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.

@becsbuddy

@jude69 You certainly sound fed up and frustrated! I think i would be, too. Has your primary care doctor had any thought on this or made any referrals to specialists for you? Are you near a regional medical center or a university medical center? Make a list of your main problems/symptoms and then call these hospitals. Ask if they have a clinic or doctor for people with hard to diagnose problems. Will you do this and then post what you’ve learned?

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@jude69 , it’s been awhile and I haven’t heard from you. You sounded so sad and i worry about you. Have you been able to get any help from your doctor?

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No it's not. I've have it since being diagnosed in 1984, and a day doesn't go by where it doesn't hurt. But I have always ignored it because I have other problems, worse issues like ms, sjogrens which have left me with 5 teeth & my rheumatologist has made it my primary disease. This because sjogrens can rupture your organs. Also 4 rare diseases.
But all my life my husband thought I was complaining to get attention. When I had bronchitis so bad & was coughing awful & the pain he yelled at me. Turned out a later MRI for something else showed 2 cracked ribs. So this is what I had to go thru with him. Until around 1988 he saw a documentary on fibro & he was begging me to watch, I said no I already knew everything. So he calls me over with tears & apologizing for all those years, he never knew. Too little, too late. That's the problem with these type of syndromes. So I always blamed everything on the ms, when I knew it was the fibro.

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@anniemaggie

No it's not. I've have it since being diagnosed in 1984, and a day doesn't go by where it doesn't hurt. But I have always ignored it because I have other problems, worse issues like ms, sjogrens which have left me with 5 teeth & my rheumatologist has made it my primary disease. This because sjogrens can rupture your organs. Also 4 rare diseases.
But all my life my husband thought I was complaining to get attention. When I had bronchitis so bad & was coughing awful & the pain he yelled at me. Turned out a later MRI for something else showed 2 cracked ribs. So this is what I had to go thru with him. Until around 1988 he saw a documentary on fibro & he was begging me to watch, I said no I already knew everything. So he calls me over with tears & apologizing for all those years, he never knew. Too little, too late. That's the problem with these type of syndromes. So I always blamed everything on the ms, when I knew it was the fibro.

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@anniemaggie What a difficult time you have had. Are you able to talk about this with anyone locally? It must be so hard to keep it all in. Do you think your husband would go with you?
Are any of your autoimmune diseases under control? I’m hoping that you’ve found a good doctor. Again, would your husband accompany you to a doctor appointment?

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@anniemaggie

No it's not. I've have it since being diagnosed in 1984, and a day doesn't go by where it doesn't hurt. But I have always ignored it because I have other problems, worse issues like ms, sjogrens which have left me with 5 teeth & my rheumatologist has made it my primary disease. This because sjogrens can rupture your organs. Also 4 rare diseases.
But all my life my husband thought I was complaining to get attention. When I had bronchitis so bad & was coughing awful & the pain he yelled at me. Turned out a later MRI for something else showed 2 cracked ribs. So this is what I had to go thru with him. Until around 1988 he saw a documentary on fibro & he was begging me to watch, I said no I already knew everything. So he calls me over with tears & apologizing for all those years, he never knew. Too little, too late. That's the problem with these type of syndromes. So I always blamed everything on the ms, when I knew it was the fibro.

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@anniemaggie - I have an idea of what you have been going through with your husband.
In recent years I have had a lot of GI problems, most related to autoimmune illness. I have had Fibromyalgia for years too.
It is hard when nobody understands what your life is like- daily pain or discomfort- maybe one or two “ normal “ days a year…
Even my adult children thought I was just whining.
Part of my GI illness was Sjögren’s like symptoms - dry mouth and eyes. My upper incisors became see-through and I have now crowns hiding and protecting them.
By the way- after treatment with immunosuppressive meds, my GI symptoms improved so much and I was producing saliva again- drooling actually now.
You are not alone.

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@becsbuddy

@anniemaggie What a difficult time you have had. Are you able to talk about this with anyone locally? It must be so hard to keep it all in. Do you think your husband would go with you?
Are any of your autoimmune diseases under control? I’m hoping that you’ve found a good doctor. Again, would your husband accompany you to a doctor appointment?

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He died in 1988. The fibro isn't an issue, its all the other things like ms, mgus labs twice yearly with the cancer dr., sjogrens, ehlers-danlos(hyper mobile not genetic) etc. Really? I find it intersting, but getting tired of all the problems. Waiting for foot surgery. So I have so many problems, & I don't complain, & not depressed. Lot of people can't handle fibro, not sure why, Drs see my chart they about die.

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@anniemaggie

He died in 1988. The fibro isn't an issue, its all the other things like ms, mgus labs twice yearly with the cancer dr., sjogrens, ehlers-danlos(hyper mobile not genetic) etc. Really? I find it intersting, but getting tired of all the problems. Waiting for foot surgery. So I have so many problems, & I don't complain, & not depressed. Lot of people can't handle fibro, not sure why, Drs see my chart they about die.

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It was always bad on my upper arms it felt like you hit them on a cabinet door, my husband couldn't hug me. I had to ignore it, because life goes on & something else worse showed up. I had a couple seizures before covid, I had kidney disease with abscess & sepsis, I fell the seizures wiped out all my grammar, slowly coming back, spelling bad. I have 4 autoimmune's. I have lupus, but it has never been active. I tested positive 3 times for an anti smith, in the mid 90's. Dr said it was not active cause all tests since have been negative. The other anti tests were negative. I had the butterfly rash.

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@becsbuddy

@nana75165 How kind of your doctor to send you the link on fibromyalgia. And that you had a great experience at Mayo! Did you learn anything that you could pass on?
Do you think we could also have the link for this group? It would be so helpful!

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Here’s the link that my Mayo Rheumatologist sent me for the eLearning on Fibromyalgia:
https://mccmscontent.mayo.edu/PatientEducation/fibromyalgia/content/index.html
I found the explanation/analogy on Central Sensitization very interesting! I was also happy to hear that I’ve been on the right track the last year with diet and exercise to give my body a chance to fight back!

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@nana75165 Thank you for the link to the eLearning on fibromyalgia. I’ll try to watch it this evening! And i know that many members are also going to watch it.
And did you know that a member @rwinney recently completed the 3-week central sensitization program . I’m hoping she can tell you more about it

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@nana75165

Here’s the link that my Mayo Rheumatologist sent me for the eLearning on Fibromyalgia:
https://mccmscontent.mayo.edu/PatientEducation/fibromyalgia/content/index.html
I found the explanation/analogy on Central Sensitization very interesting! I was also happy to hear that I’ve been on the right track the last year with diet and exercise to give my body a chance to fight back!

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I see you posted this a few years ago but I am new to the discussion boards and stumbled across it in my searches for information on fibromyalgia and how it might be connected to autonomic dysfunction (which I have been diagnosed with). I clicked your link and was fascinated and relieved to see how all of this could be connected. I am going to look for more Mayo patient education courses as this was very, very user-friendly and simple to understand. It will help me explain it to others who question my disease. Anyway, my point here is ---thank you for posting this, it has made a difference for me.

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Pain as an adolescent, they called it growing pains. 2003 diagnosed with Fibromyalgia but never tested me for anything else.
No one believed it was a real disorder then, now? Add in some Osteoarthritis and some other weird symptoms. In 2022, a rash on my face and body went crazy. Lupus they said . Have I had it all along? Maybe. My rheumatologist does believe in Fibromyalgia. Uses steroid injections in my hips which seem to help a little. Lupus not showing now, remission? Who knows. The pain never goes away. I just cope better now and use vitamins, cannabis, other to maintain my active lifestyle. ❤️

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