Vitamin D Deficiency

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Sherrine
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   Posted 3/23/2009 12:45 PM (GMT -6)   
I have mentioned this before but I think I'll bring this up again.  I was diagnosed with low vitamin D last year even though I was taking 1,000 IU a day.  My doctor upped my dose to 1,400 IU daily and I was still deficient.  Then he upped it to 2,300 IU a day and I STILL am deficient...I just found out today.  So now he wants me to take 3,500 IU a day.
 
Many with fibro and chronic fatigue are deficient in vitamin D.  Since I started taking the higher doses of D, my pain and fatigue seems to have decreased.  The jury is still out on whether or not this is just a good period for me with the fibro OR if it's from the added vitamin D.  I will know for sure in a few months when the rainy season hits here in Florida.  But, today it is a drizzly day and I don't have the extra pain I usually do!
 
Anyway, it might be good to ask  your doctors about having the blood test to check your vitamin D levels.  Vitamin D (make sure you use D3) is very inexpensive.  I get mine at Walmart.  It would be wonderful if this could help many members on this forum so I wanted to share what was happening with me. 
 
I tried posting the link to this site that tells you a little about vitamin D deficiency and fibro but it wouldn't go through.  So I pasted it here.  Hope this helps you.
 

Vitamin D & Muscle Pain:

Low vitamin D levels can cause muscle pain and weakness. Studies show that as many as 25% of people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) have low vitamin D levels, and that supplementation may help lower pain levels in some cases. One study shows that vitamin D-deficient people need twice as much narcotic pain reliever as non-deficient people.

Your body needs vitamin D to help with calcium absorption and for bone growth and strength. Along with calcium, vitamin D protects you from osteoporosis.

Vitamin D Dosage:

Some FMS and ME/CFS experts recommend between 1,000 to 2,000 IU of vitamin D daily, which far exceeds the FDA's recommended daily allowance. In fact, the National Institutes of Health considers 2,000 IU the highest tolerable daily amount. However, recent discoveries about the importance of vitamin D for overall health are changing opinions about how much is enough. Make sure to talk to your doctor about how much vitamin D you should be taking. If you take a high dosage, your doctor may want to test your levels periodically.

Vitamin D in Your Diet:

Vitamin D is naturally available in eggs, Swiss cheese, and several fish, including salmon, mackerel, tuna and sardines. You also get it from sunshine. Food makers add it cereal and milk to help prevent rickets in children.

Side Effects of Vitamin D:

Too much vitamin D is potentially toxic. Side effects:

  • Nausea
  • Vomiting
  • Poor appetite
  • Constipation
  • Weakness
  • Weight loss

Your doctor can help guide your vitamin D regimen.

 
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

Post Edited (Sherrine) : 3/23/2009 11:51:30 AM (GMT-6)


Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 3/23/2009 12:56 PM (GMT -6)   
Thanks Sherrine. I was also just diagnosed with vitamin D deficiency and high cholesterol. I am taking weekly vitamin D for 12 weeks and then will switch to daily. Can't remember the dosage.
Sue

jewelrylady
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Date Joined Jun 2008
Total Posts : 671
   Posted 3/23/2009 1:45 PM (GMT -6)   
Sherrine, this is so important for us to know, thank you. My vitamin D levels have always been good, I drink alot of milk, but this last Fall I switched to fresh milk & so I have began taking Vitamin D3 1000 IU's this winter. I was so worried I would become more depressed then normal for this time of year, but I actually faired alittle better. Keeping everything in balance is so necessary for having a good life & not living in pain, fatigue & depression 24/7. Hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety  Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


Marlee2
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Date Joined Aug 2007
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   Posted 3/23/2009 2:28 PM (GMT -6)   
I had to cancel my last app with rheumy due to Ken's problems but I did finally find out that mine is a 12 and it should be 30-80. Guess I better get on vit D. I can't get in to see rheumy til the middle of next month to see what he recommends but I'm going to go ahead and start taking it now.
 
Did your doc say why your having such a hard time getting your's up Sherrine???
 
Thanks for bringing this up again.
 
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


Tootiebug58
Regular Member


Date Joined Feb 2008
Total Posts : 378
   Posted 3/23/2009 2:48 PM (GMT -6)   
Very interesting Sherrine....Thanks for that information. I had my Vit D level checked in Dec and he said he was very pleasantly surprised that is was high, since I have osteoporosis. I guess eating fortified cereal twice a day and drinking tons of milk has helped. He didnt even recommend a supplement. Geeez, I actually got good news for a change LOL Thanks for sharing

Hugs

Sue
Tootie
-------------------------------------------
anxiety/panic attacks...osteoporosis....Fibro
 xanax


Binki
Regular Member


Date Joined Jan 2009
Total Posts : 386
   Posted 3/23/2009 3:25 PM (GMT -6)   
I am deficient in Vitamin D. I take 4,000 IU (D3) a day. When my doc (ob/gyn) checked it back in December, I was awfully low. She started me on 500000 IU once a week for 8 weeks, then back in for another blood test to check my level.

