Anyone else feel like people don't think Fibromyalgia is real?

Posted by kselliott22 @kselliott22, Oct 14, 2025

This is my first foray into a support group so please bare with me. I was diagnosed with Fibromyalgia in August 2024 at Mayo Clinic. I had several weird symptoms that mimicked Sarcoidosis (which I was diagnosed by Mayo in 2010 but had gone into remission). However, many of the symptoms are the same and I was run through the works at Mayo and it was determined that it was Fibromyalgia. I was relieved to finally have a diagnosis to explain the chronic fatigue, lack of desire to engage in activities that used to bring happiness, fairly consistent pain, trouble sleeping and waking up in pain in the middle of the night, restless leg, anxiety, depression, fibro fog, etc. When I got home, my primary care and the chiropracter I have seen forever said, "that is what they diagnose you with when they can't figure out what is wrong. It's a catch all". This instantly discredited the diagnosis and made me doubt it because these are two practitioners I trust. After a year, I am still having symptoms and still trying several therapies (apps, breathing, mental health resources) and even added back a medication or two from the Sarcoidosis days.

I know there are people who suffer from this way more severely than I do. I am able to do most things I want and manage to push through the painful sleeping to be at work and function as best as I can, but I know I'm not lazy and this is not normal. For all of the things I can do I am very grateful. What I am struggling with is understanding the disease and what is just old age (I'm 54) or too many miles on the body vs what is Fibromyalgia impacting.

If anyone else had a similar experience of having your diagnosis dismissed by others, please share what you have done or are doing to get better physically and emotionally, and how you wrapped your mind around reality, regardless of what your reality has become.

Thanks to anyone who has time to respond and I appreciate the opportunity to learn from others.

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

gmaboof | @gmaboof | Jul 23 2:19pm

Hi. I have been suffering with fibro from age 45 I am now 78 soon to be 79. things have not changed at all. when they finally decided I was not nuts. they gave me the name fibromyalgia and said unfortunately we don't know what to do about it so today I hear the same thing. other than druging me and telling me I need to exercise more. I am still suffering and have not found any doctor who really cares. After many years of pain Istoped going to M.Ds I changed to holistic Med found a wonderful Dr. and useing homeopathic med and going to the wellness center in my area was the best for me . Now he has retired and I am not able to find anyone like him. I would recommend that you try to find a wellness center near you I think It will help you.

donnako5333 | @donnako5333 | Jul 23 3:10pm

I have had fibromyalgia for 51 years since 1975. It began in my left leg with pain and weakness and has progressed throughout my entire body. My legs, feet, hands and arms are the most painful, but there is pain everywhere. I also have headaches constantly. I was diagnosed in about 1987 and have been to pain clinics at Stanford, UCSF, and Sacramento. I have tried all the medications without success. I am allergic to most and get hives, or a few made me a zombie and I'm not willing to live my life that way. I walk in the community pool for an hour and a half 3 days a week and do Qi Gong 2 days. Walking and standing out of the water is very painful. I keep moving and doing as much as I can, but everything is becoming more painful and difficult. I am 76, almost 77, years old. I live in Ft. Bragg, CA, so there are not facilities here to really help with the issues. I have been reading lately about the fascia in our bodies. Does anyone know more about this? I have described my pain in my arms and legs as feeling like they are in a vise and getting tighter and tighter. This sounds like fascia to me, but I'm not sure if that is feasible since I've always been told that it is a nerve problem. I would greatly appreciate any help or information anyone can give me. Thank you. Donna

brendaelk1558 | @brendaelk1558 | Jul 24 6:24am

Yes, that is an understatement, My doctor does not even believe in it, Well My cardiologist, my primary does, kinda I think! There is nothing they can see so maybe that's it. I have been diagnosed for 20 years and believe it is a syndrome of different things! I have IBS, aches and pains, temperature sensitivity, anxiety and depression, and who knows what else, the foggy mind of mine can't remember all of them!

pennylynn | @pennylynn | Jul 24 12:16pm

Some doctors and lots of people don’t think it’s real. Through testing and research it has been proven to be real. I was dx’d by a knowledgeable Rhummatologist who I trusted. If you can’t get treated for it by your doctors I would change doctors, but that’s up to you. The mayo doctors know their research and medical knowledge is pretty good.