Does anyone feel misdiagnosed?

Have you tried a functional medicine specialist? Or a rheumatologist? They can be very helpful finding root causes. As far as fibromyalgia is can be totally disabling. That said I’ve been seeing a lot about fibromyalgia possibly being Sjogrens instead.

I understand your doubts! I have had fibromyalgia for over 3 decades and I still question it. I have also recently felt my symptoms over the course of my life fit Ehlers Danlos syndrome or Hypermobility Disorder. I have no way to get it diagnosed currently and even if I did, there isn’t a cure and it’s still about the same approach. Pacing practices and gentle activity. A healthy, calm lifestyle as I can possibly manage. And try to get treatment for problems as they arise.

I was diagnosed when I was about 35, I’m now 77. My dr at the time (he’s now deceased) always believed fibro was not the right diagnosis - he felt that with time I’d develop enough symptoms to make a better diagnosis. I’m part of several FB support groups and both the comments of folks with fibro or peripheral neuropathy - which I have - don’t resonate with my experience. I absolutely do identify with the post-polio group. I was born in 1949 and as a 3 or 4 year old I was prescribed high-top, heavy orthopedic shoes for weak ankles. My mother said repeatedly while I was growing up that doctors said I should never take ballet, as ballet would destroy my muscles. I did not have paralytic polio, but I wonder if my parents hid something from me. I’ve learned that in cases of suspected mild polio doctors would either encourage ballet lessons to strengthen muscles or strictly discourage it for the reason my parents were told. Who knows?

In my twenties when I started teaching, I had to nap every weekend. I was exhausted. A few years later, my body would suddenly start to tremble as I went off to sleep. Then a couple years after that, I would awake at night with a knife-like poke sensation in my mid-spine. - within a few months, my spine was inflamed and I was in excruciating pain. Luckily, it was the end of the school year - during that summer, my legs felt light dead weights and it would take me 30 minutes to get from bed to bathroom in the morning. My skin felt like it was crawling with bugs, like I had the flu. My joints were weak - hard to pick up a half gallon of milk. I was exhausted. After eliminating RA, Sjogrens, lupus, etc, I was diagnosed with fibro and returned to work while taking low-dose Elavil for stage 4 sleep, Naprosyn (anti-inflammatory), and Parafon Forte (muscle relaxers). After about 5 years, I was able to go off the Elavil, but my legs remained tired, I was always exhausted and over-exertion or exercise resulted in “post-exertion malaise” or flu-like feelings. I now deal with extreme leg stiffness and fatigue - too much exertion and I require lots of rest to be able to move again, as I’m so stiff I’m like a piece of cardboard and can only shuffle my feet.

@bswpb oh yes. I’ve been to so many doctors over the last 10 years; hence my last resort was Mayo

@rodeos thank you for your response

I was diagnosed with fibromyalgia 10 years ago at age 27. Nerve pain and muscle pain. Last year I found a fascia release massage therapist and other than medication it’s helped me the most. There may be research coming to connect fascia tightness to fibromyalgia, however, fascia tightness is also a hallmark of Ehlers-Danlos syndrome and hypermobility. The treatments seem to help the same symptoms as my fibro diagnoses. The pt exercises that have helped me match right up with hypermobility. But I think pain doctors are looking at hypermobility too narrowly… just because my joints aren’t locked/super flexible, I have all the symptoms of it and I am a flexible person.

I was diagnosed with Hypermobilty Syndrome 5 years ago (with a differential diagnosis of Fibromyalgia) At the time I had not heard of Ehlers-Danlos. After 2 years of seeing an RA, he retired and I was referred to another who called to tell me "I'm sorry we didn't year adults with Ehlers-Danlos syndrome. I don't know if any RA in Arkansas who does at this time." I said, " I have Hypermobilty Syndrome though, do you treat that?" That's when I learned that both described the same general diagnosis. There are variants, but they are just different words used for the same diagnosis. My PCP agreed to keep prescribing my Celecoxib and to refer me out the first time he feels I'm not responding well anymore. I've never felt that my symptoms align with Fibromyalgia. I test a 6 (or a 7 if you asked "could you ever place hands flat on the ground standing" ) on the Brighton test for Ehlers-Danlos/Hypermobilty. I'm 57 and overweight so I can no longer do the hands flat on the floor LOL One elbow no longer has the 10% due to having broken the radial head on that arm at 40. My joints still hurt, even though I take 200mg Celecoxib twice a day, but I don't get the really bad flares as often as I did prior to medication. I am fatigued almost all the time, morning tired is getting better with CPAP for REM sleep Apnea issues, but the fatigue level raises through the day. My pain is almost exclusively joint related, with Achilles tendon and IT Band issues as well. Due to all these things, I do NOT agree with the differential diagnosis of Fibromyalgia, but I'm stuck with it on my record!