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Vitamin D

Posted , 8 users are following.

sandy67
sandy67

This is a really important question and could change your life!!! I have suffered with fibromyalgia for many years, spent 18 months practically bed bound recently - almost lost my house during this time - could barely get to the loo without help, needed someone to squeeze the toothpaste, the shower gel, etc etc.  I have recently discovered that I am vitamin D deficient, severely!  I started taking supplements years ago when it was discovered after I visited the GP with mouth ulcers, but it wasn't checked AFTER I took it.  I requested another check a couple of months ago after doing a lot of research on vitamin D deficiency and, you won't need 3 guesses I am sure!, it was still showing very low.

Vitamin D deficiency causes all of the symptoms of fibromyalgia.  I was never happy with my diagnosis as it seemed to me that every other person I spoke to (ok maybe a slight exaggeration!) had also been diagnosed with this and our symptoms were nothing alike.  If you do a little research yourself, you will, no doubt, see immediately that some, if not all, of your symptoms are listed. I am certainly not trying to diagnose you, I am no doctor, but I am willing to bet that a large percentage of us are also vitamin D deficient.  I am still under investigation to try to find out why my body is not appearing to absorb vitamin D (as I do all the right things - get out in the sun as much as possible as I just love the sun, eat oily fish, loads of eggs etc., as well as take supplements), but my GP has agreed with me that this could actually be the root cause of all of my problems, including depression and some cognitive issues.

So - my question - have you been checked for vitamin D deficiency? - and if not, please do!  You will see when you do your own research that people with this deficiency are often misdiagnosed with fibromyalgia.  Its not the fibromyalgia that causes vitamin D deficiency either, its the vitamin D deficiency that causes the symptoms we have all been told is fibromyalgia.  I urge everyone to look into this and demand to be tested, it could be the turning point you have been dreaming about!!

0 likes, 17 replies

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  • JulieBadger
    JulieBadger sandy67

    Posted

    Hello Sandy67,

    ​I too had my Vitamin D levels checked about 4 months ago.  My doctor said she had only once seen levels as low as mine before.  I scored 18, the lowest you are is supposed to be 50.  I was put on extremely high dosage for 10 weeks and I now have to take everyday a dosage of 500 (twice the recommended dosage).  I believe I will now have to stay on that dosage forever.  It is obvious my body can't create it's own Vitamin D levels.

    • sandy67
      sandy67 JulieBadger

      Posted

      yes, but they should be trying to find out why surely?  there are certain things that stop us absorbing it and they should be investigating these.  Coeliac is one of them and colitis I think. I wondered about coeliac for many years but tests showed its not that, although I know that when I don't eat bread I feel much healthier! So I am going to try to follow a coeliac diet just to see for myself once all these tests have been done, not worth doing it until cos they won't get proper results.  Some people actually believe we need to take 10,000 units a day  to stay at good levels! is the 500 you say mg or units? x
  • Casper4081
    Casper4081 sandy67

    Posted

    That was one of the first tests my doc did. I was at 17 & was told the minimum was 30. I take 4 d`s a day. Initially I had to take a 3x of a mega dose to get my levels up. This was a 6 week course. I'm still tired all the time. I go next week & I'm going to have her check my levels again.
    • sandy67
      sandy67 Casper4081

      Posted

      Hi Casper, I have just finished the 6 week course of 40,000 units weekly and go for my blood test today, I am certain that it hasn't made any difference though as I am still getting severe head sweats! this was the reason I discovered it was the vitamin d deficiency in the first place, well, after the initial discovery many years ago cos of mouth ulcers that is.  I suppose the difficult thing is to find out why we are not absorbing it! good luck! x
  • janet01833
    janet01833 sandy67

    Posted

    My vitamin D level didnt even register on the chart. You could be on to something. Maybe we dont have the ability to absorb it..? Therefor we have these symptoms. I take a supplement every day but I still havent felt any better.

    Its worth looking into. Thanks for sharing!

