I have recenlty discovererd after trial and error that vitamin D3 supplement is bad news for me. It has been the only variable- started it symptoms flared- stopped it they calmed down, and did this twice 6months apart. It is bizzare and hard to understand, but it very definatley causes some kind of flare. Join pain gets worse, i get chilblains on my feet, and other symptoms.
Has anyonelse had this??? dOes anyone understand why? the only thing I have been able to find is Marshall, everything else seems to say vitamin D good. However accoring to marshall the sun is bad too, but i do not get these symptoms with sun exposure, just the oral supplementation. if anyone could shed some light that would be greaaaat!
thanks,
jasmine
Yep, me too! I don't know that I can shed much light on the why, but my ME symptoms definitely get worse when I'm supplementing vit. D.
My last trial with supplementation was a small dose of equilbrant which I described in these two posts (
1,
2). Since then I have also started minimizing dietary calcium and vitamin D, and have noticed a difference when I'm a little more lax on this. For example I ate a couple of servings of frosted flakes in the fall (I didn't realize it is enriched with vitamin D) and had a noticeable increase in muscle pain and cramping within a couple of days. I think avoidance helps me feel better, but I got pregnant a couple of months after figuring out this connection which confuses things somewhat - though the frosted flakes were during the pregnancy, so it seems I am still sensitive to vitamin D. Just for clarity I don't totally avoid D/calcium foods, I still eat butter and have occasional nibbles of cheese or a cappuccino, but I mostly avoid them.
I also haven't been able to pin down whether I have negative effects from the sun. Despite being in a good location for sun generated vitamin D, I don't spend a lot of time outdoors. But occasionally I do get a fair amount of sun, and I haven't had any noticeable or distinctive side effects from that.
As to the why, I briefly hoped it was because of hyperparathyroidism, which is attractive because it is comparatively treatable. My blood calcium levels do seem to fluctuate more than is normal, and have several times been on the high side of normal, but my PTH (pituatary hormone, I think) seems to be behaving as it should (low when my calcium is high), so the endocrinologist said "no". But this might be worth looking into.
There's also some discussion on this thread "
second guessing the consensus on vitamin D" (the first 11 or so posts are the article in question being pasted), I found the posts by Syptomatic useful and interesting, she doesn't identify as having ME, but has the negative reaction to D and seems very knowledgeable about some of the reasons why this might be the case.
[I also supplement a lot of magnesium (oral and nightly epsom salt baths) for most of my illness and while I think it helps 'mitigate' the effects of calcium/d, I still am unable to tolerate them even with my high magnesium intake.]
I hope some of this helps, and I just want to say that while this reaction to D kind of sucks, I've been really glad I discovered this interaction because it gives me something that I can do that helps me feel a little better (despite my occasional cheats ; ) Good luck!