Vitamin D deficiency & Fibromyalsia

Discussion in 'Fibromyalgia Main Forum' started by momof3inks, Jun 27, 2009.

  1. momof3inks

    momof3inks New Member

    I was diagnosed with a low vitamin d level of 20 recently. I also know a few other fibro friends who also have low vitamin d levels. Does anyone know why this is? What causes the corollation between vitamin d deficiency and fibromyalsia?

  2. cathugs

    cathugs New Member

    I had lab work done 2 weeks ago and my D level was down to 25.
    I am now taking 50,000iu of rx vit. twice a week and 2,000 iu. over the counter every day. No wonder I feel so tired.
    The dr. told me that one lady he sees had a level of 6. I don't know how she was even walking.

    I am never out in the sun because of all my meds. About every one says to stay out of the sun. I can be out for just a minute and can feel my
    skin burning.

  3. kjfms

    kjfms Member

    I am just tossing out my own opinion.

    Based on the research and speaking with my physician. I do not feel there is a connection between Vitamin D deficiency and Fibromyalgia.

    My level was 12, when we first checked. I have been on 50,000 International Units IU for several months and it is helping my energy and stamina quite a lot. It is just a slow process.

    My physician wants my Vitamin D level to be at least 50, I will be testing in a month or so to see how the level is doing.

    The only thing I can think of is lack of sun, many Fibromyalgia Syndrome (including me) do not get a lot of sunshine. I am only speaking for my self and a few friends who also have FMS, one of whom has excellent Vitamin D levels and she is in the sun no more than I.

    Good luck on getting your levels up,


    ------This is only my opinion.
  4. cfsgeorge

    cfsgeorge New Member

    low vit D is not only seen in FM. It is just one of many nutritional deficencies seen in FM and other chronic diseases. For example, low vit D levels are universally seen in all MS patients.
  5. holiday16

    holiday16 New Member

    I had it checked a few years ago and it was 21. Used drops and got it back up and over the past few years if I don't take D on a regular basis to keep it up it falls back down. This is even with being in the sun alot, almost never using sunscreen (except on my face and after being outside for several hours ) and I have fair skin. Talked w/ my Dr. and this shouldn't be happening and for some reason I can't keep my D levels up unless I supplement on a routine basis.

    This is common w/ celiac, but I am on a strict gluten free diet. Given my history my kids will be getting their D levels checked as well.

    It was assumed that I wasn't getting enough sun at first, but one year I went to CA, SC and spent all summer in the garden and outside w/ minimal sunscreen and *still* had low D so that's not the problem! Have to keep supplementing and routinely get my D levels checked.
  6. momof3inks

    momof3inks New Member

    Thanks for all of your responses! It does make me feel better to know that I'm not the only one who has low vitamin d. Ive been on Vit. D for 1 1/2 and really don't see much difference except I don't twitch as bad at night like I use to. I see a Chiropractor who does a special active release chiropractic method...he told me my twitching was probably due to the low vitamin d levels.

    Many wishes to all of you who are fellow sufferers to this horrid condition!! (can you tell I'm a newbie? ;) diagnosed 2/09)
  7. mrlondon

    mrlondon Member

    Twitching is a known magnesium deficiency symptom, and magnesium deficiencies are very common.
  8. jaded_lady

    jaded_lady New Member

    My Vit d was about 12 a year ago, I took 2 months of 50,000iu of Vit D and got the leve up to 40. The Dr didn't prescribe more or say lets check it in a month or so.

    This June I was tested again and it was 5.3. My fibro pain; mental confusion and fatigue have been horrible.

    So I think the connection is when the vit d is low; the fibro symptoms increase dramatically.

