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How to find a rheumatologist to treat fibro

Posted by js2022 @js2022, Aug 1, 2022

I'm finding it close to impossible to find a top notch rheumatologist to treat my fibro. The one I did find can't see me until March 2023! Any suggestions?

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js2022 | @js2022 | Mar 2, 2023
In reply to @hopefulstrawberry "I have also had very little help from rheumatologists. I have had some success working with..." + (show)
@hopefulstrawberry

I have also had very little help from rheumatologists. I have had some success working with a neurologist (mainly for the migraines) but I am now leaning toward pain management specialists. Also, be wary of massage therapists or physical therapists who don’t understand FM. I was in bed for a week after getting triggered by a PT. She didn’t mean to, of course, but I should have been more careful in screening the person I allowed to do my Physical therapy. It’s a rough world out there! Good luck.

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Yes, have to be super careful myself too with getting PT. Last time it caused so much additional pain, I just stopped and do stretches at home.

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rjjacobsen | @rjjacobsen | Mar 3, 2023
In reply to @js2022 "My new primary/geriatrician said I have no need to see a rheumatologist for my fibro. I..." + (show)
@js2022

My new primary/geriatrician said I have no need to see a rheumatologist for my fibro. I too use a pain management doctor and if I ever do PT again, I need to find one very gentle or else it causes more pain!

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For what it's worth:

The rheumatologist (a very good and experienced one) I recently saw who diagnosed my FM, quickly and frankly admitted that he and rheumatologists in general aren't the experts in treating FM.

He recommended pursuing a pain management specialist and an specialist that has experience in muscle diseases.

This is consistent with what others have reported.

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katcollins | @katcollins | Mar 3, 2023

I’ve been bounced around between doctors as well. I’ve been to my neurosurgeon, two neurologists, a rheumatologist, and my PCP. It’s very frustrating! They have suspected SFN, Fibromyalgia, and Migraine associated vertigo. The only treatment I’ve been given is Gabapentin and a script for PT. It’s very hard to just get up and get back to work like people want me to.
Best of luck to you all,
Kat

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