As for a pain difference, I can not positively say that it changed quickly. For the last week my r. hip has changed dramaticly with the type of pain I was having, it did become a little more prominent late yesterday and today. (the weather became really cold for me over the weekend, it was so nice last week.) In general as far as my daily FM symptoms go are still the same.
Lori  
 
Dx Fibro 1/2008, gastritis
 
600mg Gabapentin, 50mg Pristiq, Ultracet and/or Fentanyl patch as needed, Vitamin D3, Menopausal Support Multi-vitamin


MEG25801
Regular Member


Date Joined Jun 2008
Total Posts : 204
   Posted 3/23/2009 3:44 PM (GMT -6)   
I am also Vit D deficient. I had it checked 3 months ago and was low.  He ut me on 50000 IU once a week for 4 weeks.  Had it rechecked in 2 months and was lower than what I was initially  (from 25 to 22)  He again has put me on the 50000 IU  once a week but this time for 6 weeks and I will have it checked again then.  I do notice a difference about the 3rd week of taking it but then about  2 weeks after quitting the pain and fatigue was back.  Hopefully this will bring it up for good.
 
Missy
Diagnosed with Panic Disorder(16 yrs ago)-GERD(12 years ago)-GAD(16 yrs ago)-IBS(12 years ago)-DDD(6 years ago)-Arthritis(since teenager)-Controled HBP(2 years ago)-Diagnosed with fibromyalgia 9-29-08.
Meds: Cardizem CD~Prilosec~Klonopin(prn)~Daily Vitamin~Tylenol~Lyrica


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15139
   Posted 3/23/2009 3:51 PM (GMT -6)   
I'm at 26.9 and have been fooling around with this for over a year.  I was taking 1,000 IU's daily for nearly three years before I found out I was deficient.  I can't imagine how low I would have been without doing that.
 
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


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 3/23/2009 5:03 PM (GMT -6)   
Last Apr. mine was checked and it was 9.  It was a record low for my clinic.  I'm been taking 2000 or 3000 IU daily.  I think last time it was checked it was around 55.
 
I feel like not only was it part of the excessive fatigue - it was a big contributor to some mood swings I was having.  Symptoms were similar to hypomania.  The mood swings pretty well cleared up after taking D3 for a while.
 
B. hates the Seattle area cause it's so overcast.  I'll never hear the end of this low vit. D thing. 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 3/24/2009 1:04 AM (GMT -6)   
Almost everybody is deficient in Vitamin D. Only a small amout of the world's population can get enough through sunlight.
So your children may need it also. Every single African American, fibro or not, was deficient. Only extremely pale caucasians are ok. Extremely pale,

Donaneil

AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1598
   Posted 3/24/2009 4:22 AM (GMT -6)   
I just had mine checked recently, and it was fine.  Donnaneil, I do fit into the "extremely pale" category (you kind of have to wear sunglasses to look at my legs in the summer with all of the glare, lol).  I have to stay out of the sun because I burn so easily, but I guess there is an upside in that I absorb Vitamin D better.
 
Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15139
   Posted 3/24/2009 6:27 AM (GMT -6)   
Only about 40% of Americans have a vitamin D deficiency.  It's still high but not as high as you are thinking, Donnaeil.  But people with fibro are more predisposed to this problem.  I live in Florida and am in the sun a lot.  I take vitamin D supplements and still have a deficiency.  Fibromyalgia is definietly playing into this.
 
 
 
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


GamJill
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Date Joined Jun 2008
Total Posts : 1279
   Posted 3/24/2009 9:03 AM (GMT -6)   
Good topic Sherrine- I have never had a Vit. D level done and my Dr. ordered one a couple weeks ago. Mine was 25. She put me on 50,000IU once a week for 12 weeks. It will be interesting to see if it helps the pain and fatigue. I have taken two doses now.
 
Statgeek- I had low Vit. D and sky high cholesterol, they had me repeat the fasting cholesterol and went in for that yesterday AM because they want to make sure it is reading right. Vit. D deficiency and high cholesterol seem to go hand in hand with some of us with fibro it seems?
 
GamJill
 
 
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


SleepyBug
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Date Joined Nov 2008
Total Posts : 1097
   Posted 4/2/2009 7:20 AM (GMT -6)   
Bumping for our new member Drowsy!
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck


Marlee2
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Date Joined Aug 2007
Total Posts : 6067
   Posted 4/10/2009 10:15 AM (GMT -6)   
I am bringing this back up cause I know since I have been taking the 1600 IU of vit D a day I have more energy and more motivation than I had before. I can't stress enough how important it is to have your vit D checked. I wish I had insisted on having mine checked long ago. I still don't have enough energy and I have my down times but I surprised myself yesterday with all I did and I wanted to do it. I can't wait til my doc app on the 20th to talk to him about 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


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15139
   Posted 4/10/2009 10:30 AM (GMT -6)   
Marlee, I'm taking 3,500 IU a day!  LOL  I'm not nearly as tired.  I'm so glad this is helping you!
 
