Fibromyalgia..Is It an autoimmune disease?

Posted by Darlia @darlia, Feb 13, 2018

Hi all! I have Fibro. I also have many autoimmune diseases. I am being challenged by my comment to a FB discussion on Fibromyalgia about whether or not it is an autoimmune diseases.. any info appreciated! Thank you and ..just keep swimming.. just keep swimming!
Darlia

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@trudyv1954

I understand exactly how you feel. It is so hard when your friends and family have all kinds of suggestions for you like you need to go out more, exercise more, eat a healthier diet,…. (Like I haven’t already tried all these things but all it did was make me in more pain, more depressed and not feeling understood. We just have to not listen to others who make us feel like we are just looking for sympathy.

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I could have written your response myself. I also have thyroid disease and I'm back up to the weight I was 30 years ago. All the doctor says is "exercise". I can't, I hurt so bad. I ready to give up.

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Yes, I have it along with 2 other autoimmune diseases.

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I wondered about that too. I also have Sjogren's disease which is for sure autoimmune. Pain is constant but life goes on.

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@jude69

I am new to this site but it is very helpful and insightful. I am at the point of not knowing where to turn for help and like a lot of you, I do not get any sympathy from anyone. Not that I am asking for it particularly, but I have lost a lot of friends because I am just not able to join them for drinks or go to dinner, etc. As my day progresses I get worse and the pain in my chest is really bad by afternoon. I have to go to bed and lie with a heating pad on to make it feel better. I just had a stent put in and the cardiologist assured me that it is not my heart so that was a relief. However, I just wish there was something that they could give me that would not cause numerous side effects. I would like to hear what others are taking and how the medication is affecting them. Thank you for listening. I look forward to your comments. I also have shed too many tears !!

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Hello Jude69,
I have had fibro for 18 years since I was out of the military. I have been given many prescriptions, but the one that works best is deluxatine. No weird side effects, no drowsiness, and fully aware without the pain. I still get random pains cause it's only getting worse. Hopefully I will not get worse than I already am. Some days I cannot wake up and I feel I could sleep all day. Waking up is harder as I get older. I use to be very active, but it's getting tougher. I pray you find resolution in this mysterious but completely invisible disease. Only we can know the difference of how hard it is to do just simple tasks. Sincerely, Cat

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I just started reading Mayo Clinic Guide to Fibromyalgia. I've only read 4 chapters so far but it seems like it has good info. Says in there Fibro is NOT an autoimmune condition.

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@linda2114

I first noticed joint pain and cracking and popping in my joints when I was an adolescent. I have been trying to get a definitive diagnosis on and off for the last 40 years. I've had multiple blood tests for everything, bone scans MRI'S , CAT scans ect.... When they can't figure it out , they lump you into the fibromyalgia category. Not to say that it isn't a real disease I don't know, but neither do they.!!! Doctors are quicker to say fibromyalgia than they are lupus or juvenile arthritis, or MS or I could go on and on. The problem is for a lot of autoimmune disorders there is no definitive tests to say what is wrong with you. And even if you were tested for psoriatic arthritis and blood work comes back negative, it could be a false negative. Not everyone is textbook, there is a small percentage of people that don't fit what they were taught in medical school... I've even had some genetic testing done, because my daughter also has this disorder, and developed it around the same time I did .(puberty). It's very frustrating to know that the medical profession considers it insignificant or unexplainable and give up on you. At this point , whatever is wrong with me I know that it's too late for any type of autoimmune therapy or physical relief from the pain. But I worry about my daughter, my grandchildren and future generations in my family. I have been to neurologist orthopedics rheumatologist geneticists I'm about ready to give up.

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I am 75, was fibro diagnosed in early thirties. My dr, who’s now deceased, told me there are a myriad of connective tissue diseases that mimic each other. He felt in time I’d have enough symptoms to make a clear diagnosis, until then, he diagnosed me with fibromyalgia. He thought chronic fatigue was a quack diagnosis.

Forty years have passed and I had another full battery of tests because the symptoms of muscle stiffness - relieved with rest - seemed different. They did find idiopathic peripheral neuropathy.

I have never had the energy others have and they now have a name for the flu-like muscle aches after exercising: post-exertion malaise. It’s frustrating when I’m told exercising will make me feel better. Exercising makes me sick.

I now have bone on bone OA in one knee and am not sure knee replacement surgery is right for me.

