignored by 6 Drs for over 6 mos~!!¿!! Add to to this: Environmental toxicity that has pervaded our homes, lungs/health & community for decades from a 100 yr old known issue from an over expanded, immorally mismanaged metal foundry & other decades of 100's & 1,000's of Tom's of cumulative highly TOXIC heavy metal concentration of plating & aluminum processing plants that have been habitually & nefariously catered to w/public tax $'s, tax abatements & hefty utilities discounts that are not 9fderd to those of us who are struggling from the highly toxic affects of these highly profitable & immorally-run corp,{ses}, their CEO's & CFO's & legal eagles {look-up what the word 'legal' & compare it to the definition of 'lawful' & you will have an 'awakening' to what those who 'created' this system have in mind & WHY we are both so physically sick & disabled & dying earlier & from more 'unexplained' & not-so-'myserious' deaths & are then financially devastated seriously 'under regulated' by EPA / IDEM & our local health depts & 'corp.{se}' medical Dr.s ~> ALL 'corp/big pharma-influenced & restricted 'practices' & operating under immoral, unethical, careless & often highly questionable, dangerous, haphazard, radical &/or unproven protocols becoming known for their "LACK" of empathy, human compassion, moral ethics or conscience, integrity & accountability~{w/very few 'rare' exceptions'!} They seem 'void' of any human emotion or traits & lack the very essence of what we seek medical help for~& are less & less interested in listening, consider what is being expressed & suffered & take their very ill patients seriously...& "DO NO HARM"...NO interest in doing thorough physical examines for seriously ill patients, or even listening to your lungs & heart w/an enlarged congestive heart & mitral valve prolapse or any of the other afflictions that have increased & multiplied making life so difficult to navigate from day-to-day...
No interest in seeing chronically I'll & disabled patients more than 3 or 4 times & 'farming' them out to 5 or 6 other 'so-called' specialists ~ that most of which are so egotistical & narrow-minded & not interested in sharing findings or assumptions & the info & results they obtain...just getting copies of MRI's & access to things like 'my chart' is a joke & getting more & more difficult & when you do ~ you often find that the Dr. either wasn't telling you the whole truth or mis-read/mis-interpreted the results which they will argue & project other unfounded behaviors & negative attitudes onto you ~ if you point this out & expect them to correct their serious oversights, carelessness & yes 👉 "mistakes"...they make them far more than they used to 30-40 yrs ago & our quality of healthcare is 👉 NOT improving~!!!
Moreover it is disintegrating, OVER-PRICED, OVER-RATED, RADICAL, UNAFFORDABLE & INEFFECTIVE 👉often causing "MORE" serious issues than you initially had...& "MOST" of what is making us sick ~👉 is making corrupt corp.{ses} & their Dr.s & the CEO's & executives of those operating under corrupt monopolizing 'corp.{se} status's...
They are not patriots or upstanding I'm individuals...can't & won't even 'look you in the eyes when you have an appt...too busy looking at their computer screens entering derogatory & unfounded info to corrupt your medical care & records & 'protect themselves' w/false & careless documentation should you call them out & want REAL, SAFE & EFFECTIVE, AFFORDABLE HEALTHCARE or "have educated yourself far more than what the Dr. is willing to 'acknowledge' & note ~ which these days...isn't much ~ from my 50+ yr experience~!! ...& Getting worse~!!
No concern/'NO fault'/No conscience or empathy attitude seems to be the 'REAL epidemic' in our govt., educational & medical systems, EPA, FDA, Medicare, HHR, CDC, NIHAIDS & others...not protecting 'us' & don't care & not properly following-up on a 'timely or efficient basis' & we are as a result ~ then ~ subject to an ineffective/insane/inhumane & non-functional 'system' also sorely 'under-regulated' & not 'reigning-in' / calling-out & holding accountable these CRIMINALS & CRIMES AGAINST HUMANITY...
We are slowly waking-up to the TRUTH of what is really making us sick & what's more: Our Dr.s are facilitating & fostering it~!!! {But, for a rare few 'gems' like this fellow & there are many using social media & the internet to get the Truth out & reach more people than they would in their general field of medical 'practice'... {A 'key' word...why be 'practiced & experimented-on' when their are "Medical/Patients' RIGHTS" & much 👉 BETTER / SAFE / PROVEN & EFFECTIVE NATURAL PROTOCOLS & THERAPIES that most corp.{se} hospitals & medical practices REFUSE to ACKNOWLEDGE ~👉 or HONOR ~👉 or RESPECT their PATIENT's WISHES, REQUESTS & RIGHTS ~👉 contributing to more needless SUFFERING ~👉 & you really have to ask yourself "WHY"~???
We "KNOW"...just been in denial & deprived of quality medical/healthcare for so long...it has become a sad reality & way of life...
My question is: WHY are WE paying for ALL of this gross medical negligence & WHY aren't those responsible for making a 'KILLING' off of making us so SICK & DISABLED~???
Shouldn't the culprits & those content & catered to in these undeniably 'corrupted & broken' systems be held 👉 "ACCOUNTABLE" for the pain, suffering & lack of moral ethics & integrity be the ones FOOTING the BILL~ & forced to clean-up their act &/or be prosecuted for their obvious CRIMES AGAINST HUMANITY~!!
WE NEED TO ELIMINATE this systems & procure & create a NEW & BETTER ONE~!!! AMEN ✨🕊️🙏-ing for better days, better health care & PEACE of Mind, DIVINE INTERVENTION & JUSTICE for us "ALL" ~!!! 🕊️✨💜✨⚖️✨🎆 🙏 😉
☝️...More A.I. glitches☝️in 'typos'☝️ appearing in comments... {Surprised it even allowed to post~!¡!} As there were 👉 "NO TYPOS or ERRORS" in my "ORIGINAL" composition & POST 👉 until I 'posted' it...¿?¿
Don't you long for the days when you could 'count-on your own abilities' to type 'accurately' & spell-check 'actually worked'~??? ...& You 'knew' once you 'proof-read & edited' your text or email info...it would be sent & / or posted as it was "originally" typed & submitted~???