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


GamJill
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Date Joined Jun 2008
Total Posts : 1279
   Posted 4/10/2009 11:06 AM (GMT -6)   

Sherrine/Marlee- I started my high dosage of Vit. D a little over a month ago and I am starting to notice some increased energy and pain is easing up. Now I'm not sure if it is the nicer weather getting here too, but whatever it is, I'll take it!!!

GamJill


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


Sherrine
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Date Joined Apr 2005
Total Posts : 15139
   Posted 4/10/2009 12:42 PM (GMT -6)   
That' great news, Gamjill!  Love to hear some successes on here!
 
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


MT Lady
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Date Joined Jul 2008
Total Posts : 945
   Posted 4/10/2009 12:54 PM (GMT -6)   
Well sorry to say, this isn't a success story. I have been taking...are you ready for this?? 150,000 units once a week and my D level is still at 20, which is just too low. On Monday, I will be having a colonscopy and endoscopy, with tissue samplings, to see if they can find out why I am not absorbing the D. Wish me luck! :)

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


pattipanda
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Date Joined Jan 2009
Total Posts : 1014
   Posted 4/10/2009 1:21 PM (GMT -6)   

Yikes!!! Good luck Miriam!!!  I need to do that too.. Just chicken!!!! 

Hugs and be brave!!!  I'm proud of you!!

I'm not sure about my D count.. I haven't had it done yet but will ask about it at my next appt (mid May).. but since it seems to be an issue with everyone else I decided to go out and buy some (and I might even remember to take them once in a while.. LOL).  I figured 1000 mgs a day wouldn't hurt.

I find it so interesting that everyone seems to share this difficency.

Later....

 


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


MT Lady
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Date Joined Jul 2008
Total Posts : 945
   Posted 4/10/2009 2:39 PM (GMT -6)   
Thanks Pattil, you are so sweet! And no need to be chicken about these tests. They knock you out. I was there for my husband and he did not remember a thing and he had both at the same time too. Only unpleasant thing is the day before, the prep for the tests, tol "clean you out" and I have to be on clear liquids for 24 hours. I've already warned my husband, be prepared for cranky me because I won't be able to eat a thing. I will be 58 soon and haven't had a colonoscopy yet, so I am really overdue. I too have put it off for a long time. For the past year or so, I've been having some bowel "issues" along with with low D, so I really need to find out what's going on. It may be a gluten intolerance and I've tried to be gluten free, but I don't stick with it, I love bread and things so much! I need to hear from a doctor that I have to stay away from gluten in order to really give it up, so that's another reason for the tests. Anyway, I'll let you know how it goes and what I hear. Also, I do a lot of research on many things, including FM, and it seems that a deficiency in vitamin D is very common in people with FM, so...one more thing we lucky fibromites have in common! The symptoms of low D are muscle pain and fatigue, so we wouldn't really know, but, once you normalize it, hopefully, it will help alleviate some pain and fatigue. All we can do is try!
be well
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


MinnyMouse
Regular Member


Date Joined Jun 2010
Total Posts : 193
   Posted 6/5/2010 12:51 PM (GMT -6)   
Wow... I find this information so helpful. I have been sick for many years, dr. to dr., treatment to treatment, surgery to surgery. Last week I found a Rumy that finally did the bloodwork and I mean tons of it. Found out my Vit. D is at 10. He put me on 2000IU Daily and 50,000 weekly. I have never been a believer in vitamines and usually stop taking them after about two days.  You guy's make me WANT to continue taking them to see if this is a big part of the issue. He said it's Fibro and pretty advanced. Thank you for the discussion. I have alot to learn. He also did not rule out Lupus. Right on the edge, one of the three tests were positive. Thanks again.

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/5/2010 1:45 PM (GMT -6)   
I've been taking 4000 IU per day for several months now and my Vit. D count is still low. I see my doctor in July and will have blood tests repeated so she can compare to 3 months ago, and then we'll see what the next step is. I had a bone density test done recently and all looked fine, so we'll see what happens.

We get tons of sunshine in Calgary, even when it's really cold out (or especially when it's really cold out!) so I'm getting lots from being outside. Not sure why it stays low.

Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15139
   Posted 6/5/2010 3:58 PM (GMT -6)   
Hi, MinnyMouse, and welcome!  Well, I'm now taking 4,500 IU a day of vitamin D3 and am doing even better.  Summer is usually the worst time for my fibro because I live in Florida and we have a lot of stormy weather and humidity in the summertime.   It's warm now and we are getting the rain and so far so good!  I'll keep you and everyone else posted.
 
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


Alcie
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Date Joined Oct 2009
Total Posts : 3420
   Posted 6/5/2010 6:03 PM (GMT -6)   
I read a study published in Medscape that said for every 1ng you are low you need 100 units of D. For my level of 18 I needed 4000 units a day (in winter, and on top of what I already was taking in calcium, etc) to get to 58, or normal.
Alcie
 
 

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