Questioning my Fibromyalgia diagnosis after learning about EDS

I was diagnosed with fibromyalgia when I first started having chronic pain and my doctor at that time essentially said “it’s a catch all diagnosis when we don’t really know what’s causing you pain, and not all doctors believe it’s a real condition”…soooo that was really discouraging and not necessarily accurate? It took me 8 years to be diagnosed with hEDS and the specialist I saw at UTSW who diagnosed me said I could keep fibromyalgia on my chart if it’s helpful for me to get the treatment I need, but that at the end of the day hEDS is the root cause of my fibromyalgia, POTS, allergy issues, nerve issues, etc. Whether fibromyalgia is the root for you or if something lies beneath that diagnosis - you deserve care for the pain you’re experiencing…and if peace in pursuing more answers is worth the long process of getting to the bottom of things then I hope that you’ll be blessed with a team of doctors and friends that support your health journey 🖤

Yes I was diagnosed with osteoarthritis at 18 and fibromyalgia in my late 30s after I injured my neck at work. I always wondered about getting osteoarthritis so young and how my joints all cracked and my back would go into spasm even primary school ! I also had joint subluxations as a child but didn't know what they were - overall pain too but didn't know it was abnormal. I assumed everyone was like this. It makes me really cross that it took a friend to suggest I look into hEDS and sent me the checklist. I had seen numerous rheumatologists over the years and had to have knee replacements quite young and yet noone ever thought of it ! I was 50 when I took the hEDS list to my rheumatologist and he changed my dx from fibromyalgia to hEDS.