Those of us, who are very 🤢 ill, disabled &/or the most sensitive & outspoken & trying to SPEAK the TRUTH & share our experiences & medical / healthcare nightmares & demand JUSTICE are the 🤐ne's being 🎯 'targeted'~😲¡!¡ ✨😉✨⚖️✨🕊️✨🎆 ...but, a day of reckoning is JUSTICE IS COMING~!! I trust & 🙏 pray we live to see & experience this ~ in ALL it's GL🎆RY~!! Amen~✨🕊️✨💜✨⚖️✨🎆
I am 66, I have been experiencing most of these symptoms after contracting Mono or a form of Hep after working one summer in 2 different restuarants when I was 19 years old. Had a few Dr.s blow me off, tell me to exercise more, or take a vitiman supplement. Contracted Covid twice during 2020 and ever since that time, I feel as though I 've aged 20 years. My world has turned upside down due to this illness CFS/ME and personal stress. As you stated in this video, people get tired or hearing about what you're feeling and write you off as a hypochondriac. It gets worse everyday, and I have reclused myself bascially from the world. Seeing a new Dr in a few weeks, and will have to go through the entire process of explaining my symptoms again, and really feel like, " what's the point ", they won't believe me anyway. I was diagnosed with Hypothyroidism since the age of 35. Was doing well for several years until divorce stress, raising a child without financial or emotional support from his father, and of course Covid in 2020. This is the most detailed video I've seen, and reinforces to me that I am not lossing my mind or crazy. Thank you for your work.
I am 66 as well & have Hashimotos Thyroiditis for 35 years and since Covid I have not been well
I have become a recluse as well-totally changed my personality and life the past 8 months-I believe that I am in adrenal fatigue 😩
Look up, The Perrin Technique. I have the same thing, & it’s severe. I want to try Dr Perrin’s technique. There’s sound studies backing up his original discovery regarding our lymph vessels. Look on UA-cam 🫶
Great video, 4 years ago I got CFS. Changed my world. Yet the people around me still don’t want to understand. Make me feel worse about my self every day. Praying I get better soon. I feel like a zombie.
I'm so sorry Rosey I've had for 27yrs. And still people do not get it it's hard enough to go through this horrific illness... without no one but others like us will ever get it hang in maybe they will get a cure for you soon 💙🙏
My favorite line is you are just a lazy bum. Gimme me a break
What I've noticed is that the doctors automatically say your depressed well heck yes I am and it's because I'm so exhausted. Situational depression. Depression medicine is not going to help at all. Why? Because it's situational depression unless my situation changes depression medicine is not going to help! Wish that doctors would understand that!
I think for a lack of options
I've found Skme folks suggesting Gaba and it seems to fit the bill
Me too! I went on anti-depressants for three months - They just made me numb mentally and unable to express emotion. The thoughts and patterns were still there. It was a very confusing feeling.
Yup the knee jerk you are delusional because you are depressed, here have some antidepressants gets old. The gaslighting 💀
😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭 This is my life. My soul is so sad. God have mercy on me and anyone who is affected by these horrible symptoms. 14 years of this and getting worse. Thank you sir for this video.
I am in the same shape, I am 57 now .Had this since I was 12 years old. It hurts when people , neighbors call me the weird person. No one understands. I often want to just give up. God bless you,
You are not alone. Many of us are going through the same thing.
I’ve been on this CFS roller coaster since summer of 1990. Came down with “the flu from hell”. Severest symptoms aren’t as bad, but I’m no where near living what most would consider a normal life.
Symptom treatment is all the medical treatment one can hope for from the medical community. It helps but there’s no “magic pill”.
It can wear you down. Support groups can help. Back in 1990, I felt like I must’ve been the first person to ever have contracted it. But suddenly, I found I wasn’t alone when watching a town hall meeting on local television. People like me were there. Telling “our story”. The relief of hearing others stories made me feel so much less alone in this.
Thank God the stigma has lifted a lot since then, but there’s a long way to go, too.
How r u today did u had panic attacks those days
How havent u recovered in these 35yrs?
Me, too since 1991, after being hospitalized for meningitis in October 1990 (after getting tetanus/meningitis shot in order to receive stitches for my cut finger)…… the psychosomatic/ depression position from doctors cause victims to continue to do more than they should or can. Gaslighting. All a diabolical test run by people like fauci….
The injections spread the infections…. Then the databases help the mad scientists see how their evil games are working…
It's absolutely hell. I've had it since 1999 ,it just destroys your will to live.
Wish I could show this to everyone that keeps saying they think they're fatigued. No, youre just tired, you have NO IDEA unless you actually have it.
Totally, advocacy is still important. Perhaps THIS is the video to show people???? ua-cam.com/video/esml2z8gKFc/v-deo.html
True..its so difficult to explain..even to your own self..I am actually feeling too tired to type this lol...Trying hard to get back on track
My body is aching, fatigued and joints are aching, but I think I got the flu or anemia
One day 25 years ago it was like i had an on/off switch and someone turned me off and the symptoms hit me like a steam train, i have lived my life as long in illness as i have in health and doctors have been useless.
Well put regarding "on/off switch" but aint that like many diseases such as cancer. One minute were fine and the next we aren't. My doctor prescribed cyclobenzapr for night and then we are going to try Savella for day time. Hope you can get help with your symptoms!
Something hurt you very much twenty five years ago and you stuffed it.?
Did some one betray you ? Is it bitterness ?
Hate, unforgiveness ? Are you withdrawn, alone in most of your life? Are you suspicious ?? about others and then scorn them with your opinion..? Do you talk to yourself sometimes in public and then feel crazy? Do you think your ugly and your body needs fitness...? Do you keep company with negative, opinionated, know it all accusing people ? Who are sick because of the secrets they keep...? Are you using anythig that alters the mind ? Side effects of Rx too..Are you Stuck !
You might be carring a burden..hanging around sad sacks or just unforgiveness and bitterness... Just tired that life is hopeless sometimes..YOU are a buman, not junk..let go of that resentment and unforgiveness ! You cant change that, you yourself have hurt others, most of us have.. All it does is poison you mind and soul and compromise s your focus !
Let it go, look around some people want to love you for free and God does too..
Take care..
Its over let it go !
Some people want to love YOU
Me too
Yep.
Dr's are useless because they are part of a system that wants people sick and buying meds.
I feel like I'm suffering from this because of covid 19. I get chills, sore throat, mild fever everyday. It's been several months. I hope for the best for anyone who's affected by this
Maybe it is, you can get it from a virus too
You are exact on your explanation. I have 95% if not all of what you said. It's so hard to keep on living. What the hell happened to me!?
I say ANS dysfunction happened to you! Have you seen the videos explaining how the symptoms get created? - ua-cam.com/play/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE.html
I used to be an elementary school teacher! It is very hard to keep going. I hear ya!
Mold exposure?
I was diagnosed with ME in 1993, this video described my conditions symptoms 100%.
Then worse thing is and has been the total lack of belief and understanding from the medical profession.
Yes, it's really adding insult to injury. The key is to connect with a physician that is better educated - never put up with attitude!
