7 Painful Truths About Fibromyalgia
Вставка
- Опубліковано 19 бер 2017
- Fibromyalgia can be an isolating condition. Here are 7 main problems that Fibromyalgia
sufferer's may go through in their recovery journey.
- Pain (invisible)
- Fatigue
- Guilt
- Brain Fog
- Worry
- Frustration
- Lack of understanding
To apply for our recovery program click here www.cfshealth.com/form
Website - cfshealth.com
I've just randomly started looking into this stuff and I'm literally crying I just can't imagine. anyone with fibromyalgia, you are insanely strong. im a recovered addict, which probably seems strange or wrong to compare, but withdrawals are kinda like this and I almost committed suicide plenty of times because of the pain, anxiety and the worst part was the endless throwing up. to picture having this all the time... you guys are warriors. just wanted to say that.
I have fibromyalgia and I agree.
you rock, too
Thank you for your compassion. God bless you.
Thank you for understanding and for your words of empathy. I've had this condition for 28+yrs now and my live for the most part has been a living hell.
Thank you so much. It is so frustrating to want to clean house & get organized again but it hurts so bad that I can't do it anymore.
I'm sleeping better so that helps . Thank you for caring.😍
One of the most frustrating things I've found is that once fibromyalgia is in one's medical chart, there is a stigma associated, and medical providers make assumptions about us. (That we are people who simply don't cope well, or who complain a lot). Also, once the diagnosis of fibromyalgia is in the chart, doctors tend to attribute all our symptoms to fibro, rather than looking for other possible causes for symptoms. This can compromise our medical care. I've noticed this especially with my mom, who is in her 70's and has multiple other health problems.
You're right, I have ehlers danlos too, so I dislocate and partially dislocate joints and sprain them all the.time .a rheumatologist said that all the pain is from fibromyalgia... Okkaayyyy. .. So dislocated joints don't hurt then. I was exhausted, felt awful, it's fibromyalgia... Nope my vitamin d was so low it was barely on the chart. I Was diagnosed years ago, before eds diagnosis, apart from sleep issues I don't think I have it tbh.
omg thats exactly what the doctors told me even though I KNOW it's EDS pain in some instances they would just be like "its fibro" like as if i cant differentiate them
Hi, So I too have had the exact issue with many doctors. I have been lucky at times to have a doctor that did listen and do all they could to see if what was going on was non fibro related. Unfortunately the doctor I had recently like that is no longer in the area. My doctor now feel has little experience with anyone like me with my conditions. So I'm on the search for a new doctor. My advice is if you have a choice with which doctors you can go to , because I know with some insurance doesn't allow this option. Then continue your search for a doctor who will look at new issues or existing ones without always labeling it a Fibro issue. If you see a pain management doctor or other doctor you see regularly outside of your main doctor. Don't be afraid to ask that doctor or their staff members for recommendations. Honestly they are usually very aware of the good doctors in your area. I hope this helps some. Wish you luck finding the doctor that will look at all of you not just you're Fibro
Feels like they do the same with depression or autoimmune inflammation
I agree , i reckon i could go into see my Dr with my arm hanging off and he would say it was my fibro ,
After decades of suffering, I finally found a doctor who would listen and understands this condition. I have been suffering since I was a teenager.
About fifteen years ago, I read an article on Fibromyalgia and I shouted, "omg! This sounds like me!". I went to my doctor and told him about what I read and that it sounded like me. He said that Fibromyalgia didn't exist and made it sound like a psychological problem, not a physical one.
Fifteen years later, I'm in constant pain, like a really bad flu with horrible body aches. I get stabbing pains in my thighs. I have horrible migraines that are so bad that I will sit in a dark closet trying to get some relief because light hurts. I'm hypersensitive to light and certain loud noises. I have terrible insomnia. I have hemorrhoids due to IBS. My bladder hurts all the time. I go from being so hot it's hard to breathe to bad chills all day and night. The brain fog gets so bad it makes me sound stupid. Severe depression and anxiety.
I just moved to a different state and had to find a new doctor. I sat with her and began describing my symptoms to her, before I finished she looked me and told me my symptoms and conditions all point to fibromyalgia and interstitial cystitis.
I've lost friends, family, jobs, and my home because of this. At family gatherings, my parents would sometimes call me the family hypochondriac. I stopped going to things because it just takes too much out of me and everyone let me disappear.
I've been mistreated by people who were supposed to care about me. I've seen them roll their eyes when I say I don't feel well. "Yeah! We've heard it before!" "You need to stop this, you're depressing to be around!" "You do realize that this pain is all in your head." ....for more than forty years.
I was a dancer. I'm a singer, actress, writer, artist who can't do what I love most of the time. I feel like my life is being stolen and I'm all alone in the world. I've finally been diagnosed and even with this diagnosis, I still have people who don't believe me. I am so, so exhausted.
I feel your pain. If you haven’t already, look up Dr. Ken Berry on UA-cam and try a carnivore diet or keto diet as he recommends! Dr. Berg also has so much great health advice.❤️
Did you look into oxalates?
Have you found any improvement / relief since posting this?
@heathergreenhalgh2289 Wow, I posted this three years ago. Thank you for asking.
Some things are better thanks to a handful of vitamins and a few medications. I take something to help me sleep and it works most nights. Nothing gets rid of the pain completely but I can manage most days.
Other things have deteriorated, I started using a cane around five months ago due to balance issues. A few days ago, my physical therapist suggested I try a walker for a little while. If he was looking for something to motivate me, he wins. I'm 61, I don't want to have to use a walker but I'm swallowing my pride and I hope I'll only need it for a short time.
