How my Fibromyalgia started and the evolution of research

Thank you for confirming! I was born with fibro and I know my dad had it too but back then that diagnosis didn’t even exist. When I was younger my doctor dismissed it as ‘growing pains’ and I wasn’t diagnosed until my 20s. I am 67 and have coped all my life but now have chronic back pain that debilitates me, but the surgeons say my back is no worse than anyone else my age and attribute my pain to fibro. All I can get are the occasional back injections but that is not enough. I am hoping a string treatment will be discovered soon.

I’d be interested is what exactly they can do for you? Not being sarcastic, just haven’t heard of anyone getting a goodly amount of relief unless maybe on actual pain meds.

They can perform tons of tests to rule out everything else, discuss different pain med options with you, and then the 2-day class focuses on non-pain med options.

Had tons of tests, attended class, tried most everything doctors wanted me to try and cough tolerate any and live a normal life. I was in a Naltrexone study at Stanford 16 years ago and it did exactly opposite for me than what it was suppose to do. 25 years now and just work closely with my doctor who gives me actual pain meds to use ONLY WHEN ABSOLUTELY NEEDED. Everyone is different and hope something works for you.

I was gaslit by Drs and even certain family members for decades. My symptoms were all over the place and none of it made sense to my Drs 25 yrs ago. After 3 failed ankle fusions 12 yrs ago my ortho suggested I do genetic testing, especially since I'm adopted. I was diagnosed with Erles Danlos Syndrome. I was diagnosed with Sjorgens syndrome (13 yrs ago) I also have the MTHFR gene which adds to the party. I was diagnosed 6 yrs ago with St4 NH Lymphoma. After 2 years of chemo, radiation and immunotherapy i am now in remission🙏🏼❣️But, It wrecked what was left of my immune system and I now can add peripheral neuropathy, Fibro, and RA. My daughter is 31 and is having the same symptoms I have so she is being tested for a host of genetic conditions and other immune issues. She has Fibro. Hopefully, she won't struggle with these invisible illnesses like I did and we can keep an eye on the grandkids. My son is a Dr. and he recently told me there is a direct connection between Sjorgens syndrome and Lymphoma. When he has diagnosed someone with Sjorgens he automatically orders a cancer panel. I trying to find a new normal also. I've had to admit I will never work again as a chef in a commercial kitchen. I'm grieving the loss as we speak. I'm applying for disability and handicap plates. I'm learning to pace myself because if I don't I will regret it later. I'm just blessed to be here everyday, I have 5 awesome grandkids I adore. I try to laugh everyday because it is the best medicine and count my blessings. I've started PT for my balance which includes swimming. I have a great therapist and I totally agree with the spoon method. Basically, you start your day with X number of spoons. Each activity will need a certain amount of spoons. When you get low on spoons at some point, you slow it down. That's when I will try some self care. A face mask, a cup of tea and a treat, any small way to appreciate the fact that you got through your day!❣️