Finding a doctor who can help

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cbuckley221

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Joined
Jun 26, 2023
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Reason
DX FIBRO
Diagnosis
11/2020
In my time since I've been diagnosed I've been trying to find a doctor who can provide me with adequate treatment options and all I've found so far have been doctors who have suggested small solutions aka band-aids over bullet wounds. What specialty of doctor has provided the most support for you, especially on topics of muscle weakness and mitochondria dysfunction?

The 2 neurologists I've seen aren't interested in dealing with anything beyond my migraines because Fibro falls outside of their scope.
The pain specialist had said I had already tried everything they'd suggest so they didn't have options for me.
The 2 rheumatologists I've seen said the only options available to me is diet and exercise (already doing).
The endocrinologist also only suggested diet and exercise, but I'm trying her again this month.
I tired to get into a neuromuscular neurologist but they refused to see me because Fibro falls outside of their scope.

I don't know who to get an appointment with, because I keep running into brick walls.

I'd love to hear about the kinds of doctors you all see and the treatments that have worked best with those doctors!

Thanks!
 
muscle weakness and mitochondria dysfunction
You'll only find functional doctors to be able to help with those things, if at all. Mitochondria dysfunction isn't even a category in mainstream medicine. (Well it is if you have certain specific rare mitochondrial diseases, but anything more than that they'll say 'not proven'.) And muscle weakness would be reduced to simply strengthening exercises, which doesn't cater for a lot of what we feel as "weakness".
the kinds of doctors you all see and the treatments that have worked best with those doctors
I guess I'm different to most, but am fully agreed with @sunkacola's advice post on this matter....:
No treatments of my docs have helped, that I can think of, most harmed, everything I've found myself, so I'm my best doc, and I've kept those docs for support that acknowledge that and serve me in case I need some conventional checking, my cardio knows me and gets any bloods checked I want, my GP too, but not quite as flexible. My cardio is also willing to prescribe things like L .D N because she trusts my expertise and care about going about this, and these 2 have seen my ups & downs, times where I cannot manage to wait for 30 mins or sit in their chairs, so I have to sit on the floor, have difficulty moving etc. (My body can't afford to go to docs further away than 10' cycle minutes, a considerable strain if 25', so I'm lucky at least to have these two close by, as well as many others and 2-3 hospitals that are "OK"...)

But I do actually get most of my knowledge from docs - from US functional docs on the web, on webinars / summits, and I check every idea in studies on pubmed & JAMA for its evidence base, treble check side effects, which I usually get etc. Some of them offer telemedicine, but when I listen to them to confirm whether I'd want to, I get the feeling they are not going to help me better than I help myself. I listen carefully to Teitelbaum, Hoffman for MCAS, Huberman & Selsick for sleep, any physios on youtube for specific exercises/acupressure etc., but I can see there's lots that I can't apply to myself, so it's just looking for needles in haystacks for want of at least needles if I can get no more. That's for energy. For everything else I've found so many needles that I've been able to sow myself a quite good suit with a lot of hard searching work most of the time.
Also generally the dependence on anyone than myself is something that may work for less active people, if they're lucky, because they haven't (really) tried everything there is. But I'm someone who really has, meaning maybe 500-1000 ideas, using say >100/d. "Relying" on someone as this going to a doctor for help is takes me downhill, because it distracts me from my own self-care too much, stops me watching out for danger, so is actually dangerous for me.
 
For the most part, when it comes to fibromyalgia, doctors are only good for prescribing pain medication. And that can only take you so far. Often it does nothing at all, and/or you have to deal with side effects that make it too unpleasant to continue.

Doing your own experimentation to find out what non-medication kinds of things help you the most is the best approach, even if you also take pain medication.

When it comes to what kind of doctor is helpful, that's not something that can be even answered because some people have found good suggestions from one kind and others from another kind. It all depends on who the doctor is and how they see things and relate to you, rather than what branch of medicine they practice.

The treatment that works the best is the kind you discover for yourself, as Jay says above.
It's worth the effort.
 
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