CFS/ME and vitamin D deficiency?

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Hi everyone, I was diagnosed with CFS/ME a year ago and since having surgery last November it has got so bad that I am unable to return to my job sad I am only 22 and it's really making me upset.

I have had all the blood tests available and all came back negative apart from today my doctor called and said I have a vitamin D deficiency and has given me 3 months worth of medication. Has anyone else with CFS/ME got a vitamin D deficiency? Also did supplements help your CFS? Or even cure it? How long did it take for you to feel better?

Thank you 😊

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15 Replies

  • Posted

    Hi

    I had the same problem with vitamin D last year and had 3 months worth. I did find it impacted slightly with the cognitive aspects as I kept saying "I  can't think straight" but not significantly in the way you are inferring. But all helps and of course we are all different so you may have more changes than me. 

    Best of luck!

    Paz

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  • Posted

    Hi Lau,

    My friend who has cfs/me had vit d deficiency and took the 3 month course and vit d is back within normal range again, whether it has helped is a tough one, they also started with hrt medication and iron supplements at the same time. They feel some improvement with the brain fog issues. They still have cfs/me and I think its hard to tell what exactly helps when you are trying different things?

    Hope that helps

    Beverley

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  • Posted

    I have vit d deficiency, gp told me to take a supplement which I do daily. Feeling much better but don't know how much it has contributed
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  • Posted

    HI Yes i have CFS and was also vfound to be vit D deficiency, tablets helped a bit with aching legs but thats all im afraid, however doenst mean to say that there arnt other benefits that we cant necessarily feel

    Sue 

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    • Posted

      Sorry to hear they didn't help much with your CFS! The pains in my legs are unbearable at the moment, I also get them in my arms and lower back! My doctor was starting to think fibromyalgia aswell but now I'm thinking it's probably to do with low vitamin D.

      How long did you take the vitamin D tablets for? X

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  • Posted

    I was very bad when I first got sick, bedridden. After 3 or so years I started to come out of it but I was still to sick to return work. And I knew if I went back to a work schedule I'll just crash again from over doing it. Today I take care of myself, try to pace myself and sleep every afternoon.

    I haven't had low vit d but my potassium was dangerously low when I first got sick. I went to see a specialist a few years ago. (I was recommended by Dr. Tattelbaum that wrote from fatigue to fantastic). I was put on vitamins and I'm still on them. I can feel the crash if I stop taking them a few days. I'm taking CQ 10, seleium, vit c, vit E, multi vit. I've added to it over the years but that's what he recommended. Also magnesium.

    Hope this helps

    Bonnie

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    • Posted

      Hi boni,

      I recently been diagnosed with cfs and have been suffering for a year. I was wondering with the supplements that you are taking has it helped with your symptoms.

      Have you been able to return to functioning normally? I barley can do basic things on a daily basis, the fatigue can be very overwhelming.

      I hope my body can recover from this eventually. Some days I wonder if this will be for the rest of my life, very distraughting.

      Hope you are recovering.

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  • Posted

    According to posts I've read on this forum, many of us, including myself, hare a vitamin D deficiency. I take vitamen D supplements, but they haven't helped with my ME/CFS. One of the hardest things about this illness is the uncertainty. There is currently no treatment, and there are no biomarkers. So there are not even any tests that confirm the presence of ME/CFS. I think that the best you can do is to pace yourself and not push through the fatigue. This can result in your getting a lot worse. It happened to me. But there's a lot of hope for you. Since you've had the illness for a year, you're well within the time envelope (5 years or so) where you could get better. Also, your age is in your favor.
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    • Posted

      Yes I have done some research online and have found a lot of people with CFS/ME have low vitamin D, I wonder why that is? How long did you take the vitamin D supplicants for? I'm going to give them a good go and hope for the best but by talking to other people it doesn't sound promising sad.

      How long have you had ME for? I've had it for 2 years now but was only diagnosed last year after going through all the elimination tests. I do pace myself, I'm not able to do much at all at the moment anyway so I lay down most of the day x

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  • Posted

    I take 3000 Vitamin d3 daily, developed a deficincy about 8months ago but blood tests are still saying its low, they are thinking about taking it injection form after my last blood test, it's just another thing we put up with,
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    • Posted

      Sorry it's not working well for you, hopefully the injection form helps you more smile does your ME feel any better since taking them? I also don't understand how I could be low in vitamin D as I don't come under any of the 'at risk' criteria for getting it! X
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    • Posted

      Do you get out in the sun but are covered up? In the winter where is the sun!!
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    • Posted

      Hi lau,

      I know it's been over a year but I was wondering how you are doing? Did your vitamin d deficiency resolved? Did it help with your chronic fatigue?

      I am going through the same thing right now. Low vitamin d and doctors think I have chronic fatigue. I can't help but wonder if these two symptoms overlap each other.

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    • Posted

      My blood tests still come back as being low with Vit D,I still take the vitamins but not really been any help. The D-ribose powder has been the brilliant for helping, obviously everyones bodies are very different and diferent things work.

      Hope you find something 

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  • Posted

    Different supplements, including vitamin d, may help different people.  What I do is go through each one for six weeks and see if it makes a difference.  If not, I stop that one.
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