Vit d or fibromyalgia?

[Sebbybabybucky]

Hello, I'm new here.

I'll try put this short. Since December 2022 I have had hand ache, which spread up my arm in January 2023.

Went to Dr in February as it was rapidly spreading to my neck, shoulder blade, and mirroring on the other side of my body.

Now it's everywhere.

Anyway, all blood tests are fine, no RA.

But, my vitamin d level was 43 nmol, when should be between 50/75.

So I'm on (have been for 3 weeks) 800iu vit d tablets.

Nothing is helping, no pain relief. Or vit d. And it's getting worse.

I don't believe my level of vit d is low enough to cause the pain I'm in, and how frail I feel. My mum and sister have fibro, and my mum says it's like watching herself in me right now.

I get stuck in positions, my body feels like flu but much worse. Muscles feel bruised. I can't get up like I normally could, I can't walk properly.

If I bend any part of my body it will cease up and I have to physically uncease myself.

Feel like Dr will just keep saying it's vit d and it doesn't feel right to me.

It's affecting raising my kids, and me being at work

Thank you in advance.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

We are not medically qualified, so unable to comment on whether your symptoms are related to low vit D or fibromyalgia. You may find it useful to keep a pain /symptom diary for a couple of weeks

[Sebbybabybucky in reply to Hazel_Angelstar]

Thank you for your welcome. I'm not asking for medically trained professionals on here to answer me, I'm hoping, as thousands of people have engaged with others on their worries, someone might have, or be in the same situation.

[Camille1]

Hi, I was initially diagnosed with vitamin D deficiency (my level was 13) after seeing my GP for constant pain in my ribs. I had the intense dose and several weeks later my GP expected me to be feeling better. When I said nothing had changed, he asked me about other symptoms and examined me and suggested fibromyalgia - it had never crossed my mind it could be that. Looking back, I realised I'd started with symptoms a few years prior - with my previous GP doing bloods that came back neg, and said I was "too young" for it to be anything and that I was just working too hard! (I was 33 then). Hope this helps.

[fmlife]

I have low iron so on fluid iron,

and eat chestnut mushrooms for vitamin d, drink almond milk with the added vitamins.

have had hands, wrist and slightly lower than elbow pains, plus all the rest, I do have fibro. was told was text book however never asked which text book,

Am also on a gluten free diet.

arthritis-health.com/types/...

the wrist pain was thought to be carpal tunnel, however after the electric shock test, which do not recommend if highly sensitive, they decided it was fibro. however still have to wear the splint thingy.

I try to keep warm and flexible.

gentle hugs

[looloo4007 in reply to fmlife]

Hi there sounds just like myself pain and pins &needles in my hands pain goes right up my forearms it’s worse the next day if I do too much I’ve been referred to have nerves checked I hope it’s not an electric shock test like you said geez 😒

[fmlife in reply to looloo4007]

am very sensitive, perhaps you will not be notice it.

if not know there are exercises saw on the ytube, ask your doctor for advice first on whether should try them or not.

[Elizahl]

Firstly it's not vitamin d causing that everyone is short vitamin d due to weather this part of the world and not getting out enough. You need further investigations carried out to rule out other causes. I had mri and ct scan when I forst had issues but I lost complete power in legs and arms so maybe because I was more severe I am not sure but at the very least I would expect a specialist referral. I would not accept its just low vitamin d without a proper investigation.

[Healthyheart1]

Hi, you have obviously done what the doctor told you. If nothing has changed or your getting worse then please go back to the doctor or have a telephone conversation with them. The other people on here have given you some more sites to look on and remember it's your body and you know what's right for you. Hope you get some help soon. Sheena

[moo196]

the absolute best thing I have ever done wrt pain is to give up diet coke and absolutely everything else with artificial sweeteners in.Much more difficult since the sugar tax. Need to check everything from yoghurts to ketchup and even the tonic water for my gin.... 😅

But worth a go?

[fmlife in reply to moo196]

if your ketchup is unsuitable to eat if not wanting artificial sugar.

do a search online may be surprised to learn its a great overnight cleaner! have used on a stuck screw threads that would not release. 👍

[1whitestar]

This sounds so like what had started with me since April last year. July I was diagnosed with fibromyalgia then inflamtory arthritis. I take duloxtine 60 mg for the fibromyalgia that has stopped all the pim pricking what I was getting. Naproxen I take and also sulfasalazine for my arthritis. Get a second opinion I would.

[1whitestar in reply to 1whitestar]

I have felt very drained so tired. I have fibro and inflamtory arthritis. I am on duloxtine and sulfasalne for arthrits. But i have to wait to the end of june for it to take effect. Im feeling down and what else is there i know i sound selfish before all this i had a job i loved a carer i was bike riding i could walk far. And now i can not even do any of that now i am signed on to esa as my sick pay has ran out. Pip has turnt me down twice now i have to wait for my case worker.i would like some advise will this get better ? And if anyone has had these tablets have they worked. Also i have bean accepted for a blue badge due to the walking. I am 41 and need help with cooking dressing etc has anyone had to get a mobilty scooter to help them. Or should i push and push myself .

[Kariss]

Hi, I have fibromyalgia and what you are experiencing sounds to me what is called a flare. This is a reaction to something which has triggered an inflammatory response in your immune system. It could be from a food or an illness or injury, or stress or even something in the environment and can be very painful and last any amount of time. I’m talking from my personal experience. I was initially diagnosed with rheumatoid arthritis (which can be very similar), but as I responded poorly to all the RA drugs I was given over a period of 15+ years, my diagnosis was changed to psoriatic inflammatory arthritis with fibromyalgia. Unfortunately the help offered for fibromyalgia tends to be mostly pain management with pain killers plus the use of mindfulness techniques such as meditation, yoga, various diets and antidepressants such as amitriptyline. I would suggest you keep going back to your doctor and ask for further tests and more information on how fibromyalgia affects you as it sounds like it is impacting on your quality of life, and you need some answers. It is a tricky illness to understand. Good luck, I hope you get some relief soon.

[Aka-Ice]

If fibro is in your family it my be the case you also have it. I have had every test under the sun and been told my fibro was everything but. Took 3 years to get diagnosed few weeks ago so tell the doctor what you think it is and keep pressure on them. I have a sister how has had fibro 10 years and just found out my other sister has it also. It is more prominent in women unfortunately and there is no direct test for it. They have to rule out everything else before they can determine it is fibro x