I had a doctor tell me I can’t be that bad becouse I walked in. Cause they didn’t bring me in on a stretcher. I was so taken back I said nothing and just walked out. If tbe next one does this I will chew tbem out
Thanks ever so much for this film, it makes such a difference to a huge amount of folk to be validated!
Since 2018, and I finally got the diagnoses of CFS/ME and Fibromyalgia. They’ve been testing and testing for years. Finally met a rheumatologist and neurologist that listened. Trying more to be better. I would love to even get back 50% to what I used to be.
does anyone get hot and cold chills from one min to another? without a fever. ? its unbearable ...gentle hugs yall x
Hi Tracey defo get the the cold chills cold hands and feet even in a warm day got diagnosed with cfs a year ago its been hell take care👍
Like thevideo says, best to check that it is just another cfs symptom and not some kind of sepsis or problem in the body caused by tooth \mouth infection .
I get this all the time! Chills without fever, also suddenly feeling like I'm boiling when no one else is hot at all. I had a long Covid appointment today where I was told this is caused by dysautonomia.
Yup get this
My aunt had CFS since the 80s. She passed in 2018. I wished I had found this channel for her. Thank you for these videos.
Nice video, but I it's missing some of the core symptoms, especially muscle weakness and/or muscle fatiguability. These symptoms are very important, because they help distinguish ME/CFS from "chronic fatigue".
Simas P: Is muscle weakness/fatigue a Chronique fatigue symptom or ME/CFS symptom? Thanks a lot?
Angelheart 76 It’s a Me/Cfs symptom
Yes, if I push too much I start stumbling around like a drunk and slurring my words and I don't drink. It's just from the muscle weakness and fatigue.
You're right, i suffer from muscle fatigue/weakness, im only 27 years old, he forgot to mention that one.
Anyone experience, muscle cramping and tenderness!
What about, shooting nerve pain, in the back, waist, groin, down back of leg?
If you have it...you know....i have fibromyalgia too and sleep apnea
no hypochondria for me thanks , was asking a psychologist if i were hypochondriac and she said that anyone who asks himself or herself this question definitely is not , hypochondriacs do NOT ask this question
Absolutely! But it can sure feel like it at times can't it!? We often think "how can so many things be wrong!?" That in my view is the biggest clue as to the root cause of the illness.
@@CFSUnravelled1 So, do you still believe both this and FM are caused by dysautonomia? I was thrilled to see you going that direction, since I have believed that to be the case for the entire 33 yrs. I've had them. I tend to see FM as sympathetic dominant and CFS as parasympathetic dominant, though we can have both if our ANS is dysfunctional enough. What causes the dysautonomia is then the next question.....any ideas?
Here is the link to the first of 3 videos that explains this! ua-cam.com/video/xINZnfAB5G8/v-deo.html
My life was before severe /ME and after. Ambitious , sporty , perfectionist& driven. Was famous for juggling 100 balls at same time. On top of the world . After emergency c-section With a baby ended up in wheelchair! Yes it is all in your head, you have depression etc after 3 year of different diagnosis like MS etc told me you have FM/ME. I cried atleast knew am not crazy. I know now that I burnt myself & my body out. I lost my career as pharm D. Still no one understand & gets me. Still do too much for my family . This year became 50, and DT2 as well due to reduced mobility . My cortisol has been x20 normal levels and that makes it difficult to lose belly fat. If I could live in deserted island , with no responsibilities and no one to expect too much of me, I would feel better. I am never pain free even with fentanyl patches , SSRIs etc .
I have never heard of this condition but One evening I decided to type in all my symptoms of how ill I’ve been feeling for the last six months and this showed up! Everything that was on that list I’ve dealt with and more and I pray I can find a solution and get a new doctor.. thanks for this video!!!
Hope the reocovery stories inspire you.
Have you heard of LDN?
I've been trying to find a diognosis for almost 20 years. It just gets labelled as depression and anxiety which I also battle with.
So sorry. They Won't say fibromyalgia or cfs in my case because lots of insurance companies will not cover the treatments for any of it. I've been on this jo8for 10 years and various health challenges are what started it all from a severe back injury
And you know people don't want to believe you have back problems EVER
Hi there no way this is cause my depression. You live a normal life full of energy. Then one day. You exhausted no energy to do. Things makes you ill. And depression always gets better with time.
On the same boat let me know if you ever find a doctor that really cares. I’ve been battling fatigue since childhood 😳😳😳
Something with me. I'm not depressed but exhausted all the time!
@@KarlaZel Deep meditation and frequent chanting of 'Aum' ॐ
I have suffered this over 20 years but I am now healed. I am praying every who is suffering presently. God is able trust Him...
Wow! Please share how you overcame this!
No you weren’t. Or you’d be sharing EVERYTHING you feel you did that helped cure you.
I was diagnosed by Dr. Bell in Lyndonville NY when I was 5yrs old. I believe he was the first specialist to reasearch and put a name to this syndrome! This video was very helpful. It mentions that IC and a couple other diagnosis that I have go hand and hand. I didn't realize that! Thanks you for the information!
I live in Saratoga County, New York and I am looking for doctors who can diagnose and treat chronic fatigue syndrome. My symptoms have been long-lasting and debilitating. I would really appreciate it if you could recommend some doctors in the area, including a primary care doctor. Thank you.
Oh wow, you were in Lyndonvile for the 1985 epidemic?
Dr Bell diagnosed me in 1999 when I was 38 yo.
Miss him greatly !
Wish he was still practicing!
Big hug to you! Did you get much better ?
Doctors and other medical professionals need to be educated on this condition as they simply don't understand it. Many dismiss it which is damaging. I've had comments like.. who on earth told you that and then rubbish medical professionals diagnosis of thus debilitating condition. Others tell you to just exercise, take vitamins and eat this that or the other, sharing their thoughts on what you need to do as if we haven't already tried all these things. People are clueless but there is NO awareness and very little understanding yet we are seeing more and more people suffering from this.
Thank you for making this video. As someone suffering cancer related chronic fatigue, as the treatments of chemo and radiotherapy were what started this condition off in me more than 4 years ago now. I pretty much tick most of the symptoms you mention in this video. Its good to know it is linked to this condition as I often wonder if the irritable bowel is to do with the chemo treatment, though it is a long time ago now. Thanks. Good luck everyone struggling with this condition and of course dealing with a world that either doesn't want to believe it, or if they believe it, don't want to hear about it. Stay strong in the face of it all. x
Have your thyroid checked. MAKE THEM do a Thyroid panel not just the TSH. My T3 was very low. Started on. N.P thyroid 2 grains that made All the difference. Had my cortisol levels checked also.good luck to you
A mirror image of my life for the last 3.5 years; even down to the I.B.S. You have confirmed everything about my health problems and their causes that the Haematology doctors and my GP do not want to accept. Thanks for sharing, and best wishes for an improvement in your health. - (I am now down for my first M.E. appointment, but still have to wait another 20 weeks!).
