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Vitamin D deficiency or is it Fibromyalgia? Or both?

Posted , 3 users are following.

nichan1983
nichan1983

Hi,

Here's my story il try to keep it brief. On the second of January 2017 I woke up in the worst state of health I have ever been. It suddenly happen over night and I have never felt so awful in my life. It started with extreme tiredness and burning pins and needles all over and I could barely walk. At first I though it was some awful virus. Dr thought maybe an allergic reaction..... no idea what to as nothing I had was different from normal etc. Any ways I got given steroids and anti allergy medication which did nothing. I rapidly got worse extreme pain all over it was in my muscles and it felt like my Skelton hurt. I was getting leg spasms at night. Sharp stabbing pains randomly in different parts of my body and at night when I lead down on a few occasions I sudden feeling of an electric shock to the heart. Freaked me out. After many, many blood tests the only thing that appeared was I was vitamin D deficient I was at an 8. This is when I discovered how clueless Dr's are about treating vitamin D deficiency. I was orginally given a much too low dose but eventually got put on 20,000 iu for a few weeks. I'm now on 800iu daily. I was still in a bad way especially the pain it's unbearable. I was put on all sorts of awful medications whilst the GP was refuring me and trying to figure it out. I didn't take the pills for long as the side effects were hideous. Eventually after seeing specialist at the hospital and rheumatoid arthritis being ruled out I saw a pain specialist. He diagnosed me with Fibromyalgia but also pointed out I'm the first patient he had come across to just wake up with it. Reading people's symptoms and recovery is making me wonder if it is just vitamin D I've never wanted to accept the fibro diagnosis. And it seems Dr's don't follow up the voting D deficiency etc and mine had dipped again beginning of the year. The only thing that ever helped me was cbd oil but unfortunately after a time stopped. All pain killers of any strength do nothing. I'm living in a lot of pain with zero support from any medical professionals. I've even told my GP I'm struggling but no one seems to care. Since falling ill with this which has been life changing especially as I have 2 young children, I have been disgusted with the health service. Can anyone relate? Plus advise on the vitamin D if there's a best way to recover etc. Thank you so much. Sorry for rambling

0 likes, 4 replies

4 Replies

  • ashley45849
    ashley45849 nichan1983

    Posted

    800 iu is too low of a dose. There are groups on Facebook just look for vitamin d deficiency. They are very helpful. But it takes a good while to get your levels raised to where you will feel better. I wish you the best of luck. 
  • hope4cure
    hope4cure nichan1983

    Posted

    Ask to see a rhumy for second opinion. They can help you manage FM. I sympathize with you it tough when all of a sudden our health takes a different path . Don't give up push for answers .

    there are meds that can help manage FM. diet and exercise is helpful .

    glad to see you here. support is helpful and encouraging. Take one day at a time it's an adjustment . 

     

  • nichan1983
    nichan1983

    Posted

    Thank you both. I've thankfully finally found a GP who actually wants to help me. I see him in 2 weeks fingers crossed I get somewhere with it all. I did wonder if the 800iu was too low. I'm not on Facebook but will bring this up with the GP smile

    • ashley45849
      ashley45849 nichan1983

      Posted

      The Facebook group suggested that you follow the protocol. Take magnesium (not the laxative kind) and vitamin K2. Also take vitamin D3. The K2 is to help the calcium go to your bones and not arteries and soft tissue and the magnesium is to help absorb the vitamin d I believe. To figure out your D3 dose they say 62-74iu per pound you weigh or at least 10,000 iu daily of D3. A lot of the doctors don’t know enough because they do not learn nutrition in medical school. There are functional medical drs that do know more. I did see one and she said at the place I am to alternate 5,000 iu one day and 10,000 iu the next and so on and so forth. But I still have a good ways to go. I wish you the best of luck. Please keep us updated. 
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