Vitamin D levels and bone pain

[rendean]

I've read all the old posts regarding Vitamin D , including the "opposing sides posts." I did not really find anything similar to my question.  Has anyone had bone pain that was caused by Vitamin D deficiency?  I've had horrible leg pain  for the past 6 weeks. At one of my appts, the neuro mentioned that low Vit, D levels could cause bone pain. I was scheduled to see the new rheumy he referred me to shortly  so I asked them to draw a Vit. D level along with the other labs. That was March 20th. Today I called and asked about the results. My vitamin D level was 6. I called the neuro to ask how much of a supplement I should be taking. Currently, I am taking 2000 IU. The neuro's nurse didn't know what to say except to ask the rheumy and I explained that wasn't my regular rheumy, just the referral from the neuro to rule out Sjogren's , which he did. Sloppy work, IMO, for not relaying the abnormal lab result.

Anyway, in the meantime I have been taking several meds to try and alleviate the leg pain. But, was it the supplements (probably too low of dose with a starting value of 6) or the new meds bringing some relief?

Any thoughts? Anyone?.

[rendean]

Thanks for the info!! So sorry you are having the same type of pain. It's a minus 10 on the fun scale. I initially had bone pain in my hands and then it moved to my legs. Have you tried anything else for the pain?

My pain has improved after we upped the nortriptyline I had started to 100mg. That was after the Lyrica made me loopy. It helped the pain but too much brain fog. I take baclofen (thanks Heather) for break through days and am doing better.

I hope you find a solution that works for you. I noticed on your pic that you have baby girl..my guess is her name is Suzie. It must be difficult to take care of her with the hand pain. Congrats on the little bundle of joy.

Let me know if you find something else that helps with the pain.

Take care,

Ren

[suziesmomyy08]

I have been seeing a neurologist for a few months now (I'm getting ready to switch though because he isn't really doing anything for me) but at first he checked my vitamin D level and mine was at like 6.2 or something and he prescribed vitamin D supplements of 50,000 IU 1x/week for 8 weeks and then vitamin D3 supplements 2,000 IU 1x/day there after, but then this week I went to see the neuro and he told me to just stop the 50,000 and go to the D3 2,000 3x/day from now on until he tells me otherwise, and to hold on to my other 4 vitamin D capsules.  I don't know what he's doing.   So, I hope this helps.  I have horrible bone pain, especially in my hands, but supposedly no arthritis, and so far, the vitamin D hasn't helped.  :(  I hope it helps you.  Good luck.

[rendean]

I'm not going to bother with calling the rheumy who sent the results back. He's from the academic hospital and it takes an act of Congress just to get through their phone tree to the correct clinic, then department , then nurse, then voicemail.... He's the Co-Dean of the medical school and only sees patients every other Friday.

So, I'll call my PCP next week when I return from Chicago after we get my son's consultation at Shriners. One health issue at a time..my child comes first. I'll stick with the over the counter ones I have for the next week. At least I have a dosage to go by which was a big part of concern..

[essdipity]

Well, will he write a prescription? That by far would be the best way, assuming you have insurance. You don't want to take 25 1000 iu pills at once, do you?

ess

[rendean]

I just opened my mail found a letter from the rheumy who ran the Vit D Hydroxy level.
His direct quote" As you can see, some results were more abnormal than we expected. Your vitamin D levels are low, and I recommend supplementation with 25,000 U of ergocalciferol once per week for 8 weeks."

Well no s*** , Sherlock. Only took you a month to send me the results.

He recommends D2 , I have D3 which I purchased after reading Elanie's posts. Can anyone tell me why I shouldn't just take the D3 I already have? Remember this is a rheumatologist reccomending this so I don't know if it's within his area of expertise or not.

Thoughts anyone?

[Want to feel well!!!]

Soooo sorry you are in pain!

When my vit-D was first tested last year I was told I was "depleted" and I as put on 100,000 units a week for 5 weeks.  Now I take 2000 units plus the 400 units in my daily gummy vitamins and my level is now 39.

It sounds like you need a mega dose with a level of "6."  Please don't let this go too long, Sweetie.

What type of vit-D are you taking?  I have found the gelcaps to be the easiest on my system and I believe they allow for better absorption.

I had a lot of specific stabbing muscle pain that went away when my level went up and has not returned.  My rheumy did talk about how he had seen improvement in bone, joint, and muscle pain with simply bringing up the vit-D levels in patients...he is a big vit-D advocate.

Wishing you pain relief,
Wanna :o)
    

[rendean]

My neuro is the one who said low Vitamin D could cause bone pain. I know Vit. D does affect the bones causing rickets in kids and osteomalacia, which softening of the bones in adults, so it makes sense that it would cause bone pain.

What my neuro prescribed is a "normal" supplement that someone with a normal or near normal level would take.

I have to go out of town to take my son to Shriners Hospital for a consult  so I guess I'll see my PCP when I return.

I'll continue to take my 2000 IU twice a day until then.

Thanks,
Ren

[essdipity]

First, I'm sorry about your bone pain. I don't know if low D could cause this because I'm very confused as to whether low D causes any symptoms at all. I've heard claims that it does, but nothing I'd consider scientific. If anyone can point me to a site or sites where this is truly explained and documented, I'd be grateful.

I do know that adequate D is important to overall health and good metabolism, whether or not symptoms accrue. Quite a few members here with low D (and yours is really low), are on prescribed megadoses for a limited period. Your PCP, assuming you have faith in him or her, is a good starting point, though you might get referred further. I do agree with you that even 2000 is awfully low when you have such a way to go to get to normal. (Though there's also disagreement as to what normal is.) Anyway, I urge you to keep pursuing this. I'm trying to increase my own level (34, tested nearly a year ago) by taking 1400 IU a day, and mine's already fairly good, though some would say low-normal.

Please keep us filled in on this. And sorry your neuro is so clueless. That's not a good sign.

ess

[rendean]

I thought 2000 was too low especially with the need to restore the levels to normal. Guess I'll call the PCP and ask about it.

Thanks for your input.
Ren

[goofysmom1]

my vitamin D was at 18 when I was tested & I was told to take 2000 i.u. a day, plus the 400 in my daily multivitamin.  My PCP also put me on a prescription - which is the equivalent of 50,000 i.u. once a week.  I am no doctor - but 2000 i.u. a day isn't considered a "high" dose - especially when your level is so low.

I have heard that bone pain can be a symptom of low vitamin d.

Good luck,
Chrisy

[rendean]

The neuro's nurse called me back this morning and told me to take 1000 IU a day. I responded that I only had the 2000 IU. Seems like an awful low dose for a lab result of 6.

Since this doesn't seem to be the Neuro's field of expertise any suggestions on who would know , PCP maybe?

thanks,

ren