Glandular fever and tonsillitis 30 yrs ago, very bad childhood, depression, never recovered had good times bad times, swimming helps a lot, you have to find strength it’s not easy, I still suffer I have had 3 operations on my spin pneumonia and blood clots but I’m alive, happy day and sad days, this started 30 yrs ago as I said and I was very ambitious worked 7 days a week but partied as hard, my mum said when I crashed with whatever illness this is it saved my life. Sometimes I think I would had rather gone on till I did died than live with this for all this time, I am now disabled from a motor bike accident but I still fight, it’s just human nature to keep going. Have I thought of suicide yes many times but I won’t and trust me i felt as though I have reached rock bottom but I’m still here. Much love to you all that suffer whatever this infliction is.
It's a pretty tough illness and really critical to reach out for professional help whenever you consider any self-harm, so make sure you do that. But whilst there is no magic cure, people do recover from this illness, even after many years of being ill. Check out the recovery stories, hopefully you will discover some and hope in them.
Thank you so much! This explains a lot of my problems! I've been diagnosed with mixed connective tissue disease but I realize now it may also be chronic fatigue syndrome.
I've never been diagnosed with CFS but many of the symptoms there look familiar to me. Looks like CFS is a condition doctors are reluctant to give as a diagnosis because it's largely untreatable by conventional medicine. I just want to know why I'm always feeling like crap, every minute of every day.
Hopefully the explanation I offer resonates with you - ua-cam.com/play/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE.html
I think I have all the symptoms but no doctor I've consulted here in the Philippines even consider CFS. I've undergone so many tests and procedures including for lupus, colon cancer, hypothyroidism, diabetes, HIV, etc but all are negative. Recently, I had to quit my job. I just can't go to work because of severe malaise and brain fog. It's like having flu without the fever. I'm tired of seeking medical help and explaining myself without getting definite answers and appropriate medication. I was even given antidepressants but these didn't help at all.
How are you now wish you are better
Same exact story here. The antidepressants didn’t work because that is not what you have have. Try telling them tbe symptoms are a lot like long term Covid see what they say.
I wish more doctors would look into the connection between mycotoxicosis (systemic fungal infection / mold illness) MCS, MCAS, POTS & ME/CFS
Excellent video!!! Subbed.
I've had ME/CFS for about 20 years, and have many of these symptoms. Finally, a channel which really pinpoints the symptoms, because many people who think they have CFS do not!! After so many years, I KNOW that I have this, even though doctors will not acknowledge when I present symptoms. Lately, as I age, (I'm 65), IBS, vision problems, PVCs, electromagnetic hypersensitivity, sensitivity to almost all foods, chemicals, LED lighting, and orthostatic intolerance has made my life almost intolerable. Sorry about the negativity, I'm NOT depressed - just have no choice other than going along with whatever comes in any given day. Some days are obviously better than others.
I totally understand Elaine - let's face it, it's a rough trot sometimes. Hope you find some way today to make life just a little bit better. 😃
@@CFSUnravelled1 Thank You, Dan. You seem so well and fit!! I'm happy about that.
100% me .I have all these things. My symptoms are all of these ,especially today...shortness of breath. Thank you.I'm 73 .
Yes Judy, shortness of breath & 'air hunger' are normally missed out as possible symptoms of ME / CFS. I have heavy bloating each time after having a meal (even in small portion), which aggravates my shortness of breath. Unrefreshing sleep, PEM, brain fog / short term memory loss, lack of focus / concentration, constant muscle pain, mild joint pain in the lower limb section are predominant in my case. Hope something works out, tired like hell of this disease.
Have you tried LDN, I am looking forward to get it in India. Get well soon, all the very best!
Got a divorce at 60...first time Id ever lived alone ...was proud that i could do my own yardwork, rearrange furniture, take out trash...anything...about 5 years ago, amost overnight, it was like my body folded like a cheap lawn chair...everything hurts, eyes burn, pick up tge weedeater or trash and it feels like it weighs 200 pounds...cant get comfortable in bed...what the helllllllll
Sorry to hear that - sadly many of us have these experiences. Have you heard some of extreme experiences in the Fibro recovery interviews?
I've had the same primary care provider for the past 20 years. I'm doing my own research now because my symptoms are getting worse. I think I have CFS since I was a young girl. I have always had chronic pain in some parts of my body. When I was in college the only way I could study was if I came home, took a nap and studied as soon as I woke up. Now that I am in my 40s with kids.. I cant keep my house clean, forgetfulness, always tired, irritable.
Consult a functional medicine doctor
Doesn't sound like me/cfs at all. it's an entire plethora of symptoms, pain, and actual exhaustion right through the brain and muscles. Trivial comments like yours are why people don't take this severe illness seriously.
I have CFS for many years and struggle for many years. Excellent explanation! Thank you for your support!
You are welcome - hope you are inspired by the recovery interviews on the channel. :)
CFS Unravelled what dr diagnosis arthritis, fibromyalgia and cfs??
@@Ohkeh640 have you heard of the medication LDN?
Have you heard of the medication LDN?
the fatigue is like a battery- most people start the day fully charged- 100%- some maybe around 90% or even a bit less- but people with CFS start the day with their 'batteries' only at about 1/4 charge, some with only about 1/8 charge- and you wake up still exhausted- needing m ore sleep, but unable to get proper recharging sleep- and by 4-5 hours later- they are totally spent- and in need of a nap in order to recharge a bit more to have the stamina and strength to make it though the rest o f the day- some folks need a couple naps- just to get back up to the lousy 1/4% charge- with just a 1/4 charge, the energy levels quickly diminish and leave the body exhausted and too worn out to continue-- this isn't just a mild exhaustion- this is a deep disabling exhaustion/weakness- Try t imagine going through life with a constant never ending flu that leaves your body wiped out, weak, shaky, and exhausts you to do even the smallest chores- or to walk up a flight of stair leaves you shaky and weak for several minutes- that is what CFS feels like-
I have suffered with this for 10 years and every symptom has been recorded and the treatment stays the same with no lasting result... thank you for listing so many as many of us with cfs feel as though noone believes us.
It's crazy isn't it!!? I created this video to help spread awareness - hoped it might go viral, but it is still needing to build traction - let me know what you think : ua-cam.com/video/esml2z8gKFc/v-deo.html
20 for me and I am sorry to tell you it hasn't gone its got worse.
I have found that medical marijuana with CBD oil has helped with some of the pain.
