Hi Haley! Lots of good suggestions already...
clear MRI and blood works I was told it was fibromyalgia. Is it common not to go to rheumatology to rule out anything there?
The ACR 2016 criteria stress we no longer have to rule anything else out for it to be fibromyalgia, but also that we still need to rule them out. That's to speed up diagnosis knowing that studies show that if these criteria fit it will likely turn out to be fibromyalgia (too).
As you've had blood works done, the question would be if these were comprehensive and encompassed rheumatological factors like CRP. It's likely, cos bloods aren't normally neurological. So it might be like @cookiebaker
infers that they have
been done. My 1st rheum. sent me to get ankylosing spondylitis checked via MRI, then disappointed sent me on to neuro and endocrine etc. I got almost everything done by specialists, that and orthopedists etc., so tallied >40 docs in my first year.
Anyway my mobility and tingling is better, been replaced by burning nerve pain all over and my hands are on fire!
That sounds severe and explains your 3 meds. But watch out for side effects from them, there are alternatives. And dunno what supps you've already considered, aside from the ones @Carolyn Rhodes
has mentioned, but the B-vitamins, esp. B12, will have been recommended by your neurologist? If you research all of these like sunkacola's suggested, and dig a bit deeper, you'll find that there's the easy and the advanced version of all these supps - better and worse types, dosage, when to take etc..
Anti-inflammatory diet, Saunas, Acupuncture/reflexology, Swimming/yoga, Supplements.
Is there anything else anyone can advise that might help me?
There are "20"+ types of diet, 20+ types of physical treatment, incl. heat/cold therapy, that can be done to you, or you can apply yourself. If you think inflammation may be your biggest issue, there are another 10 supps that'd fit, but they also fit for many other of our problems.
As sunkacola's said it's about starting "low and slow", and as the ones you've listed have a certain evidence and fit to your problems you may not be needing more ideas yet.
Of the 5 big areas 1) mental 2) physical 3) diet 4) environment 5) pills, I'd start "one" of all you've suggested in each area. What you could add at the same time is 1) is grieving / acceptance / coping / tracking & analyzing / relaxing / pacing, and 4) sorting out and preventing environmental triggers outside and inside.
If there's one that I feel is missing most for nerve type problems it's one sunkacola recommends, electrotherapy, for instance a TENS unit (if you haven't got heart or seizures problems).
The one I'd go most careful on is sauna, as many of us have problems with heat, not (just) with the cold. But as anything it's a matter of pacing. For me 1 or 2x 8 minutes was OK, and max. But this is also the one with least evidence, aside from the very alternative method of reflexology. Short sharp cold, like cryotherapy actually has more evidence than sauna, since it improves inflammatory cytokines, a few studies say. Just aside from cold showering several times a night I'm thinking of trying whole body cryotherapy ('cold barrel') again, as that used to sometimes be very helpful for energy. I'm very lucky that it's in my own town, 10 cycle minutes away.
: A weird one. But my cryotherapist & acupressurist did ear acupressure
on me for a year, which is a form of reflexology. She did a great deal for my local pains, but I'm not sure if it was really the reflexological part. The most 'miraculous' treatments were 3 that activated breath, legs and I think it was temperature control, but that wasn't done on my ears it was directly on my body. And self-applied acupressure on my body is now one of my mainstays for all local pains or rather problems, as it even relieves of itching etc. I've even got a "miraculous" one there to calm panting immediately. Stopping going to her and having more motivation to develop my own exercises, stretches, acupressure, massage gadget etc. quickly resolved quite a few old things she hadn't had that much success with and also anything new. I think she and her treatments taught me a lot, but I'm much better off on my own now.
: We don't actually think of it as anti-inflammatory, but the Mediterranean
diet has a lot of medical evidence to help our general health, and actually has an anti-inflammatory component. We're not talking 'visible' inflammation here as in rheumatology / CRP, we're talking more cutting edge of deep down inflammation like cytokines & chemokines etc.
: Also has medical evidence for it (for fibromyalgia I mean all along). It harmed me, so if you realize after the first 3-4 times it is only hurting and not helping, stop. For many it does neither, but very good to try it. I've now found after 2 Western acupuncture stints, that Chinese acupuncture usually doesn't hurt me, despite thicker needles, and helps quite a lot.
: Anything you like as long as you start low and slow, like @Carolyn Rhodes
says, and that may mean for some activities a few seconds per exercise or a few minutes altogether.
For an active, travel obsessed, full time worker.. the last few months has been very different. Hoping to find a new normal soon - not how I thought the first year of my 30s would go!
Oh wow, I bet you're downplaying a lot here... I hope your new normal can still be "full time", and praps a bit above 50% of the physical activities you've been able to. I've had to divert my "full time" quite a bit, cos that went from 100% to 5-10% and then back up to max. 35% after about a year, and now 10-25% due to an additional condition. But then I've had quite a bit more of my life behind me, altho a great deal of it was a long hard painful slog that you've maybe been spared it.
That's the mental aspect, which if the fibro is severe may mean turning to a new life, new orientation, new mindset, new ways of contentment and happiness and then build up bits of your old life into it.