I was just diagnosed with secondary fibromyalgia on Monday- primary Sjogrens in November.
I feel like this diagnosis makes so much sense; I’ve been suffering with joint and bone pain for such a long time.
I’m sure you can all relate, not everyone understands or believes the severity of our pain when a scan comes back normally.
After the fibromyalgia diagnosis I feel validated. I feel frustrated. But I also feel eternally grateful for those who did believe me and so fortunate to have a path ahead of me full of healing, health and strength. There is no easy solution. But there is community.
I’m glad I found this site, and got to share a little of my fibro-story :]
Welcome to the forum Jane the feelings you are feeling at the moment about your diagnoses I think a lot of us have felt remember we are here for you if there’s anything you want to discuss or if you are just feeling like a chat. Good luck and keep safe.
For sure, Jane! We hear this on all our Ben’s Friends communities for people whose lives have been touched by a rare disease. When I was diagnosed, honestly, one of my first thoughts was “What, you mean I’m not just a hysterical, menopausal woman with OCD?” (And sadly, my doctor was a woman…)
We’re glad you found us although it’s too bad you needed to look for us. Hang in there, and hang out here.
Hi Jane! I’m so glad you found Ben’s Friends. You will find a lot of support here. I completely understand about being invalidated by medical professionals and friends. My PCP immediately thought I had fibromyalgia. So in a way I was validated right away. But now because I have Fibro, if a doctor cannot figure out what is happening to me medically, they will say “ oh it’s because of your fibromyalgia.” You have us to bounce questions and thoughts off of. Take care, Jean
Hi Jane! I’m a 59 year old who has had fibro for 25 years now. I’ve been blessed to have good doctors to help me along the way. We understand that feeling of being validated. If you have any questions at all, don’t hesitate to ask.
Shari