@@charlottezipkey9217 Cannabis is honestly my only relief. It really adds to the stress knowing I could be arrested for medicating!
going Keto has almost completely removed my ME/CFS problems in all of 6 weeks. Im 14-15 weeks keto now and loving life. no aches, pains or brain fog/ confusion and constant exhaustion completely gone. No longer hungry, no longer tired waiting for my next treat/ snack / meal have energy all the time and am functional again. i can still sleep 14 hours a day and feeling crap, but it goes so much faster and if i do have to get up"early" i can cope with it so much better now
Glad it helped you - many people find that a restrictive diet like that triggers them into a crash - so people react differently. Once you have been fully well for 6 months, feel free to contact me if you wish to share your recovery story. :)
@@CFSUnravelled1 I would love to do that. I haven't found the diet restrictive in any way it's more than mindset than anything else but coming from a already restricted diet being a celiac it really didn't bother me to leave behind the pasta and the breads and the pastries and pizza
T Cook what do you eat? And how long did you have chronic fatigue?
I wish Keto worked for me. Tried it for 2 months straight. Nope
I’m trying carnivore. So far the relief on some symptoms is encouraging ❤
15 years ago I was injured at work and never got better. Lost Everything! Thanks to my brother telling everyone I was Faking and a Drug Addict. I wish!
Sad, shame how people can be so willing to believe the worst, and how hard it is to convince them otjerwise after the fact
as I was watching this video, I realize this was what I was looking for. It’s been like this for me for over 20 years and now they’ve had it on rheumatoid arthritis problems with my balance swelling in my legs, not being able to stand for any amount of time without getting extremely dizzy worse IBS continual incontinence it seems like the list goes on and on finally somebody tells me that this list is connected with chronic fatigue which I’ve had for over 30 years I’m tired I’m 70 years old and I’m tired than I would ever in my whole life. Thank you for telling me so many things and know that I will be talking to my rheumatologist about the symptoms. Thank you.
God. It’s so hard everyday! Can’t keep a day job.... and nobody believes in it either.
Bradley French I hear you, it’s very frustrating.
Very real and frustrating
I'm glad I was diagnosed w/EBV, which I think has a lot to do with my 3 diagnosed autoimmune diseases. I felt like I could point to something and not be labeled a malingerer.
Now whenever someone asks me about it, I can point them to this video. 😊
I can identify with many on this list. The emotional "flattening" is interesting to experience. The "flattening" in my case is proportional to how "tired" I am.
Edit: the benefit of this video is I don't have to struggle to remember all the symptoms.
Thanks Dan 😊.
that is the same with me.....
I suffered from this for 7 yrs. Just since this year, I feel 90% ok.
Great to hear - keep doing what you're doing and go until you are fully well. Would love to share your story with an interview if you are interested. :)
@@CFSUnravelled1 I can share my story but I'm a too shy of a person for an interview. Also, the stuff I explored & found relief from is not exactly popular. Involves use of illegal substances.
Thanks for the offer though.
Once you are fully well, contact me via the site so we can discuss by email. Interview can be done without video, just using your first name or using a pseudonym.:) Here is the link: cfsunravelled.com/contact/
@@CFSUnravelled1 I am actually getting cured from this after nearly a decade of suffering. I'm lucky enough to be living near stanford unversity where research on CFS is taking place. I personally know some of the top researhers there. Anyway, I'm aiming to get fully well by March 2020 which is my my daughter turns 18. She does not remember seeing me well ever. Would be glad to get interviewed once I'm fully well. I shall contact you. Thanks!
I think I may have had this for most of my life without realising it, my daughter has fibromyalgia anyway and lately in the last year my son is showing some of these symptoms too. But of course I will get us both checked out with the doctor first . but thanks for sharing this information. 👍
Helpful. Seeing doc tomorrow and will take list of symptoms due to brain fog.thank you
I have been battling CFS since 2009. I am unemployed and on SSI now. My family thinks I am "faking" it and have turned their backs on me. If it wasn't for my daughter supporting me I would be living in my car. It f*cking sucks and I did all the tests and specialist only to be told I was depressed. I also have type 1 diabetes and multiple complications from that and hypothyroidism. Now I stay home alone all day and have quiet hobbies like drawing and watching Utube. It never gets better, you just learn how to deal with it more and incorporate the limitations into your life.
But we are the strong ones because you know other people could not endure our struggle!
Power B*tches!!!!! 🥰👍🏼🙏👊🏻
Thank you for your site. I have several of these conditions. It all makes more sense now. Thank you.
Having CFS/Fibromyalgia is a living hell some days I can't even get out of bed 😴
I have suffered with these illnesses for over 35 years. I was first diagnosed in 1994 with what was then known as Chronic Fatigue Immune Dysfunction Syndrome Syndrome (CFS ((
Now they talked about SEID and of course many people talk about ME (some suggest that's something else - which it isn't). Frustrating right!
I currently am having Severe relapse. I can barely touch my scalp even the slightest touch is like every nerve ending is on fire. Is this normal for Fibromyalgia? Also my ME/CFS is the worst its been in quite a while 😭💔. Its all I can do to get to grocery store about 5 minutes away but I am a Born Again Christian and I know that GOD'S GOT THIS and HE is JEHOVAH RAPHA Our HEALER and the GREAT PHYSICIAN!! GOD BLESS YOU!! Have A BLESSED Week!! THE JOY of the LORD is Our STRENGTH 🙏💜🙏💜
I have been diagnose with CFS 30 yrs ago it has literally stolen my life.I'm mostly housebound.Now being blind from one eye I'm finding it difficult to see from the 'good' eye and am afraid I'll go blind,Had no idea that it can be a symptom of cfs which causes eye pain and getting blurred vision,...tks for the video clip!
Doctors don't believe I can pinpoint the onset of some of my symptoms - the exact moment in my life. Insomnia, loss of libido and when my energy left me like a balloon being pricked by a pin - like a broken winded racehorse, in the middle of a mountain biking event, at full exertion up a steep hill. I barely managed to finish, previously always coming in around the middle of the field, being an older person in open races, and have been short of breath ever since then, excercise exhausting instead of making me fitter. My diagnosis is fibromyalgia, and I definitely got anxiety and depression from it, having led a very active lifestyle, to the highlight of my life being able to lie in bed and watch TV. My husband doesn't really understand, so I end up in tears very often, whereas I was emotionally stable all through my life. Having an invisible condition is not for sissies!
