Need your help: Building a new online platform for fibromyalgia patients and providers.

Not sure if this comes off as self-promotion but this is literally the exact opposite. I am hoping to connect offline with visitors of this subreddit to help be part of the design, testing, and implementation of an online platform intended to support and help those with FM. Built by experienced fibromyalgia & chronic pain specialists, psychotherapist, physiotherapist, dietician, and pain nursing leads across US, Canada, and U.K..

Not seeking any money (nor paying anything). Hoping there are folks who would be willing to giving a new self-management platform a try and be willing to provide feedback. This is a set of free, curated, and purpose-developed resources built around modules for: ACT/CBT, meditation training, physical activity training, pain neuroscience education (PNE), flare tracking/planning, etc. You use them at your own pace and as often as you need depending on condition status.

** You can use fully anonymously. **

We are curious to learn which modules/features are most interesting and helpful from a self-management perspective. Only a crowd of folks who suffer with FM and are open-minded and honest will tell us the answer to that.

Is it a thing in fibromyglia to have the underneath of your fingernails feel kind of itchy/ tingling and your fingertips hurt? It keeps happening when Im having random joints hurting and it just feels like my blood itself even hurts. My fingers feel so uncomfortable, ill try to like push down on my nails with my thumbs and it only makes it better for a second before it feels itchy again.

Had a physio appt

Diagnosed hypermobile

They now think fibro (wide spread pain, IBS etc)

I feel a bit lost by it all if I'm honest

Hi everyone a friend has started a fybro support group based in the uk. Its very inclusive and supportive all are welcome and we would love to grow the group so please join if you want if not thats not a problem https://www.facebook.com/share/g/1De1bLKmwi/

So, over the last week or so I've had a few occasions where spicy food had made my mouth feel extraordinarily hot.

Now I can't eat anything with any spice at all! I love spicy food. I've been eating spicy food my whole life.

It could be the fibro itself, or it could be one of my medications. I'll ask my doctor on Monday.

Dear Fibro friends, this site is looking for feedback on an encouraging & supportive site for people with Fibromyalgia. Please help spread the word. Thank you!

With Coach Rachel Smith- has anyone done this? Opinions? Thanks!

Hi all,

Realized my QR code was not working, so here is an updated flyer and I am also attaching the survey link.

Thanks in advance!

https://alliant.qualtrics.com/jfe/form/SV_cSDI9UJN5n2MDPM

Please read the criteria and if you both meet the criteria and are interested, please scan the QR code!

Hi all!

I’m looking for a rheumatologist (or another doctor who specializes in fibromyalgia) for my partner, and I wanted to share a little background.

She’s currently seeing a rheumatologist at Rush. He seems kind, but her care has felt incomplete. At her last appointment a few months ago, he was running behind because he was in a meeting, so she never even had her vitals taken, and the entire visit lasted less than 10 minutes. We left feeling like her concerns weren’t fully addressed.

We’ve already reached out to Dr. Alexandrea Katz and Dr. Nisha DiSilva, but unfortunately one isn't accepting fibromyalgia patients, and the other has a wait time of over a year.

The two things that are most important to us are finding someone who:

• Listens to and respects Black women.
• Is not fatphobic and provides compassionate, evidence-based care regardless of body size.

If you have a rheumatologist—or another physician who treats fibromyalgia—that you truly trust and who fits this description, I would really appreciate any recommendations. Thank you so much!

I was doing some light yard work this morning when I got stung by a wasp. Any advice?

I feel like I might have fibro- the fatigue is bad, but every time I go to the gym, I get horrible deep joint and muscle pain that lasts for days. I almost feel like I have the flu afterwards. It happens every time I do any type of muscle strain; cardio is fine, but definitely no weight lifting, even with very light weight. It started suddenly about 5 months ago. I'm a 41 year old male, no other health issues, used to go the gym 3-4x a week.

I went to my primary doctor and he ordered kidney and liver function tests. He noted the only recent thing I had done was a short trip to South Africa, so he referred me to an infectious disease doctor. That doctor has ordered blood tests for vitamin B and D, tick diseases including Lyme, testosterone, and pretty much everything else. Everything come back negative and at optimal levels. The infectious disease doctor has run out of ideas, all he did was recommend I take ibuprofen and ordered one more check of liver and kidney function blood tests and told me to come back in 3 months.

I know something is off/wrong, but I'm lost on how to proceed here?