Vitamin D deficiency
writerchick - Mar 24th, 2009 9:37 AM
[ Original Post ]

Hi All! I had an appointment with a new rheumy yesterday and he wasn't very helpful overall. I wasn't surprised, it's at a government facility that is bound by very strict rules and the red tape is wrapped like Christmas paper. Anyway, now that I've vented :) He did say that my Vitamin D levels were extremely low (like bottom 9% of adults) and I also have osteopenia (I turn 35 next month). He said that the deficiency can mimic the bone pain and fatigue symptoms of FM and that as my levels go back up things should get better. He did acknowledge the trigger points and did not dismiss the FM, just wasn't willing to do anything for it. I'll try with my new Neuro next month, as I don't have any options of going to a different doctor unless I go with cash.

As far as the Vitamin D thing, has anyone else experienced this? Also, I have to increase my calcium supplement intake if there are thoughts or advice on that.
Thanks for the feedback!

Comment


 

writerchick - Mar 24th, 2009 9:41 AM

OK, so the fog is still rolling... I found the posting not so far down in diet about Vit D, but I'm still interested if you have any further comments :)


llcsmom - Mar 24th, 2009 4:27 PM

Our whole family has been taking vit D supplements for about a year now--since alot of information has been out there about how helpful it can be. (Especially if you live in a northern area-much less sun exposure). I haven't noticed a difference, though in my daughter with fibro and her symptoms, but we are all still taking it.

Dawn


belle1329 - Mar 25th, 2009 10:16 AM

Hi writerchick
I dont know about my vitimin D levels, but I do know that I have alot of clicking and pain in my arms, especially my left. I had asked in the other forum, if anyone had these symptoms. Would this be one of your symptoms. I just wanted to know if this could be another symptom of FM or maybe I should have my levels checked. Im not sure if the rhueumy did check. Thanks for your help :-)


CSG4mom - Apr 1st, 2009 9:51 PM

Hi!
My husband has been diagnosed after about a two years in limbo with fibro, IBS, chronic pain syndrome, degenerative disc disease and the list goes on and on. We just spent 2 weeks at the Mayo Clinic and were able to see a fabulous rheumatologist. He too has the Vitamin D deficiency and we are on our second round of high doses of D. The first time they said that was the whole cause of his pain - funny because even after his levels went up the pain didn't go away. Anyway, we learned that because of something with one of these illnesses, the body isn't able to absorb the nutrients and maintain them like it should. He also has low levels of testosterone and has been on hormone therapy for over three years now. All of this is related to tis "stuff". We have seen eight different doctors here and he is on 22 different medicines a day to try and just be able to function. he was working and trying to keep going and then after we returned from Mayo, his employer let him go because they didn't feel he would be able to meet their standards for his job performance. Lovely!! Anyway, I have become well versed in all of this and the only thing I can say is always question your doctors - read the tests results and ask questions. Never leave a doctos appointment without getting the results of your latest tests. You would be surprised how many doctors "overlook" important things that could be tied to why you feel so bad. Good luck on the D thing. By the way, when we finish the high dose, the doc said for him to take a D supplement (1000 mg) every day regardless!!!



JFogged - Apr 17th, 2009 5:16 PM

writercheck,

I also have been dealing with fibro since 91. I was recently referred to a rheumy and was diagnosed with osteopenia and a low vit d level.
I am 59 and used to be very active. Not anymore.
I have had serious issues for the past 1.5 years. I was diagnosed with severe malnutrition as well as severe dehydration. I have had to stop working and am being feed via a stomach tube. No fun at all!

I take 50000 iu of vit d3(perscrption) 3 times a week. I do not have any side effects from it. I also take a very good muti-vitamin 2x a day. They also have me on b12 shots weekly.
The idea is the vitamins are supposed to help ease the pain.
So far it has not helped with the pain but I am a little less tired.

Good Luck,
John


jacksgramma - Apr 17th, 2009 6:18 PM

I too am Vitamin D deficient. I have tried over the counter vitamin D but they seem to affect me in a weird way. My chest hurts after taking them, and it is really bad. So my Rheumy prescribes a huge doseage and I am able to take that, yet my insurance doesn't cover it. Now after re-testing he has me taking 2 capsules a week. He is very concerned about that.