I have heard countless people tell me about such moments. People often don't get invisible illness, it's not really their fault - hard if you haven't experienced it yourself! However, the key thing to realise is that whilst there is no cure, people do make recoveries even after many years of illness. Rarely are these accidental - the key is understanding how they do this. Have you watched many recovery interviews? ua-cam.com/play/PLYGv2houTixnrfxc1uvVbfbcTWhSNz4vq.html&si=EnSIkaIECMiOmarE
I hate my chronic fatigue. It's definitely not normal I have no excuse for it. I'm not lazy by nature and I feel guilty as hell because of it. Its not normal to be so damn tired. Now if I were working becides keeping my housework then it would be different I would then have a good excuse for the exaustion but I don't. I'm miserable because of the exaustion
Yep, in a world where we are shown and compared to productive people who achieve so many things, of course it's going to be depressing being forced to watch it go by from a bed. Your story sounds just like mine
Thank you! I'm almost at the point of giving up.
I gave up, that was a mistake. Never give up! Listen to the ME/CFS recovery stories - cfsunravelled.com/me-cfs-recovery-stories-patient-me-cfs-stories-with-a-difference/
Thanks for understanding I was losing hope
I have had cfs for 7 years. Took away my life. Was once employee of the month before this. I also have sever rapid cycle bi polar, borderline personality bpd, adhd, anxiety and panic disorder, sever obstructive and central sleep apnea, hypersomnia and insomnia. I am also in recovery for heroin, meth, and xanax addiction. Life has been hellish.
Sorry to hear that - I hope you find little ways of making your life better every day.
Thank you for this, I have almost all of these symptoms from both lists as well as paralysis of the limbs and brain that comes on with crashes. So I think severe weakness or paralysis is missing from the list unless it's just me...
It's not just you. While I currently don't suffer from this paralysis, I have certainly experienced it in the past.
Hi my mom is having this heaviness and stiffness in her chest she does not feel any pain she cannot sleep although she wants to bit comes with constipation along with her finger getting thin can anyone please tell me what this is
Not just you.
Not just you!😥 feel like im hanging by a thread! So tired of it!!
Yes, I am so tired all the time and up suffering from IBS symptoms. I just got up from a 4 hour nap and still exhausted with cramping. Today was such a struggle to stay awake. I would have occasional sharp pain in my shoulders and wonder what the hell is happening. Is it going to be a stroke? No. I can't pin point it out. I used to joke to my coworkers saying I have it CFS because I was tired everyday, but now i really dont think this is a joke anymore. Its getting serious.
This is totally me! I keep going back with new symptoms and by the time I go to get the test sometimes it’s not as bad. 😜😢 For example I had a muscle test (EMG) but when I went my symptoms were not really present. But before I had really bad pain and muscle fatigue to where I couldn’t walk sometimes. Didn’t knew what I had was M.E. Hopefully now my doctor can verify it.
I am no doctor, but have ME/CFS. Since I take Low Dose Naltrexone (LDN) I have deep, refresshing sleep. This is the first time I sleep well sine diagnosis 3 years ago.
40 yrs for me..gave give the exact date too!. I am going to show this video to my dr!! I AM NOT MAKING IT UP- has been said so many times that I've stopped going to the doctor now..I gave up!!
I suffered from CFS for a long time too I found a paleo type diet was helpful but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
Please try accupunture....it's helping me..
It is very similar to fibro . I wonder why they separate it. I know you want to say fibro is more pain and this is more fatigue. But fibro has extreme fatigue too
There is way more to fibromyalgia than pain!
Yall dont give up,i changed my diet!Minimize my gluten intake eat more vegetables, more fruit!It's hard i overstand the doctor look at me like im crazy when told them what was going on with me not having no energy at all
I have had ME/CFS for over twenty five years. I never go to see my doctor and haven’t for years. Getting an appointment is well nigh impossible and reporting to them and dealing with their attitude too exhausting. I manage with homeopathy when needed, reflexology, physiotherapy and daily cold water treatment. I am seventy this year and accept that if anything over and above the ME/CFS happens so be it. My ME includes JHS, POTS, labyrinthitis, PEM, IBS, brain fog and hypersensitivity to sound etc. Even I get bored with the symptoms and now treat them as ‘normal’ me and work around them or with them.
The most debilitating and frustrating symptom is probably the POTS as it comes on suddenly with no warning. I can’t stand still for even a second but have to keep moving to stop it happening. This has been the case since I was a child and pre dates my glandular fever and JHS diagnosis, and well before my ME/fibromyalgia diagnosis.
However since starting cold water and other therapy a few years ago my attitude has changed and I am much more willing to embrace symptoms and push my boundaries without fear. This is improving my quality of life even when I get a symptom crash. Understanding and eliminating my fear of symptoms is the best thing I have ever done to aid my quality of life.
Thank you..I am at the end of my rope..and as the list was scrollin away..I was absolutely stunned...this is real...what I am going through is real..I just posted a video on my channel talking about this..and now I have a medical term for it...
So sad that we are made to feel like it's all in our head when it's clearly a real physical illness. Speak to your doctor about ruling out any other illness before getting a diagnosis.
@@CFSUnravelled1 I am trying to recover from RA.but the emotional drop was my biggest red flag...Thank you for your reply..I shall speak to my doctor..
My Thanks... Excellent to the point on symptoms and what can happen when these symptoms are misdiagnosed as a more serious illness, mistakenly and treated as such.. Yes, very frightening, this syndrome is not to be taken lightly as you experience them either chronically or fleeting. After 35 yrs. most or all of these symptoms I have had to deal with in one aspect or another. My only advice, Big Pharma is not the route you want to take. Holistic, TCM, any Alternative for long term. Learn your body, observe, research, "Faith"..May you all be blessed on this journey you are about to encounter, yes it is a "bitch". Good Luck.. My thanks again for this video..
I was misdiagnosed with lupus (they might decide at some point, it is in fact, lupus after all *eye roll*! I also threw an unprovoked blood clot in my femoral artery and hemorrhaged, all the symptoms I have are also found in lupus. Turns out, I have CFS! Imagine the dire consequences if I was put on meds?!!!
This is so good. I lost my job a week ago. They said they would work with me, but as you know because they can't see it they stop believing you. Been 6 years and now I don't know what I'm going to do. I can't get another job but I don't have doctors that even know what PEM is or believe that it's real.
The lack of understanding is frustrating and unhelpful which is why advocacy is so important. Perhaps this videos helps? ua-cam.com/video/esml2z8gKFc/v-deo.html
CFS Unravelled I will watch this but my office or any work situation will immediately not hire me if they saw this.
I'm up at Mayo Clinic - got my appointments tomorrow. I'm showing them a lot of this research. I hope someone here knows a lot about it!
