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MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 11/13/2008 8:43 PM (GMT -7)   
I have been told, and have read, that people with FM also have low levels of vitamin D...well, it's common in people with FM. I have been trying to elevate my level of D for the past year, working with my doctor and taking large doses of D (500,000 units a month, taken once a week) and yet still my level is too low. I'm wondering if any of you have this problem and if so, have you been able to get your levels up, and how? I'm finding this quite frustrating.
Thanks so much,
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, microdiskectomy C5/C6, bulging disks L3/L4, compressed nerve L5/S1, disc compression L5/S1, IBS, hypothyroidism (now FINALLY well controlled) Also angioplasty, and angiogram, high bp, well controlled, high chol, now normal, well controlled

 


garnetstar
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 11/13/2008 8:56 PM (GMT -7)   
I also have had low Vitamin D. Mine was an 8; when the normal level is supposed to be 30-100! I've been taking supplements and need to get rechecked soon. I'll let y'all know about that!

donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 11/13/2008 8:59 PM (GMT -7)   
Actually, when they research people who have chronic pain, most of them are low in vitamin D. Every single Black person who was tested, had low levels also. So, it ain't just us. lol

Donnaeil

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 11/13/2008 9:05 PM (GMT -7)   
I didn't mean to imply it is just people with fibromyalgia. I was initially at 12 and now after a year, it is only at 20 and my doctor is telling me it should be above 35. I am very concerned because of what I have been reading about the effects of low levels of vitamin D.

Fibromyalgia, Osteoarthritis, scoliosis, microdiskectomy C5/C6, bulging disks L3/L4, compressed nerve L5/S1, disc compression L5/S1, IBS, hypothyroidism (now FINALLY well controlled) Also angioplasty, and angiogram, high bp, well controlled, high chol, now normal, well controlled

 


julieleaps
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 11/14/2008 12:01 AM (GMT -7)   
When I was dx'd with fibro in April, my rheumy automatically ordered labs to check my Vit D level.  I was at 13.
 
He presribed 50,0000 iu x 1 weekly for 2 months, then 1 monthly.  I supplement with daily 1000 iu, per his instructions.
 
Just had a recheck, and I'm up to 25.
 
I am going back to 50,000 iu x 1 weekly, and will be retested in 3 months.
 
I continue to take 1000 iu. daily.
 
I was told it was common for fibro folks to suffer from this defiency.  He told me that my body is just not absorbing it, for whatever reason. Couple that with living in the far north where it's dark now at 4:30 in the afternoon, there's not much daylight in the winter, especially when I was working full time in my office from 8 - 5.  I have seen numerous reports on television lately (been watching alot of news programs since I'm now on a disability leave from work due to my current bad flare). They are saying that almost everybody in the northern part of the country is deficient in vitamin D. And, those in the southern parts are covering up skin with sunscreen, thereby preventing the absorption of vit D.  It only takes about 15-20 minutes of non-sunscreen time in the sun each day for your body to absorb the necessary vit D - that is, if it will!  Alas, I am stuck with supplementing!
 
I hope that helps you, MT.
 
 
*Severe Spinal Stenosis, ACDF Surgery Levels C5-7, Jan 07, Degenerative Disk Disease, Osteoarthritis,  Dx'd Atypical Migraines & Neuropathy Jul 07, Dx'd Fibromyalgia April 08,
GERD, Insomnia, Undiagnosed Inflammation with Elevated Sed Rate, C-reactive Protein
Mom to 2 College students +1 Exchange Student in Germany, stepMom to 2 marrieds, 8 stepGrands and my third job is being a pastor's wife.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 11/14/2008 1:18 AM (GMT -7)   
MT, I did not think you thought that way. Friends.