I've been referred to a neurosurgeon because I now have a neurological deficit on my right side. My doctor doesn't think it's due to my Fibromyalgia, though. They're looking for lesions, if they find them, it means MS.
It's been a journey these three years and I still have only scratched the surface. Now my insurance keeps denying me for things my doctor needs in order to find out what is going on.
...you have to keep moving forward and looking for answers, so, one day at a time.
Take care
@@tinabouman5835 my mum has severe ms hypomobile I thought my fybromyalgia was ms but MRI clear 4 years ago hope it isn't for you
The pain feels like the aches and pains you may have felt during a really bad bout of the flu, but it is unrelenting and you might feel muscles burning and some stabbing pains. Yet your blood tests won't show anything. The pain affects sleep, poor sleep means more pain, and the cycle continues.
Darla Dixon Its a never ending living nightmare.:(
Very true
I flop around like a fish out of water when I'm trying to sleep. I can't lay in any position for more than an hour. I would say on average it is closer to 30 minutes. I wake up every time I move. I haven't slept well in over 25 years. I'm so tired, I have zero energy no matter how much I rest. I take Duloxatine for My fibromyalgia, and it helps but I've already had it increased once and I just started this treatment 2 years ago. I will be going into the Rheumatologist again soon to inform Her that I am having inflammation issues as well as energy issues. I enjoy physical activity, but the lack of energy is concerning because like stated, I feel like I'm stuck in a vicious cycle of extreme fatigue and pain. I'm so tired...
The worst is that your loved ones don't understand. I am going through all 7.
that's exactly that's exactly what I just said to myself that the worst part is the family doesn't understand nor seem to care but I think it's out of they don't understand and so they don't know what to say or do and then sometimes I think they just don't care but I don't think that's so in my family but I know it can be so and I have used the analogy of a broken arm so many times it's not even funny and I even broke my foot last Summer and I would say to people you see this cast on my foot my leg I had to wear a big boot I said you see that I said what does it tell you they said broken foot broken ankle I said exactly I said but I can't wear a cast for my fibromyalgia but it hurts every bit as bad when I have a flare up and I have it every day but flare ups you know are worse or even worse and I have chronic fatigue so bad it's ridiculous and all I want to do is lay down in the bed I don't necessarily sleep I just want to lay down I don't want to sit up I don't want to go anywhere and I do I do make myself go to church most of the time and once in awhile I will do some church activities I'm retired so I'm payday I go buy my groceries and I do live with my brother but he has really good health and it's little difficult for him to understand but I also have I hurt back which I just had surgery on so all of that together you know is difficult for people to understand so it's not that you're mad at them you just wish they could see you for you know if we could show our pain on a little monitor on our body then mine would be off the chart almost all the time so I just wanted to reply cuz that is the hardest part is family and friends not understanding they want to but they don't
@@karenking5357 this is also what I've been experiencing from my family. They don't seemto care at all:(((
“Oh, you look so well “ - AKA your only putting on an act!. 😢😢
In tears after watching this, struggle with every one of these things. Having a lack of understanding from friends and family is one of the hardest things! When you said if people with fibro wore casts, they would be wearing them all over, I wish people could see it and understand this! This saying needs to be a quote or something on fb, maybe then it would be shared and passed around and maybe then other people would better understand fibro. It is so hard to explain and people don't understand what fibro involves, emotionally, mentally and physically.
Thanks for this video, looking forward to watching your next ones on fibro.
Bethany,
Hi, I too share the lack and understanding from friends and family members.So much so that it's caused falling outs. I know how hard it can be on top of dealing with the pain from the medical conditions. Is something I continue to really struggle with.. My "good days" are so vey vey far and few between these days. I've found myself look to find anything and everything that can distract me from it all, well as best as I can anyways. Like watching videos on here, tv, crafts, and time spent with family. I hope you are doing well and here's to the "good"days no matter how far and few between they may be.
Best Wishes,
Nicky 😀
me too Bethany I struggle with every one of these and the thing I've said so often is if I had a cast on my body you would know I was in pain but the fact that you don't and cannot see my pain then I know people think I'm either crazy or just looking for something to complain about hypochondriac cuz I have other issues too and so it's horrible it's a horrible disease I want to know where it came from cuz you didn't used to hear people talk like this and now so many people have it
thank you the pain and fatigue get to me all the time and nobody listens or understands
Jessica Berry
I understand but most people don't I know the hell your going through
Idem 😓
Worst is begging for help every time you see a dr and they sort try to say "come back for check up in 6 weeks" like it's just 6 weeks, no big deal.
Fibromyalgia is a life of hell! Took me 40 years trying to get Dr's to listen! Until I could barely walk with a cane, the pain was so severe and I was being seen by a Neurosurgeon who looked at me and said I had more pain than what he could help with. The CFS began for me at the age of 11 and has continued to worsen over the years. There's a photo of me in one of my high school year books where I'm sleeping in my Social Studies class. I used to get teased. But today, I can sleep for 3 days. I've even fallen asleep with food in my hand, just trying to eat something. Panic Attacks are hell. I have Brain Fog, can't think of words, remember things, or even watch TV without rewinding constantly. I really don't see my way out of this black hole! Just standing for any length of time takes a lot of effort, let alone cooking or cleaning!
MiMi Joys1963 I could of written your comment....have you found any relief?? I don't want to be in a wheel chair but that's my next option....