There are some really good people at the clinic - I don't think you'll have that issue of the doctors there not believing you or not understanding PEM. They understand there is no magic cure, but hopefully the doctors will believe that recovery is possible and help you to start building your strategies and give you appropriate support.
Bradley, i feel so bad for you!! I know exactly how you feel! Had this for more years then i can count! Ive tried mega doses of b-12! The doctors are baffled cant find anything wrong! They think its in my head! Dear God if they only knew!! 🙏🙏🙏🙏🙏
Hello all sufferers of ME/CFS. I wish you all the best!
I have several auto immune diseases. Ankylosing Spondylitis and Psoriatic Arthritis and my major diseases. Sjogren's syndrome, Raynaud's phenomenon, and of course psoriasis. My rheumatologist has written in my records probable lupus but because there's too many overlapping symptoms they can't say for sure but every time he does the appropriate blood work it always comes back positive. I don't know what kind of blood work they do for a lupus so I don't know if there is a "lupus" test, but he tells me there's 3 blood markers that tests positive.
thanku for this video. thank u for showing how real and important a condition like cfs or me is ❤❤❤
I got sick 9 weeks ago and have been suffering from disturbed sleep and some of these symptoms. It looks like right now I have Post Viral Fatigue but I'm terrified that it will lead into CFS. My energy is somewhat improving slowly, i.e. I can exercise, walk, and go for bike rides but if I do too much I will feel more tired the next 1-2 days. For example when I exercise my throat may get slightly sore, and I may get a slight running nose. My sleeping has been terrible, always waking up and trouble falling/staying asleep.
I wish my dr. understood like you do.
There are many doctors who understand this illness and focus on a multi-lateral approach for recovery including orthomolecular and lifestyle medicine. You may need to look further afield, but focus on what YOU can do to help yourself first and foremost!
One of the most profound and distressing symptoms = extremely severe sensory sensitivity and overloading...feels like being tortured by my own senses - the quietest sounds is unbearable, the curtains closed, sunglasses on and eyes closed and still too bright, severe orthostatic intolerance so cannot even use a pillow, heart palpitations even when I think or move my little finger, intolerant to most foods, difficulty speaking, breathing, choking on my own saliva.
I have this. It's horrible!! I've lost jobs in the past because I'm too sleepy to keep up with my work. I have many of the symptoms and take far more meds than I care to. The newest thing, rapid hair loss. I'm devastated. I try to never leave the house. Always wear a ballcap now. I never thought I could feel worse about myself than I have in the last 4 months when it really started coming out. Drs don't know what to do anymore. Between scripts (10) and vitamins (5) I take 11 pills each morning and 9 at night. It's just become too much to deal with most days. I have found that 2 5hr energy shots a day keeps me up for a little while at least.
when more symptoms are in the “you’ve had chronically” category than the “you haven’t had” category since you were 7-8y/o:👁👄👁
when you’ve been wondering “wtf is wrong with my body” since you first were a sick kid for a couple of years and celebrate every answer including learning the names to your symptoms: 🤩🎉❤️🧡💛💚💙💜
I’ve read that there is now a distinction between ME and CFS.
I was diagnosed at the Mayo Clinic with CFS and FM. I wasn’t satisfied with those diagnoses, and was certain something else was going on. So I saw a geneticist at Vanderbilt who refuted the FM diagnosis, confirmed the CFS diagnosis, and diagnosed me with Ehlers Danlos Syndrome. My health has rapidly declined over the past 8 years. I’m miserable.
I am sorry to hear that. It's important to make sure that diagnosis are corrected, so getting a second opinion is always important - that of course includes for the diagnosis of Ehlers Danlos Syndrome. As you can see on this channel, I share lots of stories of people that recover from ME/CFS/Fibromyalgia/POTS. I am uncertain if ME/CFS/FMS is comorbid with EDS or a separate diagnosis - hope to share a ME/CFS/FMS recovery story from someone with EDS if that is possible :) In the mean time, remember that there is always something you can do to make yourself feel better, if not physically, then mentally and emotionally - always be kind to yourself. xx
CFS Unravelled - Thank you so much for the reply. I wasn’t expecting that. My health declined rapidly after having an epidural injection in my spine for a herniated disk. This caused my adrenal glands to fail. I was misdiagnosed with Addison’s disease. After two years on daily oral steroids, I was able to very slowly ween off of them. But I’m not sure my adrenals have fully recovered. This episode prompted my journey to find a diagnosis for all my strange symptoms and pain that I had been living with for years. Everything worsened when my adrenals failed.
I did see a second geneticist in my hometown to confirm or deny the EDS dx. At Vanderbilt, I first saw a genetic counselor who interviewed me, then the doctor examined me. The interview was long and comprehensive. I did not see a genetic counselor at the second opinion appointment, but my physical exam was much more comprehensive than the first. The second geneticist confirmed the EDS dx. She even called a medical student into the exam room to show him my “textbook” features, and lesser known features that they often don’t mention. I was diagnosed as having the hypermobile type, but my symptoms overlap the other types, which is common. I was tested for vascular EDS. I do not have the mutation associated with the vascular type, but I do have a different mutation on that same gene. It’s significance is unknown, but thought to be benign. I’m not so sure.
I don’t know if CFS itself is actually a comorbidity of EDS, but I do know that many EDS patients struggle with chronic fatigue and post-exertional malaise and pain. POTS and other forms of autonomic dysfunction are considered comorbidities. Long before my EDS diagnosis, I was diagnosed with orthostatic hypotension and inappropriate sinus tachycardia separately, along with episodes of SVT, but I can’t get my cardiologist to test or diagnose me with POTS specifically. He said a tilt table test is unnecessary.
I live in the U.S., and have obviously travelled to different cities to find a diagnosis for my declining health. I live in a big city with a respected teaching hospital, yet I can not find a local doctor who treats EDS specifically. None of my current doctors know much about it, and don’t care to learn. So if I have any comorbid conditions, such as a mast cell disorder, they don’t know enough to look for them. They all still consider EDS to be a rare condition, when in actuality, it is merely not often recognized and therefore, under-diagnosed.
Before I became ill, I was a successful software developer and super mom. Two years after my diagnosis of EDS, my husband left and I lost my health insurance. He did not want to be stuck with someone who is ill. (Fortunately, by this time, my son was away at college. He does NOT have EDS.) Now I also suffer with major depressive disorder and anxiety.
I have a very long list of symptoms, but the two that are the most debilitating are the pain and fatigue. I am under the care of a pain management clinic, but they put me in the same “box” as everyone else, even though I am unlike their other patients and have needs that should be addressed differently.
I feel like if I could just get the fatigue and extreme post-exertional fatigue and malaise under control, my quality of life would improve drastically.
