You're welcome. Oh wow, I'm glad your neurologist was thorough--I had to see 5 neurologists before someone suggested to test for it. I am positive for FGFR3, but I tested positive in early 2020, then it was COVID lockdown and I was unsure if I even wanted to do it. Then, my neurologist left the academic medical center where I'm seen and NO ONE is left there who treats autonomic neuropathy (which I have) or considers themselves as having expertise in small fiber neuropathy. No one felt confident implementing the treatment plan she came up with, and I didn't feel comfortable moving forward with someone who didn't seem invested in how I tolerated it or the outcome.

Fast-forward to now, I was evaluated at Mayo for a different (though probably related) condition a few months ago. I asked to consult with a neurologist as part of my work-up; the clinic coordinating my care requested a repeat of the FGFR3 results, so I did it while in Jacksonville. But they haven't given me the results, and when I asked on the status of the referral to neurology, I was told the treating physician wants to have a video visit with me first before placing any other orders... So that feels kind of ominous, but all I can do is wait to see what he says about the results and if I'd be able to even talk to someone in Neurology, let alone someone with experience wit FGFR3 positive neuropathy.

It turns out, there's a neurologist here who's willing to do it, and/or at least see if insurance will approve it. But I just feel hesitant because there are so many unknowns and I don't know that I can coordinate my work schedule to accommodate it (3-5 days consecutively, per month for the first 3 months). Sigh.

Anyway. I had to laugh out loud at your comment: "I feel like pain management doctors will give the medications that I keep refusing. I don't want anything that will make me numb, dumb or fat. I have tried anti depressant in the past and it was a disaster (gained 50 pounds!) to stop them."

I'm not laughing at you, but laughing at the recognition and your ability to be so direct, because I feel the same!! Or rather, I don't want to take the risk of any of those things happening, and given my condition I know that it's very possible I could experience even worse side effects and have a much harder time overcoming them. And I'm not convinced enough that I'd benefit, which makes the risk unpalatable to me.

I generally have the same stereotype for better or worse of pain management doctors, and yes, they'd probably ask about all the same things (neuromodulators, Cymbalta, Lyrica, gabapentin, feel like I can list it off in my sleep). But being on these forums, I've also heard success stories from others who've been successful with other studies or other interventions such as pain pumps, TENS units, etc. I talked with a neurologist who also saw patients at a pain clinic, and she was the one who told me about LDN (low dose naltrexone) and said there might be other infusions or injections, etc. with less side effects that her pain specialist might be able to do. I'm not sure how you'd feel about that.

But because of the success stories I've heard from others here, I've since become more open to the specialty, I guess we could say, even if it's still not for me.

Because of this, the cornerstone of my treatment is physical therapy for chronic pain, based on the "biopsychosocial" model. I was lucky and found a PT who was trained in the differences between treating chronic vs. acute pain, and we use a framework/model called Graded Motor Imagery (GMI). My pain is not completely resolved, but it's much, much better and my quality of life is much better and I'm hoping could get better still. I was able to put together most of my own chronic pain program (there are still some very frustrating holes in it), but this was most accessible to me because the only other way to access that kind of treatment is through an organized chronic pain program similar to Mayo Clinic's Pain Rehab Center.

There's also a very large and well-known rehabilitation hospital near me that offers its own chronic pain program, but I feel very conflicted about it because I feel these programs are so necessary but not set up to be accessible to regular people who have regular responsibilities (like jobs!) and/or have experienced medical trauma, so transparency is key. Anyway, at least where I live, that wouldn't have been an option for me. So I worked with my PT(s ) to come up with a plan and teach me what to do.

And it didn't make me "numb, dumb, or fat" lol. But everyone is different, and it's not easy either of course.