    • sandy67
      sandy67 janet01833

      Posted

      Good luck Janet, I hope you get things sorted. I am really hoping that they can find out the reason for not absorbing it.  I think that's the way to go now. Not enough research has gone into fibro, but there's a lot being done now with vitamin D.  Deficiency causes anawful lot of symptoms, can also cause dementia so its really important that they put more into this and for us to demand they keep checking levels and look into it x
  • Trev1264
    Trev1264 sandy67

    Posted

    Yes I was diagnosed with this over three years ago and take two big chewable tablets called Adcal-D3 1500mg a day, I'm not sure if they do anything because I still feel the same as I did before I started taking these tablets.
    • sandy67
      sandy67 Trev1264

      Posted

      Trev that's what I have been taking for a few years now, but when I asked for them to be checked again, even on the pills, they were still VERY low, so have been on a 6 week course of very large doses, 40,000 units a week.  I will find out in a few days if there is any change, but i do not expect to see any, as my head is still sweating profusely and I do not feel any better, so now I am hoping they will look into why I am not absorbing it, as this appears to be obvious.  Ask for another test to see if your adcal is working.  I wouldn't mind betting that it is not! x
  • loxie
    loxie sandy67

    Posted

    Hi Sandy

    Thanks so much for your post.  I too was amazed at just how many people seem to be getting diagnosed with fibromyalgia - I thought it was some kind of epidemic to be honest!  I've battled my doctors against them labelling my problems as fibro - because it seems once they do, they write you off with dodgy prescriptions for nasty painkillers or anti depressants and tell you to get lost.  I vehemently have refused to believe that giving something a made up name of a diagnosis because they cant be bothered to delve deeper to find the real cause is of any use whatsoever.  The word fibromyalgia is an artificial joining together of two terms - fibro = fibrous tissue and myalgia = unspecified pain.  How ridiculously unhelpful is that?  

    I was taking vit D3 supplements but my doc was unconvinced they would be of any help.  Since reading your post, I'm going to DEMAND a better explanation and DEMAND to have my recent blood tests looked at properly and explained to me, including asking whether or not I was tested for vit D levels and if so, explain to me what the results mean please.  

    I totally agree that there may be misdiagnosis of fibromyalgia - it's an 'easy out' so to speak and lets them tick a box that another patient has been dealt with - without more effort to find a true cause.

    Thank you again

    • sandy67
      sandy67 loxie

      Posted

      Yes, you are right.  It seems that when they can't come up with any other diagnosis they label us all as fibromyalgia.  It is a cop-out.  I have always said it, and never been happy with it.  After researching about vitamin D deficiency I am now convinced that this is the real culprit!  Look it up - you will see that you have a lot of the symptoms and yes do demand they check your levels and look into it properly for you!  Please let me know. It is time we started demanding more from these so called "specialists", cos it seems to me that the rheumatologists only specialise in rheumatoid arthritis and if you don't have that then they say its fibromyalgia cos basically they don't know what else to tell you! 

      Good luck! x

    • bronwyn97278
      bronwyn97278 sandy67

      Posted

      Hi Sandy and others;   I have read all inputs (even re the sunbed, which I don't really like the idea of)........yes there is a lot re the Absorption of Vit D.....and the other answer is when we Don't have enough Calcium in our bodies, this affects our Breakdown of Vit D into our systems/cells etc.....the one thing that I was going to suggest, is if oral supplements is not enough, then Vit D can be given as IM/IV injections/infusions, and This is then very easily absorbed as it is going straight into our muscles/blood.....I did have my Vit D checked, too.....but was not told re any abnormalities, but will ask again, when I next go to GP.............thankyou for this, as Yes, it is very important discussion..........Bron
    • sandy67
      sandy67 bronwyn97278

      Posted

      Also some doctors don't realise that when your vitamin d is low and your calcium levels are high, it is because the calcium is actually being taken from our bones, as without enought vitamin D our bodies cannot make calcium, soit has to take it from somewhere. If they are over the normal levels, it is because it is being taken from our bones, so that is another thing to be careful of xx
  • sadie1980
    sadie1980 sandy67

    Posted

    I to had low vit d b12 folic and iron ! I still have low iron but everything else is back to normal still have pains though 😢
    • sandy67
      sandy67 sadie1980

      Posted

      I know it won't be the case for everyone that has been diagnosed with fibromyalgia but I would put money on it being the case for a lot of us.

      I hope you get some relief soon and make sure you keep getting checked.  You may need injections for b12.  My iron levels are low too even with ferrous fumarate.  I haven't looked into that one yet, just the vitamin D deficiency, but there is definitely something in it, not being absorbed x

    • sadie1980
      sadie1980 sandy67

      Posted

      I def agree something is not right for most of us to be honest x
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