MiMi Joys1963 I feel every single bit of your pain. I hope by this point you've been diagnosed properly and have some sort of relief. It's such a hard life.. I wish you the best honey!
I it's not going to help but your not alone. I've had it for 28yrs and I've got all the symptoms you describe and more. Your totally right it's hell on earth. My prayer are that God would send a cure soon. God bless you keep fighting .
How are you now
That sounds exactly like me
I’ve had it since 1994 : before it was recognized ( Quebec ) I lost job, house and family. Even today at 70, I was a karate teacher and very active. Thought a lot about suicide. Takes me 3-4 hrs in morning to be able to start the day. They ( Drs) still don’t know how to treat it.
And those 7 problems I mentioned are very true! I avoid making appointments or comite to doing something because don’t know how I’ll wake up and having to decide what I’ll do in a day or 2 makes me very anxious. Lost circles of friends and family because they don’t think it’s that bad. If I mention why I can’t go somewhere, some think I’m complaining so I don’t talk about it. Cannot stand cold water, i live alone and withdraw more and more from society...
Hey! Checking up on you to see how you are. ❤️ I'm in my 60's and had it since a teen. Need a wheelchair and carer to push it when I go out.
Suicide is a daily contemplation.. I understand.
We are truly warriors. We are heros. It needs no-one else to validate this.
Only we know what we go through and I for one know that you are amazing.
Sending Love .... 💚💙❤️ .. xx
...
I so want to be strong like I once was, but the pain is so debilitating! I also suffer from migraines, and so my neck and shoulders HURT every day! And the lack of sleep...ugh!!
jenlynn818 me too. Migraines, neck, shoulder, ....and the most fun, insomnia yay :(
Can you describe your neck pain i get burning behind my neck and top and middle of shoulders
Have shared this video on facebook. The invisible pain and fatigue is the worst part and nobody can see or understand what its like
It's nice to have someone tell you that FMS is not "all in your head." FMS is real, I've had it at least 25 yrs and I wouldn't wish it on my worst enemy.
I have had it probably close to 20 years I wouldn't wish this on my worst enemy either it's a horrible disease and the chronic fatigue is so overwhelming to me and I do take the Lyrica and I take Wellbutrin and then I have other pain so I get hydrocodone for that I couldn't make it without that medication I have brought myself off of some of the stuff that they had me on cuz I thought I was taking too much and I slowly took myself off some stuff but I do have muscle relaxers that I only use a little bit of I have sleepy pills that I only use sometimes try not to but yeah not being able to sleep horrible but it's just a horrible disease that I don't wish on anyone
PAIN PAIN PAIN PAIN PAIN PAIN PAIN PAIN PAIN AND MORE PAIN! 😳
oh i have all 7 as well...
I find the fatigue is the hardest thing to explain to people.
Thank you for listing these, Toby. I too have all seven like many others here and it's unnerving sometimes how each of these can be debilitating on their own, but together...full blown nightmare. Especially during a flare up. Then, if you have multiple other health problems in addition to Fibro....well, nuff said there. Wishing painfree days to all❤️...Susanne, 51, Nashville
There are over 100 symptoms of fibromyalgia. I was in a hospital group of 8 women where we explored meditation to lower stress, yoga/ chair yoga, psychology, gym exercise with machinery. It was very helpful. I was broken in 2008 and diagnosed in hospital where I spent one week. Needed a blood transfusion as well because my platelets were too low. Since then, I have additional issues that I must live with. I try to stay positive and always pace myself as far as exerting myself. If not, one can easily overdo and be out of commission for days.
Your compassion and understanding is profound. A breath of fresh air ~ Thank You ~
What is use of compassion without any remedy
I have all 7 plus many many more. Fibromyalgia is so cruel and robs us all of our normal lives. I'm so glad I found this site, it's nice to hear how other people cope. I was diagnosed in 2011 and sometimes feel very alone. I find it hard at times to just blink, but on rare good days I go for it big time and suffer the consequences after, at least I felt like ME for a little while. I thank God every day for my husband, he is my rock and there for me every step of the way, he's the only one who see's the real me and is the only one who helps me and I am eternally grateful to him.
and then you definitely need to be eternally grateful for a good husband I've been divorced for 23 years for the last year and a half I have lived with my brother who's very active he's the pastor of our church and I could say sometimes not understanding but he's real gentle real sweet real kind and like most people just doesn't really know what to do if anything what can they do except all we want is understanding really and chronic fatigue is one of the worst things for me I do have lots and lots of pain I'm pretty tough but when you don't even feel like getting out of the bed all you want to do is sleep or at least lay down that's hard for people to understand so we're all in this together and yes I'm like you if I have a good day I go for it and I usually suffer for 2 or 3 days after
Thankyou. So few people in my life have understood what I've gone through with fibro.
I don't blame them really because it can be difficult to understand or empathise if you haven't experience of fibro however being told that it's all in my head or that I should do this or should do that has never been helpful and has added to the stress and frustrations I already felt, not to mention added shame to the mix.
I've lived with this debilitating illness for almost thirty years and have found that the medical profession aside from a doctor who joined our gp practice a couple of years ago , haven't really helped at all and in fact made things worse with their lack of knowledge and understanding of the illness.
I've tried countless modalities and so called remedies with little to no success but I'm open to looking into your programme with the hope that something will finally help me.