    Research has led me to believe we should seen and endocrinologist if we have chronic low vit d levels. The parathyroids may be messed up.
  9. TigerLilea

    TigerLilea Active Member

    As we get older our bodies don't make as much Vitamin D as when we were younger. During the winter months if you live north of Atlanta, the sun isn't strong enough to produce Vitamin D. If you are avoiding the sun, or wearing sunscreen during the summer months, you won't produce as much Vitamin D. Also, for anyone who is dark skinned, that is the equivalent of wearing an SPF 50.
  10. mmztcass

    mmztcass New Member

    am still not able to get enough sun! It gets so hot out during the middle of the day that the only good time to come out to the sun would be before 9 AM and after 5 PM. I suspect there are a lot of people low in Vitamin D here as well.

    Take care... :)
  11. holiday16

    holiday16 New Member

    when I was found to have low D it was through a phone consult with an NP that lived in another state. Her assistant called and they were mailing me some D and said until it came to go out in the sun 15 minutes a day. I told her I was in Ohio (it wasn't summer) and there was a pause and then,"oh....nevermind", LOL.

    The interesting thing was being from Ohio was part of what made the NP to think to test for D (this was before all the news on it) because she had recently read a study that was done in Ohio on low D levels because of the lack of sun in this area in the winter months.
  12. Mar19

    Mar19 New Member

    I just got my labs back and my Vit D level is down to 9. The low side of normal is 20. By B12 is in the very low normal range again too.

    I've been feeling absolutely horrible for the last 6 months, perhaps as long as a year.

    It can't be as easy as getting out in the sun for a short period of time each day either, because I have forced myself back to my garden, which is something I dearly love but have not been able to tend to for at least 5 years now. If my Vit D level is at 9 after being in the sun for the last 2 months, I don't want to think what it would have been during the dead of winter. OK, I've not been out for hours ever day, but enough to get *some* sunshine.

    Those of you who are taking the mega doses of Vit D -- is it safe? I know D is one of those vitamins that is stored in the fat -- it's not water-soluble -- right? I don't want to cause yet another problem by building up a D toxicity -- if that's even possible at this point? Comments anyone?

    Love and blessings
  13. holiday16

    holiday16 New Member

    B12 and D are both things that are commonly found to be low in celiac. Iron is another. Has your Dr. tested you for that? Our entire family was tested and long story short even though everything came back negative the dietary response was so great (and the genetic test so strong in some cases) Drs. are all in agreement that it is an issue for all of us. My response is mostly neurological and it is pretty amazing what it can trigger. is a great place to check out to learn more.
  14. whywyoming

    whywyoming New Member

    How do you find out your Vitamin D levels?
    I actually supplement even though I have no idea if I am low in Vitamin D or not.

    Most of the time I am pretty functional (tired, achey etc...but work part time, have kids, even manage to take Taekwando), but the spring has been really rainy and my symptoms were intensified; I was seriously thinking about giving up Taekwando even though I've been in it for two years and feel like overall it helps. I'm not sure it was the weather but now that the sun has started shining and we aren't having the rain I do feel better. Do you find that your Fibro is episodic in nature? I do have some pain all of the time and most of the time it is manageable but I have periods, sometimes of a few months, where it gets pretty bad. Is that typical?

    I've been diagnosed for over a year but haven't talked with anyone else who has Fibro so I am full of questions. I take Cymbalta and Welbutrin right now. I've been on Lyrica (gained weight like crazy and it didn't seem to help). I take ultimate cleanse all the time to help with my IB symptoms and it does help; and I take Flax seed oil and Vitamin D. Also have a stems machine that I use and it helps quite a bit. Is anyone else taking something supplement wise that helps them?

    And finally, how do you tell the difference between fibro stuff and regular everyday illness and injury? Sometimes I feel like I am just lumping everything into one category and so I don't know if it is something to follow up on with a doctor: for example shoulder pain that feels like a rotator cuff problem.

    Sorry if this is too long.
  15. TigerLilea

    TigerLilea Active Member

    Yes, taking Vitamin D3 is safe. Just be sure to get a blood test done a couple of times a year, especially in the first year or two. Also, your doctor should be checking your calcium levels to make sure that they aren't getting too high. If you labs showed you were at 9, then you have a long way to go to get your levels up to optimal.