Hope this helps,

Lori


eriey - May 6th, 2009 5:10 PM

Hi! I too am Vitamin D deficient. I was actually diagnosed with this before the FMS diagnosis. My levels were extremely low and I found what helped was if I took VitD in liquid form. You can find it at your chiropractor or a vitamin shop. My levels are still low after taking 1000IU everyday for 6 months, so now I'm up to 2000IU. It is true that VitD deficiency can mimic the symptoms of FMS, but it doesn't explain for the fibrofog, etc.
Another thing to keep in mind is that VitD deficiency can be an indicator of celiac, especially if you suffer from IBS or other intestinal problems. Make sure they check to rule that out too.


mypain - Jun 16th, 2009 9:10 PM

Writerchick,

I too had an extremely low vitamin D level. Did they check your sed rate? Mine was 3 times the normal rate?

Did he write you a prescription for Vitamin D? I try to get my calcium naturally and my test results came back normal. Good luck


axxie - Jun 16th, 2009 10:00 PM

My vit d is also below and I take two pills a day, along with 2 for folate and twice weekly b 12 shots of 3ml and I take iron 3 to 4 times a week, along with a multivitamin and salmon oil and one priobiotic.

I am 52 and only with those vitamins and my cymbalta can I function semi normally. My doctor will never give me my results, since I'm in Canada and most doctors will look at your numbers and say everything is fine. Whatever fine is for them is the norm. I'm now going to ask my doctor to refer me to a endocrinology and metabolism.
Since I have been waiting very patiently for a rheumy, I might as well get on a list with the endo also.

I just might go to biomedecal pharmacy, there are more personalized for your biochemistry, hormonal chemistry and neurotransmitters.


fred02 - Jun 17th, 2009 12:08 AM

Hi writerchick! I just found out about 4 months ago that i have a vitamin D deficiency! My test came back at a level 9, which i was told it should be between 32 - 100, so it was very low!! i have had to take very strong doses of vitamin d for 12 wks and on thursday i am going to get retested, but there has been no change in my leg pain since taking the strong dosage of the vitamin.


soohoschunsa - Jun 29th, 2009 11:40 PM

I too have had Vitamin D deficiency. I had to take 50,000 units of vit D once a week for 2 months. They are going to check my Vitamin D again. I believe this is common among diabetics as well.


fancithatt - Aug 5th, 2009 2:58 AM

I too have low vitamin D and Calcium. I have FMS, degenerative disc disease, osteoporosis, and other junk and I'm not old yet. So I would have to say that the low vitamin D does have something to do with the FMS but I don't think it will cure it! I wish. Been taking it for almost a year and it hasn't helped.
Good luck in your quest and I would love to here what your dr says and how you feel.


egret326 - Aug 6th, 2009 3:36 PM

Yes, actually my periodontist told me about it. She does an exhaustive medical history and was aware that I have fibromyalgia and have had breast cancer.

Anyway she provided a lab order for a specific vitamin D lab test. It was not the standard lab test and I had a lot of resistance from my primary care physician about getting this test at all. Had it not been professional courtesy between Docs she would not have done it.

Turns out I was very low I started on a very high dosage for a month was retested and found to be at a normal level. Now I take 5,000 IU daily and remain normal.

Another reason my primary care physician was resistant is the medical facility has its own vitamin recommendations and even though I told her that my periodontist was using current Mayo Clinic recommendations for Vitamin D - she still wouldn't budge. I mention this because since then my medical facility has increased its dosage recommendation for vitamin D.

What you really want to know though is did it have any effect on my fibromyalgia symptoms. None. But I am convinced that it is good for my bone health so I am sticking with it.

Please go to a site that you trust to see what all Vitamin D has recently been found to do. It's pretty astounding.

At the same time I was starting this a friend who has MS told me that a man in her MS support group had very good results in a couple of months of taking Vitamin D and his mobility was significantly improved. Sadly after she started she had no improvements of note.

Good luck to you though!


wolffin - Aug 27th, 2009 12:04 AM

I have to take a vitamin D supplement to keep mine up. It was way low and i had to take a super vitamin d pill once a week for a few months to get it up take an over the counter supplement now. Having my vitamin D levels where there supposed to be has done little if anything to ease the pain.


irishprincess07 - Oct 14th, 2009 4:35 AM

Yes recently i was also told by my primary doctor my Vitamin d was very low she was con cerned and put me on 2,000 IU a day on top of the calcium i take twice a day. Not sure if associated with the fibro i will be seeing my Rheumy in 2 weeks to find this out, along with so many other symptoms been experiencing lately, was diagnosed with fibro in 2000 after running test for Lupus. Have a great and restful night to all.