To those of you going through this please know you're not alone and my heart goes out to you. x
Your the first person that makes sense. You have mentioned the 7 principal symptoms that I think all fibro patients have, including myself. Other UA-camrs talk about strange symptoms that maybe overlaping with other illnesses they might have. This is frustrating to here because I can't relate. All though I know that not every one suffers the same symptoms but some of them are ridiculous. And I wish to here experiences or info that I can relate to and understand. Thank you
Thank you for understanding our lives. I also have Lupus... it's a hard life. So hard.. but people like you are what we need in this world. People who understand and are patient.
I've been diagnosed with fibromyalgia when I was 35, I'm now 63 and I have many other invisible disabilities. I've been in a wheelchair for 20 years. I'm so very thankful for it and my life has been improved with it. I've been suffering since I was a teen. I'd like to hear about Fibro in young people.
I agree with all that was mentioned, it is hard and sad to live this way, so much regret, guilt and worry.
Thank you for helping to increase awareness and addressing the actual symptoms and difficulties that being a personal diagnosed with fibromyalgia feels and deals with on a daily basis. I would also add depression to this list as I know suffering through this... if you didn't have depression before, you most certainty can expect it to come with such a misunderstood and debilitating illness.
I realized I can't really managed certain aspects of the fibromyalgia anymore. I can deal with the pain, but I can't deal with the symptoms that we usually don't talk about very often, like the blurred vision, the panic attacks, the pain in the chest (costochondritis) driving you crazy because you keep spiraling thinking that you have an issue with your heart or your lungs, creating anxiety signs, and of course when you can't breathe properly it's getting easily out of control in the anxiety area... I realized today that actually my life is entirely revolving around the fibromyalgia. I can't go anywhere without thinking about "will I be able to face it", I am sometimes to tired to do anything, I'm scared all the time, it's not a life, I just can't take that anymore ! People are saying that we have to be strong but how ? When I feel good, I overwhelm my own body by trying to do as much as I can because I know that a moment will come where I'll be back to square one ! I didn't find yet the way to deal with that, to find something that will make me stop to define myself only through the disease, just because I'm always afraid of what could happen. It's even more exhausting :/
So very sorry about all you are going through. Your life sounds exactly like mine. I also have costochondritis which I think is one of my worst symptoms. Constantly have difficulty taking a deep breath and feel as though I have an elephant sitting on my chest. The pain radiates through to my back. I have had tests done on my heart, lungs etc., I don’t get panic attacks but I have great anxiety and sometimes feel as though I’m going to die. People think I’m exaggerating. Like you my symptoms are totally wearing me down. I can hardly walk anymore and need a walker to help me. It has become so very debilitating and I am finding it very hard to cope and get through the day. I try to go swimming as often as possible (just gentle lengths of the pool) which brings me a little relief for a short time and when I’m having a really bad day, I watch comedies on tv and do deep breathing exercises. I am also fortunate to have some wonderful friends and neighbors who support me and who I can call at any time. Wishing you some pain free moments. Take care. Big hugs.❤️🇨🇦❤️🇨🇦
Feeling so alone suffering in your own prison. The confusion of it all. Its so depressing. Thanks for reminding me I'm not crazy.
My 39th birthday was on the 20th and no one believes me...my secret is spending most my life in bed away from the elements not talking to people and using my facial expressions
I've had fibro for over 20 yrs. Also have babesiosis (lymes), RA, sjogrens (which includes head sweats so severe my hair drips, dry mouth which caused my teeth to break, dry eyes,IBS, interstitial cystitis, PAIN, it's been very hard. Family has no idea and think I am a hypochondriac. I recently sold my home and moved to a new state. OMG you just mentioned feeling stuck. I haven't unpacked all of my things yet. Thank you for bringing that up you brought tears to my eyes.
As soon as you said the word guilt my eyes started to weld up, this is such a hard issue for me. Thanks for posting.
I wanna Marry this guy....he totally understands what im going through... My family says im just being a bitch... But im not... And there's nothing that helps with this pain.... Please please find us a cure... I have the worst case of fibromyalgia you can imagine... I wouldn't wish this pain on my worst enemy... Sometimes I wake up in sooooo much pain I sit in my bed and cry... Im on Lyrica now and it seems to help very little.. But at least it's some thing.. Dealing with this pain... Sometimes suicide has crossed my mind... But it's considered a sin in my religion.. I wouldn't do it... But for all of us that suffer from this.... It's not just in our heads and we are not just making it up to get attention... It's real... Very real pain... Thanks for reading this... And hopefully the drs will find a cure !!!!
Please don't Usha as long as you have access to a web you can find doctors such as this one who can give you tips and advance on how to manage your Fibro. The key is not giving up hang in there you made it this far.
Usha Sharma I understand completely. my mom and I both suffer with this disease, and I do not want to have children because of it. I mean, how can I? Family is no where to be found when your too sick to even get to the doctor or even just the store for a few groceries. I just got home from work and took two muscle relaxers, two aleeve and a pregnizone. Don't even care if I'm supposed to. I will do anything to make the pain stop!
So sorry for your pain, I understand it. I have suffered for 30 years. Get very close to God and distress as much as possible. Research natural remedies and find a good body worker and chiropractic. Walk a little daily or every 2 days. Stay away from illnesses. God bless.
Victoria, What are some of the things you use?
Betty, One thing that helped my daughter was a prescription call "low dose naltrexone". Google LDN . Learn all you can and take a half page description to your doctor. Anything more than that and he/she won't waste his time on the information.