My hope and efforts wax and wane, but I have not given up completely. I’m too young to accept this as how I will live for the rest of my life. If I find a solution and am able to recover, I will certainly share my story with you.
You need to apply for SSDI - and don't be dismayed if your claim is rejected. Well over 75% are - what you have to do is appeal. Get an attorney who's experienced in disability insurance; she/he works for a percentage which is set by law (It isn't a lot) which also means that if you are denied you don't pay anything. But when you get your SSDI, you'll automatically get medicare, so you will have medical coverage, which is vital for everyone but especially for people with current medical conditions. I wish you well.
I feel like crying. It seems as if this a light into an ongoing problem. How do I get my doctor to listen? She says I will need to come in when this is going on but how do I do that when I am too exhausted to get out of bed? When it is going on I don't need to sleep I HAVE to sleep sleep sleep until the worst of it passes.
that weak i cannot cry Barbra. gentle hugs honey x
Look into Gaba medication, helps with neurotransmitters in the brain and is used to treat CF
Had been in a car accident,( I took the brunt of it!)
A year later, my life as I knew it, had ended, I’ve had a three year nightmare!
Trigger fingers, low back spasms, nerve pain shooting all over, rib pain and tenderness, hip bursitis, vertigo, osteoporosis....I was a performer ( singer) and LOVED the simple things in life, now, I can’t even sleep( always in pain)😞
I have had trigger finger in three different fingers Never Associated it with the M.E. I was offered a steroid shot or surgery. I had it really bad in my thumb and then the middle fingers on each hand. I didn't want to get the steroid shot I was too sick to make it back to the doctor so I just put a splint on my finger and kept it mobile and they completely healed. It took a good month but it worked. I wasn't expecting a cure oh, I just splinted it because it was excruciating. I hope this helps a bit.
Thank you for this video. I have had this diagnoses over 30yrs and gastro intestinal disorders after gallbladder removal 2 yrs ago. It's been a rough ride, bit I raised 3 wonderful children and worked and continue to work fulltime. I try to ignore some of the symptoms and carry on, but my current doctor looks at me like I'm crazy or faking. He does little to nothing for me but reorder medications I've been on from my previous doctor who moved 2 years ago. I know I need to see someone else.
Sir
I have all these ..suffering fibro since so many years. The fatigue i started getting since last 1 year. Luckily no irritable bowels syndrome, pains many types, sprains, stiffness, numbness.. going on. Fatigue is horrible. No one feel or believe as i look healthy to my elders. Its most painful , no one feels or believe when i am suffering so much..i am unable to take any medicine ..all give me very dangerous reactions. So please keep going with this disease which help ppl control or cure this condition sir.
Me too
It’s really the opposite of ‘fatigue’. You WISH you were able to sleep but can’t and also cant function like a car out of gas.
I was diagnosed with fibromyalgia 3 years ago after suffering symptoms for 30 years . At my worst I struggled to walk , couldnt think properly basically had every symptom on that list .My doctor basically said there was nothing he could do besides try low dose chemo which didn't sound that appealing. I had been taking prednisolone which helped alot but isn't a long term solution . I was on the brink of "checking out" when i stumbled across this channel and that of dr Ken Berry . Ive been eating mostly a carnivore diet for over two years now and feel better than i did when i was 18 . Im now almost 50 . Carbohydrates fruit and sugar are off limits for me . Each time i try to reintroduce them my symptoms come back . Dont give up .
There is always hope .
I tried Atkins. Fail .
Glad that works for you. It hasn't for me
brain fog that won't allow to read or watch TV, can't concentrate at all. And feeling of being wired 24/7, like I can't rest ever.
Sorry to hear that - I get how tough it is sometimes. Tomorrow is another day, hopefully you feel a little better soon. When you do, grab this free e-book I wrote some time ago - cfsunravelled.com/discoverhope/
Excellent!
Great video! The problem now is, we know all the symptoms, but where are the treatments, fixes and cures...??? 🙁
There is no single magic fix all cure - however, people make full recoveries from this illness in all manner of ways. Check out the recovery interviews on the channel! ua-cam.com/play/PLYGv2houTixnrfxc1uvVbfbcTWhSNz4vq.html
I've found that onions make my symptoms worse. Trying to cut out onions and foods containing or flavoured with onions. Garlic and leeks are also in the onion family.
Try it for a week and see if it helps!
CFS since 1998 - am responding/improving to the Wheldon protocol for a cpn infection as the cause. The first 8 months of treatment were brutal - worsening overall. I suspect most that are infected interpret worsening of symptoms on antibiotics - as not working and quit antibiotics.
I think I am suffering with this, ever since I first had covid. When I have what I call a attack I feel so ill and exhausted I wish I could just die. Then I sleep & it can take me up to a hour to come around when I wake up. I have been put on beta blockers for my heart , I have trouble breathing sort of breath, I go clammy and sweat just walking, dizzy & feel sick also blurred and tunnel like vision. Short temper, I forget things at times along with poor concentration levels the list goes on.
For the first time ever I actually feel heard
Good list thanks for making these videos 🙏
Thank you 💜
I have been suffering with this, fibro, and I believe possibly EDS as I’ve started dislocating, since my late teens. I’m 55 now. I really wish I could find some help. But I’m tired of the run around. Every time I leave a doctors office I feel worse about my situation. It’s really not worth it.
the hummingbird insitute has a very comprehensive list for M.E/C.F.S
Thanks for sharing. Do they have other helpful resources? What about to help you recover?
There is also a connection btwn Me/Cfs and connective tissue disorders like Ehlers Danlos Syndrome. There has to be a reason why it is more prevalent in our community. I hypothesize that maybe the MTHFR gene is to blame for deregulation of our body systems. We then can't shake infections any stress we incur and our autonomic nervous system is in hyperdrive keeping us in fight or flight. I am my own md now and the only thing that has helped me is adaptogens and trying to detoxify my body. I pace my activities and if I have symptoms after activities of a crash I proceed by cutting what I did in half called finding your energy envelope. Those who have recovered and are on you tube are the best advice givers. Listen to your body and quit ignoring it's signals of when to rest.
Hi Lory - thanks for your thoughtful comment. Yes I agree, there is a reason, it's not co-incidental. I haven't explored this in enough detail to make a meaningful comment, except to say that I don't believe it would be the MTHFR gene. I haven't connected much with the ED community, but it would be great to share a ME/CFS recovery story of someone diagnosed with ED one day.
I also have hEDS (waiting for the test results for other EDS forms.) I am also compound heterozygous MTHFR. I've also been struck by lightning and had a terrible case of Valley Fever. I'm sure this all ties together with my CFS and Fibromyalgia.