Donnaeil

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 11/14/2008 1:33 AM (GMT -7)   
Like you Julie, I live towards the north, well midwest, but it's dark here by 5p. In any case, I walk, every day, have three dogs, so they are my motivators...okay, there are those days that I dont' but I am an outdoor walker and I'm still very low. Doctor is concerned low...so of course, it's scaring me. I'm not trying to scare anyone else here, but you've all probably heard the reports, what low D can lead to and cause. I just don't understand why I'm not absorbing the D, I take 100,000 units once a week, then the second week I take 150,000 units, so 500,000 a month. I wonder if I should take 1,000 daily in addition? I will ask my doctor. Thanks so much for your input, all of you. Yes Donna, friends : )

Fibromyalgia, Osteoarthritis, scoliosis, microdiskectomy C5/C6, bulging disks L3/L4, compressed nerve L5/S1, disc compression L5/S1, IBS, hypothyroidism (now FINALLY well controlled) Also angioplasty, and angiogram, high bp, well controlled, high chol, now normal, well controlled

 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/14/2008 5:59 AM (GMT -7)   

I have low Vitamin D but not that low.  But, I do take folic acid and that is supposed to help with absorption.  I started taking the folic acid after I lost my colon because my doctors told me that it does help with absorption of nutrients..  So, maybe folic acid would help you, too.  I take one 800 mcg tablet daily.  This is over-the-counter at the drug store.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1431
   Posted 11/14/2008 6:09 AM (GMT -7)   
I wonder if it has something to do with our skin not being able to manufacture D?

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/14/2008 8:20 AM (GMT -7)   
Marlee, write a note to yourself to call doc about vit D results. Write another note to yourself to take your vitamins.
 
I know I don't spend the time I use to in the sun. But if Sherrine's is low the sun must not have anything to do with it.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 11/14/2008 11:20 AM (GMT -7)   
Marlee, if you Google low vitamin D, you will see all the complications it can cause, mainly MUSCLE PAIN AND FATIGUE. I'm not saying that if you are low in D, then you don't have FM, but it can exacerbate our symptoms. I will call the doctor on Monday and review these results and see what she says. I will share with all of you. Just thought someone here might have some information. Marlee, how are you feeling? and Ken?
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, microdiskectomy C5/C6, bulging disks L3/L4, compressed nerve L5/S1, disc compression L5/S1, IBS, hypothyroidism (now FINALLY well controlled) Also angioplasty, and angiogram, high bp, well controlled, high chol, now normal, well controlled

 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/14/2008 11:35 AM (GMT -7)   
Marlee, I use suntan lotion when I'm in the sun.  I can't absorb the vitamin D that way.  So, I can be in the sun all day and won't get any D.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


stitching star
Regular Member


Date Joined Oct 2008
Total Posts : 38
   Posted 11/15/2008 10:28 PM (GMT -7)   
I have incredibly low levels of Vit D. They have been at 6 for over 2 years, and probably for much longer. I only got tested for it the first time 2 years ago.

If I take Vit D orally in ANY form I get incredibly sick. I vomit for 24-72 hours, nonstop. I can't take the weekly dose, any OTC kind, or even drink milk or eat much dairy. I have ALWAYS, since early childhood, gotten sick to my stomach if I drink milk.

I can't go out in the sun b/c I end up very sick, even in just 20 minutes on a warm, not hot not cold day. My skin gets a strange texture to it, kind of like saran wrap and I feel very very ill. It has been this way for years.

I just started getting intramuscular shots of Vit D. 500,000 IU per shot, 1 shot per month. I did the first shot in two steps, b/c I didn't know if I would end up really sick. Monday I do my second shot. I really really hope it wll help me feel better. Many of the symptoms of severe Vit D deficiency are already showing up. I am not yet 40 and will be on fosamax if my bone density gets any worse. The endocrinologist says that some of the pain I have is b/c my bones are leaching calcium out. He says I will have a lot of broken bones and really really be in a state of emergency very soon if we can't fix this. But he says it may be that my body will not accept Vit D.

Does it scare any of you like it scares me?
Susie
SAHM, kids are the light of my life
dh of 17 yrs, my sweetie
ds 16yo, great kid, Sr. in high school
dd 13yo, my reward, homeschooled
ds 8yo, amazing kid, great magician
 
2 furbabies - Gracie and Capn Morgan, both cats
1 featherbaby - cockatiel - Goldi the Evil
 
I have always imagined paradise will be some type of library.
     -Jorges Luis Borges
        

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