I suffer from all 7 of these. I'm not sure if I have fibromyalgia, but have been diagnosed with CFS and chronic active EBV and CMV infections concurrently. Still, I have received very poor medical support and care. Despite my blood tests coming back showing chronic active EBV and CMV infections, my current doctor "doesn't believe" in chronic EBV/CMV! She can barely understand my bloodwork, not recognizing my extremely high antibody titres to these viruses, even though my tests show they are 10 times higher than an inactive exposure. I have been like this for years now. I also have psoriatic arthritis and several degenerative spinal conditions all contributing to the pain and inflammation.
I am so fatigued, and too sick to be my own advocate anymore. I wish someone from the medical community was on my side. All of this adds to my depression, panic and anxiety. I had so many things I wanted to do, and friends and family who wanted me to travel with them, but I'm just too fatigued all the time.
I'm sorry to hear you're suffering so badly Steven. It might be worth checking out Toby's program though. Just having the support and understanding from the community and the coaches there has been very valuable for me. There is a lot of great people there helping one another and the coaches all have recovered from being bed-bound from CFS, so they really know. I hope you get better so that you can enjoy your life more further down the road. I know it's frustrating and depressing at times but there is hope. (And I am not working for Toby or CFS help, they've just been help for me).
Siddy Sig Thank you for the encouragement.
You're welcome. We all deserve to live well and be healthy .... also you and I :)
Hey Steven - It's tough, especially on top of what you are going through! Hope you can find help you need. It is out there!
Dinky Me It means Epstein-Barr virus and cytomegalovirus. Both herpes family viruses that usually are not chronically active...they both cause symptoms of mononucleosis, which is like having the flu for years, in my case. Too bad my doctor doesn't "believe" in chronic Epstein-Barr virus even though the National Institute of Health doe, and my blood tests have shown an active infection for YEARS.
Hard to be your own advocate when you are so sick!
Thank you for the question.
I was diagnosed with fibromyalgia and ankylosing spondylitis when I was 18. I am now 25. These diseases have stolen my life from me
I suffer from Fibromyalgia EBV Cfs and shingles. I have seen every specialist probably out there it took me a year to finally be diagnosed with fibromyalgia. The doc told me I was just gonna have to deal with it for the rest of my life no help at all:/ I didn't wanna get on any of the medications because medicine doesn't react well with my body. So I have been going the natural route trying to keep the symptoms at bay as best I can. I am now seeing a alternative doctor that has got me on NES biofeedback treatments. This kind of treatment has not been around long, but at this point I will try anything. Crossing my fingers it will work!
Thank you for this. Im in the middle of trying to find what wrong. I've fought for years for answers and I'm tired of the DRs who give up and decide its mental because they cant fix me while I just get worse year by year. I just want my life back.
They definitely say its mental illness smh
I have delt with all this for years. I have never seen a video so informative. I am text book. I appear almost atlectic. No one believes or understands.
Had this for more than twenty years its now hurt bad in my hands i am very fatigued with no cure i have to struggle going out yesterday to get my eyes test it was a nice day but i knew i would pay in more pain when i got back my daughter is my carer i feel guilty she does everything for me the pain is what makes me so deppressed at time my Faith in god and my family grandkids is what keeps me holding on and fighting i am glad its more awareness is out so good
Thank you for understanding and caring enough to do this video. It is hard to face it is actually happening to you and I do miss the person I use to be. Trying to stay positive, thankful and grateful helps. There is always something to be thankful for, remember to count your blessings.
I have all of these 7 symptoms x2 especially when I have less then 8 hours of sleep.
I've had FM now for over 20 yrs. Man are they ever going to find what the hell it is? Or atleast figure a way to diagnose it & give it a proper acknowledgment. It's sucked my very soul & I feel like my life is completely over, minus the fact that I'm still here suffering. FM is a monster
You are so right!!
My doctor is looking into fibromyalgia I havnt been diagnosed yet. I'm at the point on certain days where I have to crawl to the bathroom and cant lift myself off the floor. I don't remember the last time I had a normal day. Thanks for the video. Videos like these are helping me figure out whats going on at least a small bit.
Jessi Sater did the doctors diagnose you? Yep, it’s tough..
Embarrassment, deep depression, scared, Can think suicidal thoughts,
All of these seven points are with me 24/7.
I find it frustrating that most people I know, are so negative and talk about what they can't do. I try to be around people who are more positive, and find ways of doing things they want to do. I joined a walking group. We walk as much or as little as we can. No pressure. It's definitely helped my pain, and mood, and coping mechanisms. I have weekly massage...The Bowen Technique is good for fibromyalgia.
I record thoughts on my phone, that I want to remember. As soon as I think of something, it goes out of my head. Recording helps me to have conversations, and to recall things I need to do.
I didn't go on holiday for 2 years, after I'd been diagnosed. I thought what's the point? My partner and I used to go hiking, walking for miles. We would go cycling. Then I couldn't do any of it. But then one day, I thought " I want to go on holiday, I want to explore the world, I want to do things, but how can I?"
The first short holiday we had together, was in Sicily. We hired a car, explored small areas, and when I felt tired, I went back to the hotel and rested/slept. My partner went out and explored, while I was sleeping, and he would come back with information of routes from the hotel to places of interest, and back to the hotel. This helped me to see things, without having to travel so far. So, it is possible, you just have to not worry about what you used to do before fibromyalgia, but plan ways to do things with fibromyalgia.
