Fibromyalgia..Is It an autoimmune disease?

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.

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.

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.

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?

I think sugar/refined carbs are my enemy. I’m also vaping nicotine which isn’t helping and I’m struggling to quit.

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

I have autoimmune diseases and when I first became ill and even now I usually feel better when I don't eat too. I was so sick and very fatigued and who knew but I also had H Pylori. Once I got on antibiotics for it some of my fatigue and pain went away. My stomach is easily upset since I became ill. Hope you can figure it out. I take low dose naltrexone for pain and it really helps me.

@lilymol Just wondering if you’ve been back to your doctor for follow up now that the H pylori has cleared?