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Vitamin D deficiency and Fibro

Posted , 10 users are following.

clurbur
clurbur

Hi,

I just wondered whether any of you were diagnosed with vitamin D deficiency at some point along your fibro journey?  

When I was being tested this time last year one of the things that was noted was how severely deficient I was in Vit D.

No surprise really, I think most of the country suffers, but with it effecting joints and bones my Rheumatologist said it was important to manage.

I was put on a 4 month heavy dose to boost my levels and then a maintenance tablet to last me until summer. My GP thought by summer the sunlight levels would be high enough to get the vitamin without supplement.

We're now back in January and its no better than it was originally but this time it hasn't been suggested its managed!

Are any of you on a permanent maintenance dose?

Do you self manage this with off the shelf vitamins or get the prescribed ones (which seem to be bigger in dose).

Do you see a benefit pain / joint wise or is it still masked by your fibro and other health conditions?

1 like, 16 replies

16 Replies

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  • Carinaeta
    Carinaeta clurbur

    Posted

    Hi Clurbur, yes, same as you, I had literally no vit D, so had a heavy dose to establish that I could absorb it and following that was advised to take vit D every day. I wasnt told sunlight levels would mean i didnt have to take a supplement, I was told to take supplements forever more so I take a multivit tablet every day which has 100% RDA for Vit D. I do see a benefit in that I dont get as many colds/minor ailments but I suspect thats related to vit C. I was told that Vit D deficiency is v common in UK and altho symptoms of deficiency is muscle pain, if you continue with muscle pain once Vit D is up to a good level then the muscle pain isnt caused by a Vit D deficiency, hence I just take a multi Vit for my general health really. 
    • clurbur
      clurbur Carinaeta

      Posted

      Hi,

      I think there is a certain element of cost cutting with me not having a summer dose!

      I'm thinking it's got to be better for your wellbeing just to take it everyday than be up and down so dramatically.

      I haven't suffered with any colds or infectons since I gave up work so my cure for that isn't vitamins it's staying away from germy people lol.

  • sha1271
    sha1271 clurbur

    Posted

    I wasn't considered deficient but my D levels were very low so we're my B12. Im taking 2000 IU of D3 daily and 5000 mcg og B12 daily, I alsi taje calcium magnesium and zinc. The calcium is supposed help your body absorb the D. I have noticed a difference in pain but dont know how long it takes for levels to get up. I have been having horrible arm and shoulder pain and weakness and nothing it's helping.
    • clurbur
      clurbur sha1271

      Posted

      I'm sorry to hear about the shouder pain, having just had a shot of corticosteroids in mine I know how awful it is.

      I shall have a look into the other vitamins as it might just be better to go down the multi route instead of selecting what and when I think I need more than D3.

    • gillian81509
      gillian81509 sha1271

      Posted

      This year my shoulder and arm pain is at screaming level

      tramadol is keeping at bay

    • sha1271
      sha1271 gillian81509

      Posted

      I dont know why this year has been so much worse for me. My carpal tunnel pain startes getting worse then my arms and shoulders. The dr finally wanted to rule out RA and thats when I finally got a diagnosis for fibro. Im relunctant to take pills but over the counter meds were no longer helping. I cant seem to find anything that helps the arm pain. Im on gabapentin and thankfully that keeps the headachea away. My dr could only give me 8 tramadol so I finally tried one the other day because pain was unbearable. It did not do a thing. Decided to try again today and its just made me feel a little loopy and not caretoo much about the pain. My pain is only about a 5 today though. Im getting at my wits end now. I just ccan't tolerate this pain any more and worried its just going to get worse.

      Anyway sorry for going on and on. I do hope that I start noticing improvement once my vitamin levels get higher.

      I hope we all start feeling better soo..

      Shari

    • anne90395
      anne90395 sha1271

      Posted

      Hello Shari,

      Just wondered why you haven't had the op to cure your carpal tunnel syndrome. I did many years ago and it was 100% effective cure.

      Take care, Anne

    • sha1271
      sha1271 anne90395

      Posted

      Hi Anne,

      It's never been brought up as an option. They just send me home with wrist braces to wear. Idk if they don't feel its severe enough or because of my insurance.

    • tiswas24537
      tiswas24537 sha1271

      Posted

      try buying magneisum oil and rubbing in to the area that is painful 

      and try doing some hand excersises to stretch the tendons 

      look for alternatives for treating carpals tunnel there are several with could results . magneisum oil is the only one i can think of .

      good luckcool

    • anne90395
      anne90395 sha1271

      Posted

      Hello Shari,

      Sorry to hear that, in Uk if you have it, you need the op, only way. Hope you can convince/persuade that is what you need to do. Good luck

      Take care, Anne

  • fibrohk
    fibrohk clurbur

    Posted

    Hi Clubur, I've not had my Vit D checked as yet (might do) However, my sister recently went to GP with general soreness in most muscles - worse when her daughter gave her a 'special hug'. She thought she might be developing fibro like me. Bloods showed her Vit D level very low - got prescription for Vit D and (higher strength than over the counter) and she actually noticed difference within days, not on permant though. Sets you thinking eh!
    • clurbur
      clurbur fibrohk

      Posted

      Yes my friend had that same incident after she had her second son. She thought because she was carrying a baby in her arms as well as holding her toddler she'd pulled something.

      Her bloods showed low levels of Vit D n she started treatment and within days felt so much better, toddler cuddles were no longer an issue!

      She couldn't believe something so small had made such a big difference!

  • tiswas24537
    tiswas24537 clurbur

    Posted

    my doctor tested me when i complained of pain in my toes 

    and i was told that i was vit d deficant

    he told me to get my own because they dont prescrib the right kind

    you need vit d 3 . thats only what my GP told me the pain did reduce in my toes razz

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