I am independent, take muscle relaxers and Tylenol as needed, but knee is making it difficult to walk. Tired all the time. Not terribly social, I am comfortable being at home and getting out daily to go to a store just to stroll and use my legs. About 4K steps per day.

I do think fibro is autoimmune, caused by virus. I had severe stiffness in my spine and legs when first diagnosed - a coworker I worked in close proximity was diagnosed the previous year and another close co-worker was also diagnosed.

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@jakefix82

I am 75, was fibro diagnosed in early thirties. My dr, who’s now deceased, told me there are a myriad of connective tissue diseases that mimic each other. He felt in time I’d have enough symptoms to make a clear diagnosis, until then, he diagnosed me with fibromyalgia. He thought chronic fatigue was a quack diagnosis.

Forty years have passed and I had another full battery of tests because the symptoms of muscle stiffness - relieved with rest - seemed different. They did find idiopathic peripheral neuropathy.

I have never had the energy others have and they now have a name for the flu-like muscle aches after exercising: post-exertion malaise. It’s frustrating when I’m told exercising will make me feel better. Exercising makes me sick.

I now have bone on bone OA in one knee and am not sure knee replacement surgery is right for me.

I am independent, take muscle relaxers and Tylenol as needed, but knee is making it difficult to walk. Tired all the time. Not terribly social, I am comfortable being at home and getting out daily to go to a store just to stroll and use my legs. About 4K steps per day.

I do think fibro is autoimmune, caused by virus. I had severe stiffness in my spine and legs when first diagnosed - a coworker I worked in close proximity was diagnosed the previous year and another close co-worker was also diagnosed.

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@jakefix82 You might be interested in the discussion group about knee replacement. Here you can get the whole picture of knee replacement and the recovery time.
https://connect.mayoclinic.org/group/joint-replacements/ You want to be sufficiently informed to make a good, informed consent. Let’s hope some members will join this discussion soon!
Is there anything about knee replacement that worries you?

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@catmando22

Hello Jude69,
I have had fibro for 18 years since I was out of the military. I have been given many prescriptions, but the one that works best is deluxatine. No weird side effects, no drowsiness, and fully aware without the pain. I still get random pains cause it's only getting worse. Hopefully I will not get worse than I already am. Some days I cannot wake up and I feel I could sleep all day. Waking up is harder as I get older. I use to be very active, but it's getting tougher. I pray you find resolution in this mysterious but completely invisible disease. Only we can know the difference of how hard it is to do just simple tasks. Sincerely, Cat

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You’re describing me every morning……I am 91 yrs and have trying to figure out how long I have had Fibro?? Interesting to know you have medication…my Docs give me nothing except painkiller ….gonna look into Deluxatine……Take care,and God Bless….!!!

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@becsbuddy

@jakefix82 You might be interested in the discussion group about knee replacement. Here you can get the whole picture of knee replacement and the recovery time.
https://connect.mayoclinic.org/group/joint-replacements/ You want to be sufficiently informed to make a good, informed consent. Let’s hope some members will join this discussion soon!
Is there anything about knee replacement that worries you?

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I also have fibro and bone on bone knee. I'm currently fighting breast cancer so knee replacement is on hold. But surgical post op pain is really awful. I had breast and axillary surgery 2.5 months ago and am still in a lot of pain. All the info I could find says once a pain pathway is formed (for fibro sufferers) it's really hard to overcome. I'm lucky to have a good care team.

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@laurieb15

I also have fibro and bone on bone knee. I'm currently fighting breast cancer so knee replacement is on hold. But surgical post op pain is really awful. I had breast and axillary surgery 2.5 months ago and am still in a lot of pain. All the info I could find says once a pain pathway is formed (for fibro sufferers) it's really hard to overcome. I'm lucky to have a good care team.

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Thanks…that’s helpful. I’ve read where some orthopedists refuse to do knee surgery on fibro folks because the outcomes are “iffy”. Then I’ve read one report that says the opposite. After my primary care Dr died, I tried to find a new one with MDVIP, a nationwide concierge network (the extra attention was worth the money). However, the only MDVIP dr taking patients in my area refused anyone with a fibro diagnosis! I’ve just not had luck finding someone who gets this issue. You’re in my thoughts as you fight breast cancer - that’s worrisome for sure. I had melanoma diagnosed last year, but caught it in time. Had surgery, took a golf ball size chunk from my leg, but good cure rate. I do have a great dermatologist - she, too, had breast cancer a few years back, but is back doing everything she once did.

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