Vitamin D

[Guest guest]

I posted a couple of weeks ago about the vitamin D. Mine was ten and my

Rheumatologist started me on the 50,000 weekly also thinking it could be related

to the pain but unfortunately mine did not help my pain it actually has been

worse but I don't think it has to do with starting the D.

Heidi

From: Jay

Sent: Wednesday, April 28, 2010 6:44 AM

To: stillsdisease

Subject: Yall aint gonna believe it .. MY PAIN IS 99 PERCENT

GONE!!!!! and it was a simple test that helped... please read

Heya guys,

Okay, most of yall know I've had it rough with just chronic all over

fibro type muscle pain for several years now and it never got

better. No matter how many times we tried cymbalta, or whatever new

SSRI/Norepehpenrine receptor meds, darvocet, vicoden, tons of

ibuprofen. etc. etc. I stayed depressed...

I saw a new Rheumy 10 days ago. One of the first things he asked me

after I told him my pain still is not tolerable, he asked " When was

your las VITAMIN D TEST? " Told him I've never had one to my

knowledge. He explained some new studies( 1 year old about) that

lacking vit D will cause pain and symptoms identical to fibro and in

some cases people have been misdiagnosed with fibro. chronic pain,

etc, and it was their Vit D levels. Now he did say, that it could

be both, I could still have fibro, and if my vit D is low that is

just adding to the pain. So we did the test. Normal is 40-80 Mine

was ....drum-roll 8 ,, yes Eight. I basically have very little

Vit D. He put me on prescription Vit D 50,000 iu once a week for 3

months , then we will check it then and go from there. He did say

that the normal doseage daily is 800-1000 IU per day and not the 400

that the FDA always said.. He said it's bunk. He's very young so

he's very up on studies. Knew all about stills. Told me some things

about the JRA part of it that I didn't know ( since I dont do any

research, and haven't for 5 years now) He says the don't even refer

to the systemic jra as still's,... it was called some long name like

juvenile rheumatoid systemic idiopathic polymyositis. now I

probably got that a bit mixed up but you get the point.

But here is the kicker, within 3 days of taking that first dose I

felt great, the pains are gone, and I mean GONE! , I CAN walk my

dog, without hurting. I have a ton of energy, I " m sleeping so much

better. And my depression is so much better. It's like a huge

weight has been lifted off me.

I had to see my family doc that same week and told him, and he knew

all about the study and says that he is recommending all post

menopausal women to have theirs checked and anyone who has autoimmune

issues, chronic pain etc. which is all of us. It may not be the

Cure all... But if your levels are low it may help to get them back

in the normal range and then take a daily calcium and vit D

supplement. (which I knew that I should have been doing all along

since I dont get in the sun an I dont eat well) but I tend to not

take my own advice sometimes. But yall Im not kidding.. I feel

like a completely different person. I didn't even have to take a

tylenol for the past 2 days! Not 1 . I have never gone a day in

close to 20 years without taking tylenol, or something much stronger,

and my pain was getting where the vicoden wasn't even helping so I

took ibuprofen with it. I finally had a night of sleep and didn't

wake up in pain.

So like I said, if you haven't had this test please do.... it may

help your pain tremendously.

He did say that the normal doseage daily is 800-1000 IU per day and

not the 400 that the FDA always said.. He said it's bunk. This new

Rheumy is very young so he's very up on studies. Knew all about

stills. Told me some things about the JRA part of it that I didn't

know ( since I dont do any research, and haven't for 5 years now) He

says the don't even refer to the systemic jra as still's,... it was

called some long name like juvenile rheumatoid systemic idiopathic

polymyositis. now I probably got that a bit mixed up but you get

the point.

This Rheumy also said( and I have read this in some research) that

they are having some good success with Ankara with AOSD. My guess is

the IL's that are involved. That drug targets IL-1 and a few

others, and we know AOSD seems to involve IL_6 , an 18. My sed

rate was up to 40 and crp 12.9 and he wants those back down in the

normal range where they used to be. My guess is that I 've had to

skip my enbrel so much since Christmas because of colds, flu,

allergies. surgeries. ..so cross my fingers that I wont have to skip

a dose and I'll see how my inflammatory markers are in 3 months, if

they arent much better I may switch.. I just hate having to take 1

shot every day. Once a week sounds so much better.

Well that's enough about me.. Please get those Vitamin D levels checked

Love Yall

Jenn