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So, fibromyalgia

(6 Posts)
MyVisionsComeFromSoup Thu 23-Feb-17 13:36:28

Having had aches and pains for years, and seen various different consultants, with no tests showing anything, I was diagnosed with fybromyalgia this week. How likely is it to be something else, and am I likely to be ignored if i get any new or different pain, will it be "why are you here, of course you'll have pain, you have fibromyalgia"?

Rheumatologist was quite old-fashioned in some ways (in that she also diagnosed me with Ehlers Danlos Type 3, which is on it's second name change since it was that smile), but at the same time was talking about how I needed to take a holistic approach to managing symptoms, do Tai Chi for it's "centering", that kind of thing. Most important thing was to maintain good sleep, followed by as much cardio exercise as I was able to do, and keep taking the painkillers.

Is that it, now then? I'm increasing my Vit D supplements, as my levels were right at the bottom of "NHS normal" in September, and I haven't noticed much difference on my current supplement levels (although I would probably have been more ill without them to be fair), but is there anything anyone has found helpful? B12 was mid-range (around 500 from memory) so that could probably do with a supplement too I suppose.

wfrances Thu 23-Feb-17 17:59:35

after diagnosing me with fibro the rheum referred me to fibro physio and chronic pain management and sent the gp a list of medications to trial tramadol ,amitriptyline and pregabalin.
ive not come across anyone being dismissive of my pain because i have fibro.
have you been referred on?

LunaNightSky Thu 23-Feb-17 18:32:25

I was recently diagnosed in November. I started yoga and take zapain and amitriptyline for night time pain. Gentle yoga is good as it keeps you moving, I've also been referred to hydrotherapy by physio.

I know the pain can be bad but my advice is to do a bit but listen to your body if it's too much xx

MyVisionsComeFromSoup Thu 23-Feb-17 18:44:34

I'd already been taking naproxen, pregabalin and amytriptiline, so no new medications added, i'm going to wait till I get my copy of her letter to see if she's happy for me to speak to the GP about increasing the pregabalin. Had already discussed the possibility of the pain clinic, so I might push that on, plus I'm allowed another 6 sessions of physio, officially for my neck, but I can get the GP to change that to something more fibro friendly I suppose.

Not being referred on other than that. I was just concerned that if I ended up with pain from something else, like arthritis, it wouldn't be investigated as I already had pain ifswim? I'm struggling quite a lot with fine motor control in my hands (which everyone medical is ignoring), so I'm concerned that if that's caused by something else, it might not get considered til it's too late. Am a bit of worrier atm grin.

I've got very good at pacing (now that DH has learned not to ask me to "just do x or y" - we have our own business), so I'm hoping that helps. Pain is pretty much at a constant level, I don't seem to have had flares as such, and I'm not nearly as bad as some people seem to be, which is something.

MyVisionsComeFromSoup Thu 23-Feb-17 18:45:25

just realised I can't spell it would seem! Assume I do know how to spell stuff, just typing gets away from me sometimes grin

Mehfruittea Sat 25-Feb-17 01:17:39

I was diagnosed 5 years ago with EDS type 3 and Fibro. I also have low vit d, anemia and have vit B12 shots. I take Forceval prescription vitamin, as well as pregabalin, Naproxen zapain. I have fentanyl patches and oramorph for emergencies!

My fingers are the worst affected, I use dictation software at work so that I can reduce the pain.

Pilates has helped massively, building core muscles for stability. Not much helps the Fibro fog, but I have just started using Quell for my Fibro pain. Bought online from Amazon US site it's pricey but will be worth it if helps to reduce even half the pain. After 6 days use, I think it is working!

We sound very similar, happy to share and support with whatever you need. brew

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