Fibromyalgia or vitamin D deficiency? Or both??

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Hi guys bear with me I'm new to forums. Okay so I'm feeling really down at the moment due to chronic pain. I was diagnosed with fibromyalgia three years ago but can't tolerate all the medications such as gabapentin, pregablin and amitryptyline so I'm basically just taking solpadol 30/500s and tramadol 50 mg if it gets really bad.  I've now been diagnosed with severe vitamin D deficiency and all they would tell me it was below 20 so I've been started on 60000 units of cholecalciferol per week. I'm now getting sharp pains in my feet which I can only describe as a cross between a bee sting and an electric shock in my heels and feet, and a constant ache of calf muscles and bad bone pain to my shins. Everything is getting me down

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4 Replies

  • Posted

    Hang in there, Heather.

    I was also diagnosed with so-called fibromyalgia 6 years ago. I am two months post-vit D deficiency diagnosis. If you look up the symptoms of osteomalacia (which is the skeleton-softening condition caused by vit D deficiency, sometimes known as 'adult rickets') you will see exactly why you feel so awful. The knock on effects also cause muscle wasting which adds to the fatigue, weakness and poor balance. 

    I wish I could tell you that it all gets better after a couple of weeks of supplements, but I'm two months down the line, clinging to my reduced hours job by my fingernails and trying to adjust to the fact that I have a serious illness. GP guidance is that the skeleton will remineralise in 3-6 months, but Dr Michael Holick who is a leading vitamin D researcher suggests that it is likely to be nearer to a year.

    One thing I have learned from this is never to accept a diagnosis like fibromyalgia again. It just left me open to being sidelined by doctors when they should have been looking for a cause and a cure for my symptoms instead of suggesting a condition with no known cause or effective treatment. So, weirdly, I was grateful for the vit D deficiency osteomalacia diagnosis because at least it is a real condition with a real etiology and a real treatment. 

    My advice is to be good to yourself, research the consequences of vit D deficiency /osteomalacia (Dr Holick has a couple of really interesting lectures on Youtube), rest and forget the idea that you're going to be climbing Ben Nevis in two weeks. It's a serious condition and recovery takes time.  

    All best wishes. 

    • Posted

      Thank you Jaybelle! I'm demented. It's been going on for a while now but more recently I've felt a lot worse, seem to get new symptoms every day newest being extreme cold to hands and feet , my husband says I have a weird body!
    • Posted

      Vit D deficiency can cause serum calcium levels to fall very low, as calcium is pumped out of the bones (instead of the usual in/out balance). This hypocalcaemia causes the muscular and temperature symptoms of D deficiency:  Tingling or numbness in the hands and/or feet; Tingling or numbness in the face especially around the mouth; Irritability; Brain fog; Tiredness; Headache; Diarrhea; Twitching or trembly muscles; Sudden temperature drop. 

      Any of those sound familiar? My advice would be to ask your doctor to check your calcium levels to find out how low they are and take a good calcium supplement. The hypocalcaemic symptoms are just part of the raft of consequences of D deficiency, and should resolve over the net few months as your D levels rise into the normal range and your body starts to behave more normally. It's a huge issue for me, too, but I'm looking forward to having hands and feet this winter that aren't permanently blue! 

    • Posted

      Hi Jaybelle my levels are below 12 that's all they said ive been started on 60000 units of vit d per week. Yeah I pretty much get all those symptoms but it's the pain that bothers me most. Oh and I get numbness fell down the stairs once because I couldn't feel my legs and feet. Get neuralgia in my face too the joys!

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