Good for you . I too try to stay positive. I used to love to walk and when I was first diagnosed with Fibro I started up a walking group. Unfortunately now, after living with it for 25 years my walking is very limited. I do however love to swim so try and do gentle lengths of the pool as often as possible. This is the only thing that gives me any relief. When I get down I watch comedy shows on tv, such Frasier, Cheers or Everybody Loves Raymond. Laughter is the best medicine. Gentle yoga and meditation are also helpful. I tried for many years to keep going and doing my normal activities, but sadly I am experiencing more new symptoms which are very debilitating. I am very fortunate to have great friends who support me. Recently it has been getting the better of me and my constant pain is wearing me down. I used to have good and bad days, but now I only have bad days. Hope you never get to my stage. Keep going and having as much fun as you can while you can. Hugs,❤️🇨🇦❤️🇨🇦
I always tell people especially now during the winter where the flu is rampant that Fibromyalgia feels like your worst flu times 10. The worst part about it is knowing it will never go away and that it’s your “norm” for the rest of your life. Most people I would mention this too while they have the flu said oh screw that just kill me now in that case. The worst flu or getting hit by a car is the closest example I can give to a person not suffering from chronic pain to understand. You have to catch them when they’re hurting though because humans have a natural defense mechanism that allows us to sort of forget the intensity of pain we went through once we feel better. Just try telling someone with the flu that this will last forever and ever and everrrrrrr.
Thank you for making this video! I have been having chronic neck and back pain for 2 years. After a series of MRI'S, X rays, blood tests with results coming back normal was very frustrating. In December 2017, I was referred to a rheumotologist. He diagnosed me with Fibromyalgia. My doctor gave me 3 types of medications to cope with the pain since the diagnosis. The last 2 medications that I had taken, Cymbalta and Lyrica, sent me to the ER twice and one over night stay at the hospital . I am still searching for a way to be able to live with the pain, medicine free. Which by the way was my first goal to begin with but my rheumotologist wasn't hearing me. I was desperate to be pain free so I tried the medications he recommend. I am currently being wheened off of Cymbalta( thanks to Jewish Barnes hospital). I will be seeking help from a pain management doctor soon. I will continue to follow your videos and check out your website. Thanks again for making this video!! To fellow Fibromyalgia warriors, I am sending lots of hugs and love. WE WILL OVERCOME THIS SILENT ILLNESS!!!
Why did cymbalta and lyrica send u to er ive taken both they dont work im scared to continue taking em and bad side effects
@@westsidekasper4860 Hello! To start with, the only words at the moment I can think of are , " I am sorry to hear you are in pain". My doctor didn't ween me off of Cymbalta before starts Lyrica. I just quit cold turkey and then started on some new meds. My body didn't react well to that. Since then my diagnosis has changed. I pray you find relief soon. Spiritual prayer meditation often helps me. God bless and hugs💜
@@josephinecrane478 hows ur neck pain now? Mine went from 4 months of unbearable to 2 months of annoying aching now it just hurts to turn my neck to the right buu my slightly dislocated tmj dislocated my whole shoulders hips and legs. N yes prayers work for me they reassure me that i will be strong enough for what ever comes my way often times i pray for death if not healing but we all know thats too good
@@josephinecrane478 hows ur neck pain now? Mine went from 4 months of unbearable to 2 months of annoying aching now it just hurts to turn my neck to the right buu my slightly dislocated tmj dislocated my whole shoulders hips and legs. N yes prayers work for me they reassure me that i will be strong enough for what ever comes my way often times i pray for death if not healing but we all know thats too good
@@westsidekasper4860 To be honest the pain doesn't compare to the rest of my nerve pain. And my other nerve issues. I just keep smiling and know God's got me. I'm not perfect some days when I'm bed ridden I get really down like you mentioned but I know in my heart this pain is temporary. So I focus on forever, Our Heavenly Father. Keep smiling dear beautiful friend 🤗! I pray you have more good days!💜🦋🌻
Thank you so much. Only if my doc could watch this video also the E.R. docs.They do not take this disease seriously at all. I live my life daily n chronic pain. I'm so tired n weary of it all. N 2 weeks time I've been 2 different medications. Btw all antidepressants that don't work n make me feel even worst. Praying for all the suffers out there🙏
I feel guilty so right. I feel guilty because I have suffered and not been able to work for years, and few people understand, what we are going through, even Doctors. People and medics, still feel it's all in the mind. No conclusive research. I worry because I can't do what I want to, I'm getting older and seem to be getting worse. Still not married no kids.Something I get really depressed about.The cruel thing is, Every day is different. some days I can get out of bed. others not, but every day is the same. my legs feel as they are walking through mud, so painful and heavy. My mind is always foggy can't think straight. and feel so unwell. When I was working. I always pushed myself too far. I overworked. my pushed body and mind couldn't cope. I was a workalcoholic.trying to do three jobs at once. I have severe depression and feel so isolated. It pains me to think, many others feel like this to, my heart goes out to them. I hope talking and discussion may help us all, and convince the medics, we are really genuinely ill, and they do something. I had to educate Doctors before, as, in the early nineties, little was know of' Body Dysmorphia'. another condition that isolates me. Michael Jackson had it too. Don't give up keep on in there. you are far from alone. luckily, there are signs that the medics are just starting to take this terrible condition seriously. I pray they will find a cure soon, so we can start to live again.
