Fibromyalgia sufferers

[QueenandKingMum]

Can you please describe what it is like for you? I have had 6 months of all over joints, muscular, tendon/ligament pain (feel like I have been run over every day). Saw a rheumatologist who declared I didn't have RA and discharged me back to GP. That was July, pain still excruciating and GP had done more blood taken but suggestion Fibro. I am so tired and sore I can't bear it.

Hecate I do that with my cleaning too, when I was at a pain managmenet group (ha ha what a joke) the lady there suggested doing the "15 minute fling" whereby you set a timer and do 15 mintues (or less, but not more) then have a break for as long as you need, then do another set time, etc . The trick is also to not think "ooh I feel like I could 25 mintues today", because that will set you back even more. I do it that way for all my cleaning now

I'm convinced its FM, I could do without the hoops to jump through. :-/ I'm not giving up though. My iron levels are ok just tested. Thyroid checked and ok but need to know levels. I will pursue vitamin D and B12. I hope (truly) it's that simple. I don't think so as its been coming on for years.

QueenandKingmum- it hasn't made me feel like that.

I am wondering though if, takne in combination with my amitryptiline and citalopram is helpig me "keep calm". DH is 5 months into a 6 month out of area tour (military) and although there is so much shite going ona nd stress etc, I actually feel quite clam and almost too calm. IYSWIM.

but it never made me feel drunk

What's citalopram?

They have me on fluoxetine

Its an anti depressant. I take a low dose, about 20mg every morning.

They mentioned that, ok, I feel properly armed, I know there is something similar to gabapaten I can try. I won't say no

I started crying. :(. She gave me something called pregabalin 2x per day and I see usual doc next week to either increase or change. I also got stronger cocodamol only fr night times. She said get my usual GP to confirm but she said yes fairly likely fibromyalgia. Blood tests all normal.

My consultant suggested having 3 hot/warm baths a day; I can't manage that but I do know I am better on the days after I had 2 baths the day before

Hecate - interesting about your thyroid and b12 (did you check vit d btw?). Have you tested your t3 or tried supplementing with t3? And lol to the 'holy tsh test' - apart from the basque, my consultations go exactly like that youtube clip!

Ted, sorry, I meant vit d in nmol, thanks for the extra detail. I just meant, don't get fobbed off with 30nmol being 'normal', check the results yourself and look for around 90 nmol. My sister got told hers were normal at 30nmol (borderline between deficient and insufficient in fact, idiot GP)

No, never had a vit d check. do you mean complementary supplements?

I will try vitamin D. My homeopath actually recommended that and sulfur. Can't hurt.

Took bath, bliss. Had to get out as dizzy and feel like I've slowed down, weird feeling. Pain is better.

Definitely get that vit d tested, hecate! Do you have bone pain, maybe shins, ankles, elbows, knees? That can be a sign of v low vit d. My pain has gone since treating vit d deficiency. A deficiency is also linked to hypothyroidism so more than likely you are deficient. Do you also have high 'bad cholesterol'? Again, this can be a sign of vit d deficiency
It doesn't solve everything but it can make a big difference to the pain
Check the levels yourself though - some health authorities still count very low levels as normal, and as ted says, with autoimmune conditions you are looking to get levels high end anyway.
Magnesium oil is really nice for cramps and aching muscles. You can absorb it thro the skin unlike some other supplements. I get mine from holland and barratt.
When you get the vit d supplement, if the GP prescribes it, don't get the one with added calcium, just pure vit d. If you get it yourself it must be d3 not d2 and get a fairly high tablet strength, not the 400 iu ones. You can take it weekly if that's easier
Get your levels tested first tho (GP will prob do it if you are hypo and present with symptoms) so you know how much to take, and get the GP to monitor serum calcium if taking high doses

Yep it is mad! The nhs is bankrupting itself this year on vit d at ridiculous prices, which is why some regions are strict about who they test now, as we are almost all deficient, so if they officially know about it, they'd have to treat us all!
But if you are hypo, you are likely to be more deficient than most, and need more than most as well, so go get that test done!
Interesting about cheap sources of magnesium salts too - I feel a nice long bath is due

Hello... Just thought I'd mark my place, hope you don't mind as I don't have a dx. I think a dx of chronic fatigue syndrome is more likely for me (seeing specialist next month) but not sure yet.

Sick of the pain and exhaustion and starting to face the fact that I may not be able to keep my job.

hiya chuck!

Thanks for the vit d3 advice, I have 5000 in cupboard and an amazing Ancient Earth minerals I will take with it. Anything to stop this agony.

No question the bath and nap helped me, but I am petrified when I work 4 days in a row soon how I will cope. DLA will be impossible to get I am sure. How are we meant to survive?

Hi fuzzypig! What symptoms are you having? I don't know much about CFS

I was diagnosed in 2009 after around 15 years of problems. I tend to have neck should hip and back pain. Elbows come and go. Found reflexology helped a lot.

I'm going to be applying for DLA soon too.

There's a lot of overlap between FMS and CFS, some people even say it's the same illness, but then other people have a dx of both.

I have a lot of pain in muscles and joints, I feel like my skeleton is made of lead, and my brain is in thick fog. Completely and overwhelmingly exhausted, and no amount of sleep fixes it.

I'm into my third year of dla. I still manage to work but as a nursery nurse it kills me sometimes. If you need any advice pm me x