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 Autoimmune Diseases group.

Hi Darlia,
This has been an on-going discussion among the medical community. I’ve suffered from Fibro for over 30 years!

There are still some old-fashioned docs who don’t believe this even exists. There are people out there who are disabled from this when they are inflamed. When I tried to get a disability policy, I was told this is an autoimmune disorder and could not get coverage. Funny, people with heart disease, diabetes and cancer can (although they pay through the nose), but I couldn’t.

ronnie

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Thanks for the reply, Ronnie. I really understand because I\'ve had it must of my life too. Diagnosed in early 80\'s, but had symptoms for like 5+ years before that. I\'ve read where the jury is out on if it\'s autoimmune or not, yet.. but I have many other actual autoimmune diseases so I Believe this disorder that we call Fibromyalgia is a complication that comes as a result of having autoimmune diseases. When I post on the Fibromyalgia Mastery onFB that it is autoimmune, several people, one specifically, freaked out on how it\'s not an autoimmune diseases but a neurological one!. Well, I have peripheral neuropathy and that\'s neurological plus the cause is having a rare antibody that is also neurological!. So I appreciate your imput!
Darlia

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@darlia

Thanks for the reply, Ronnie. I really understand because I\'ve had it must of my life too. Diagnosed in early 80\'s, but had symptoms for like 5+ years before that. I\'ve read where the jury is out on if it\'s autoimmune or not, yet.. but I have many other actual autoimmune diseases so I Believe this disorder that we call Fibromyalgia is a complication that comes as a result of having autoimmune diseases. When I post on the Fibromyalgia Mastery onFB that it is autoimmune, several people, one specifically, freaked out on how it\'s not an autoimmune diseases but a neurological one!. Well, I have peripheral neuropathy and that\'s neurological plus the cause is having a rare antibody that is also neurological!. So I appreciate your imput!
Darlia

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Hi Darlia

You are very welcome.

I believe this will continue to be an on-going debate until the medical community can make up its mind. Problem is, I really don\'t think they care. Just think, they have known about this condition for decades and they still haven\'t made up any test for confirmation. Diagnosis, as you know, is a matter of elimination and symptoms. In addition, as you research and read other posts, you see that the treatments vary, too.

For me, what I did all those years ago helped. Low dose anti-depressants to get into deep, restorative sleep, exercise, weight loss, therapeutic massage and chiropractics worked for me. Insurance companies told me it was auto-immune and would not insure me, that I would have to go to an insurance company that insures high risk customers and they charge a fortune.

By the way, it was women who first complained about this mysterious \'disease\' and they were told, as they have for other conditions, there was nothing wrong and it was all in their head.

So, in short, I believe we need to do what we can to relieve the symptoms and not exasperate them.

Good luck to you and us all!!!!
ronnie

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@darlia

Thanks for the reply, Ronnie. I really understand because I\'ve had it must of my life too. Diagnosed in early 80\'s, but had symptoms for like 5+ years before that. I\'ve read where the jury is out on if it\'s autoimmune or not, yet.. but I have many other actual autoimmune diseases so I Believe this disorder that we call Fibromyalgia is a complication that comes as a result of having autoimmune diseases. When I post on the Fibromyalgia Mastery onFB that it is autoimmune, several people, one specifically, freaked out on how it\'s not an autoimmune diseases but a neurological one!. Well, I have peripheral neuropathy and that\'s neurological plus the cause is having a rare antibody that is also neurological!. So I appreciate your imput!
Darlia

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I completely agree! And I went through the same…they all told me it was my imagination too!
Thank you for the encouragement. Stay safe!
Darlia

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It hurts way down deep when people don't believe me. I doubt Drs would give us chemicals unless they are sure we are ill. It is so hard to convince my son. My daughter just thinks I am weak and should drop all drugs and work it off with exercise and take fake drugs. Mind you I am 75 76 in two months. The drugs allow me to live. I have she'd a lot of tears

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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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According to recent research at King's College in London it's auto-immune indeed: https://www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems
However, it can also be detected in the brain: https://pubmed.ncbi.nlm.nih.gov/32721793/ (research in Ghent, Belgium). I thin both of these studies show without a doubt that Fibromyalgia is real. Copy the links and show them to disbelieving doctors. If they then accuse you of taking advice from Dr Google, tell them that both these websites are made for professionals in the medical field. Don't back off- it's your health!

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https://www.mayoclinic.org/diseases-https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780
Fibromyalgia is very real as many of us know.
We should no longer hear that it’s all in our heads, hormones or whatever.
Doctors today should know that and be able to refer a patient for appropriate treatment. Rheumatologists are the most knowledgeable- or should be.
Check the link above to Mayo Clinic’s information.
It definitely is genetic. In my family my mother had it, I have it as well as my sister.
One of my daughters was diagnosed at 15, my son at 10 and my oldest daughter,41, is being worked up now.
It is definitely an invisible illness that people around us don’t understand.
However, there are ways to learn to live with it through physical therapy, exercise, medication and psychological therapy.

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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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@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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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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@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 understand your frustration. My doctor told me that none of the rheumatologists in reno deal with fibromyalgia. Doctors act so perplexed when they do a procedure on me and they tell me it won’t hurt but it’s excruciating. For example yesterday, they removed my big toenail. The shots made me want to die it was so painful. Gabapentin is all they give me. Sometimes I don’t hurt much at all, usually when I don’t eat for days I feel better. But my mental state is a problem. Family members don’t understand and that’s hard for me.

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@shellmats

I understand your frustration. My doctor told me that none of the rheumatologists in reno deal with fibromyalgia. Doctors act so perplexed when they do a procedure on me and they tell me it won’t hurt but it’s excruciating. For example yesterday, they removed my big toenail. The shots made me want to die it was so painful. Gabapentin is all they give me. Sometimes I don’t hurt much at all, usually when I don’t eat for days I feel better. But my mental state is a problem. Family members don’t understand and that’s hard for me.

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Hello @shellmats, Welcome to Connect. It does make you wonder when the treatment sometimes brings more pain than the original problem. You mentioned that sometimes you don't hurt at all and it is usually when you don't eat for days that you feel better. I know that it can be hard when your family members don't understand what you are going through. That can definitely cause you more stress. Do you think some of your symptoms might be food related?

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