Thank you for this great video. I have had Fibromyalgia for over 30 years and I get worse every year. My nephew and his family are coming for a visit from England (I live in Canada). They will be staying t a hotel, but they want to do a lot of activities with me. I have had to tell them that I am limited in my walking and can’t do a lot of things. I have been trying to organize a few things for them and I got myself so totally stressed that I almost had a breakdown. I just can’t get my head organized enough to plan a few things. Also, not being understood is another thing I deal with all the time. I have a wonderful son who calls me every day and who I love very much, but he constantly makes comments that I don’t try hard enough and I could do a lot more if I really tried harder. He wanted me to go to Florida with him and his family this February for a month. They were driving and I would have to fly by myself. I told him I could t handle my luggage and the airport. Also if it was too hot there I wouldn’t be able to handle it. I also can’t handle too much confusion being around so many people every day. He just doesn’t understand and I feel like he judges me all the time. Don’t know how to make him understand. The last two months have been a living hell for me as I have in a constant flare with pain in every part of my body. He lives an hour away so doesn’t see me all the time and even when he does, he always says I look good. It’s just so difficult trying to get people to understand what we are going through. I really appreciate your video. Thank you. Hugs to my fellow sufferers❤️🇨🇦❤️🇨🇦
Thank you for sharing Toby! Do you recommend (low dose naltrexone) LDN as a help for fibro/auto immune conditions?
Thank you for sharing your video! I do feel so much that these 7 points you bring up are absolutely true!
This guy nailed it. Thank you so much for doing this video
I thought I was doing quite well, but I actually aren't lately, devastated
Hate that some people don't believe what I deal with daily
You really understand, Toby. Thank you.
One huge painful truth is doctors are not trained in pain management. My original doc swore I couldn't have fibro because I'm a man. Looking at all the commenters it's easy to think only women get it. Then another truth is almost every doc I've been to swears they will fix me! Opiates only work for awhile and you end up addicted. Tramadol and Gabapentin seem to work OK now. Good luck and God be with you ladies.
I have watched so many videos on fybro but no one is speaking about feeling off-balanced am I the only one feeling like this
Loss of my old self, loss of strength, loss of good sleep. Something as simple as holding a book. My hands are shot. Hurts to much. Have to wear hand braces when I drive. Energy
I love you for this.
Thank you ! people l know just can't comprehend how it effects every part of your daily life, l don't feel as crazy and alone .
Constant pain uuuuggghhh! Yes. My doctor diagnosis me yesterday.
I’m in a horrible flare right now it’s been so bad for so long it’s ouch everywhere
Im1-7 I hurt from morning to night
I have had this for 8 years. Very frustrated. Lack of understanding is HUGE and brain fog not to mention just overall fatigue, insomnia and widespread pain and discomfort.
Your absolutely correct! WOW!
Hi Toby I think the hardest thing people have to cope with and it’s so depressing is that chronic fatigue and fibromyalgia isn’t taken seriously and you’re almost Christmas like a naughty child
One thing that bothers me with having fibromyalgia is there is tons to do around the house and I can’t do anything because of pain -I miss my old self b4 2011
Add to this side effects of meds which exacerbate all these symptoms, trying to separate med effects from FMS symptoms.....then the mental stress when a med doesn't work and you have to spend weeks weaning off it before you can try something else, after 5 or 6 times its ENOUGH ALREADY!!
Spot on Sir!
Very true pain.and isolation it takes alot to deal.with this.it wears you down
I have all 7 n most frustrating part is when you are told all this is in your head n not to mention it again by family n your GP
I'm sorry, but fibro has left me with a severe light sensitivity, and that light bulb over your right (to me) shoulder is causing me to turn away.
Hi, I got diagnosed 9 years ago and didn't know as I still don't know what it is and why I have this, but feel I've had it my whole life. I live alone, have no support or friends.
I can tell you one frustration, waiting over a year to be placed in a pain clinic to find out that absolutely nobody that works there and assumes to know how to help you have ever experienced chronic pain!!!!!! Like having me teach someone to golf!!!! Such a joke, so sick of it. Been dealing with chronic pain since 1997 and I am worn out just trying to get help.
You should mention as well economic surviving problems for those of us unable to work anymore .
I'm from Spain and here is very difficult to get a disabling pension.
Thank you very much for your vídeos.
Accupunture is helping me ... pl try it
Wish I could like this 1000 times
OMG, This is so true... Create video. Ty
I quit derry and gluten and all pain gone . I was in pain in all over my body for 6 month .
Also tofu for me
I've had this disease since early childhood. It waxes and wanes, but it's a rarity when I'm pain free.
I'm glad that you tried going gluten and dairy-free. After suffering 25 years and dragging myself out of bed I found a chiropractor that changed my diet. ZERO sugar, zero wheat, zero pasta, zero bread and dropped Lyrica (saved me $250/month in meds). I wish everyone with FMS and CFS/ME would try dropping the American and Mediterranean diets and see for yourselves that will be the only cure.
He had me until he began talking about a cure and even one person “recovering “ and “Hang in there” 😑
I was diagnoised on June 2nd of this year. I been trying to cope and as I find more information i am planning on making more of my own videos. Please check them out if you want.
For about a year now, I've had pains throughout my body. First started out in my leg, like a stabbing/deep pain that would come and go, sometimes unbearable and sometimes barely noticeable. It was around my calve and shin area only in the one leg. Since then I've had the same type of pain in my hip, in my other leg, my feet, and sometimes in my arms and hands. I went to the doctor a few times, and even had xrays on my leg, but nothing showed up. I still have the pain just about everyday, sometimes it's not too bad, but other days it comes in waves where it hurts so bad it's all I can think about. I'm 16 by the way. Does this sound like Fibromyalgia, and if not, do you have any other ideas? (also, I recently found out my grandma has fibromyalgia, but not sure her pain is like mine.)
L4MB0 yes I’ve have the the same pain
They think there is a heredity component it sounds like fibro, traveling around your body. Mine mostly in my right thigh, it's the worse area, but I get deep aches and stinging burning pain everything..like electric shocks. Also rib pains, like a sword between my ribs, feel it from front to back. The fatigue flare ups, brutal! Sleep ruined. Legs and arms feel like I'm carrying rocks inside. This is during flare ups. Other times, it's toned down, but numbness in my thigh remains until next major flare up, then it turns back into extreme pain in nerves. Try to stay calm, reduce stresses as much as possible. I use a heating pad and Voltaren and deep massage in areas that are worse and I sleep w naps more often. Sorry you are so young to have this rotten condition. I pray you find relief.
@@traceytansley1659 I have found out it's related to Asperger's ADHD hypomobility OCD for which I have all CFS prior.had to find it myself has sod as a child labels etc tags early fybromyalgia
Me as well i've been suffering since childhood and still im 56 now.
Pain,exhaustion brain fog dry eyes ............
هل ممكن تكون ترجمة بالعربي وخاصة أنا مريضة فيبرومياليجيا
Loneliness, guilt, all the rest that was mentioned and now I have costochondritis and I have no life .
Thank you for talking i must say that it does isolate people tony i am one of them and because its invisable people judge and it does hurt i worked fulltime i got sick at work then i could not walk for three months its god my late mother my family help me to this i cant cry no more tony my.years hsrden to all the pain i am.endureing plus no sleep makeup is my mask my daughter puts it on so nice my.eyes are what she tries and make look brighter its hard i need to rest and i escape with music its my painkiller it helps medication helps.but after long taking it stops not as effective but the god i serve comforts me he is able and i put all my trust in god relationship are not the way it should be too much options so a good woman gets left behind but a smart woman never faces the ground me i never give up on me i love myself first god bless you tony ❤
It's very frustrating explaining to co-workers, why I'm in pain! They don't know what Fibromyalgia is.
2010 i felt strange i told my daughter dont move stay home she felt its just the flu we will be ok i said no this feels scary she went came back found dead in her room i sat for 6 months looking at a tree i did not move to live i have fibo and a broken heart
Nodding my head.
Im always in pain jaw neck shoulders back legs hands burning stabbing pain constant even my butt burns if i sit for too long buening mounth and lips is horrible but the moat debilitating is the emotional pain
I had been diagnosed with fibromyalgia at one time when I was asking about chronic fatigue. I didn't know or believe it was an issue on its own tho? i had thought it was a side effect of all my other health issues (most of which are autoimmune). I hope noone takes my assumptions wrong. But is it a "side effect" of deeper issues, or is it a 'disease" n its own? Not trying to sound ugly at all, just confused at to what it actually is. That Dr didn't seem to know much, so I shrugged it off. blessings
Jen M As far as I understand it's a syndrome. (FMS). I think that implies its a cluster of symptoms, but I don't know beyond that. I saw on another video that people with fibromyalgia are likely to have autoimmune diseases as well. I thought I just had arthritis and was referred to a rheumatologist, but he eventually diagnosed fibromyalgia as well. I didn't know what it was at the time, but I had so many of the symptoms that I thought were all separate issues.
Karen ••• Thankyou so much for your answer. And I am so sorry you have been thru all that. Blessings.
:-)
It is definitely a disease/condition that stands by itself and not at all a side effect of anything else.
Dr. Rodger Murphrey calls it the flu from hell. It just keeps going on 24/7. My youngest daughter had it hit her full blown when she was about 12 or 13. We have tried countless remedies. She is a very determined girl and can't say no even though there are times that her whole body is frozen with pain and she can't move. As soon as it releases she is back at it. No, the pain doesn't go away but she can move and she does.
Does stomach ache burn having bloated feeling for hours is part of fibromyalgia or Rheumatoid
Yes, it can be.
Hi,I have had Fibro for yrs. Off & on.Stress does not help.Drastic change of weather makes it worst
For me.I am in New England the Summers are so hot I suffer more at that time.I deal w/ the 6 #
That is on your chart.To share w/ others = U Tube Binaurel Beats helps me lower pain & burning.
Also U Tube w/ Dr. Allen Mandel’s tapping of the trigger points also is a big help.
I came across Your video just now.I can not wait to see & hear more.Thank You ,Thank You.
I hope that you do not have it.You certenly know alll the symptoms .Like I mentioned ,I do
Have burning also.when all effect me all together ,I can not do much but pray .Deep breathing
Helps,muscle relaxing starting from feet to top of head is helpful.Some use heat I prefer
Ice.I am looking foward to hearing & learning more from You.Thank You ,Thank You.from Ma.
There is one more problem that I experience dealing with doctors, nurses, and all manner of medical personnel. I have such anger for the many rude remarks. I have three of them blow up at me . They all were screaming at me saying "There is no such thing as fibromyalgia." That comment is always followed by pill seeker, lazy, just regular aches & pains, many of you are getting pain pills ans selling them....and on and on. Now I do not even mention the "F" word when dealing with the medical profession. Yes, we now have a new "F" word.
Diagnosed 1999. So very misunderstood illness.
1996 for me.
The guilt not being the mom my kids deserve I had mono at some point as a kid I got married and had a baby at 15, when I was 18 I had my 2nd daughter and I woke up to find she had passed away while I was sleeping right next to me. I hadn't been feeling good felt like I had the flu I was breastfeeding her and she just passed 6 pounds so I didn't half to wake her up to eat every 3 and a half hrs. My insomnia is so bad even 21 years later and having fibromyalgia and CFS well I have a very shitty quality of life.
Lack of understanding
It helps to show family as family dont get it 😢