New here, and wondering if this has happened to anyone else?

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Regular Member

Date Joined Mar 2009
Total Posts : 30
   Posted 3/28/2009 12:28 PM (GMT -7)   
Hi I am new here... my name is Rachel and I am 27 from Arkansas. I must say first off that this forum has been an invaluble resource to myself and my fiance who once was extremely confused as to what fibromyalgia really is -- and thanks to the 101 resources link, I think he finally understands it!
Well, I will try to get to the point here without having to give too much backstory. I was diagnosed with fibromyalgia and severe vitamin d deficiency in October of last year. It took years to reach the diagnosis, since for years my pain stayed localized -- it was either in my hips or in my knees. Last August is when it finally just got everywhere, in every joint and muscle in my body.
The thing is this. My rheumatologist believes the Vitamin D Deficiency is what caused my fibromyalgia, along with severe knee trauma in my teenage years. (which is probably why that's where it started.) Basically, he thinks this because of a few things. At age 15, I got psoriasis -- which he says is linked to Vitamin D. Shortly after that is when I started sleeping all day and night -- I would come home from school and go to sleep until I had to go to school the next day quite frequently. Then that's when I got periodontal disease, and by the age of 22, I had to get dentures because it had gotten so bad -- which he says is also linked to the Vitamin D. My teeth were malformed and had, as the dentists always put it (who were baffled by the severity of the situation, given my age) almost no enamel on them. The pain started when I was about 20 years old.
It finally became unbearable a few years ago, when the pain finall started lasting longer than a few months at a time before fading completely and persisted to the point that I could hardly walk. I finally saw a doctor. Fibromyalgia was never even mentioned. The absurd amount of blood tests were run, but they only found one thing -- EXTREMELY high cholesterol. My total cholesterol was over 700. LDL was 300, HDL 30, and triglycerides 450. At age 25 -- so the whole diet and exercise speech was given to me along with cholesterol medication (Vytorin, before the press release on it). Now, I may not have had the best diet at the time, and had slacked off on exercising -- but I was 25 years old? and I wasn't overweight or underactive physically? They never seemed interested in pursuing WHY I might have it, not even when my LDL level went down, but the HDL and triglyceride levels continued to get worse, which they called "metabolic syndrome".
Then, my blood sugar went out of whack. It was, fasting, 115 every day. They said it was insulin resistance and slapped me on some Metformin.
Now, when I finally got to a rheumatologist, and he found the Vitamin D problem (which, when diagnosed, my Vitamin D level was 6.2) and slapped me on a 50,000 IU tablet of Vitamin D once a week with a 1,000 IU supplement of Vitamin D twice a day. My Vitamin D has gone up to 38 since November, but the rheumatologist believes I have had the Vitamin D problem perhaps forever and thinks I will always need to be on the 50,000 IU pill.
Now here's the weird thing. After two years of desperately trying to exercise when I could and eating right (and finally giving up on both a few months before the diagnosis) my cholesterol and blood sugar were worse than ever -- until I got on the Vitamin D. I can proudly say that suddenly my blood sugar has dropped to 70 and my total cholesterol is under 300 -- LDL at 56, HDL at 45, and triglycerides at 130 -- quite obviously because of the Vitamin D. It's the only thing that I was doing differently during those few months!
I just wanted everyone to know I am living proof that Vitamin D very adversely affects those things, and probably many others. I hope everyone with fibromyalgia gets their Vitamin D checked, especially if they have ever had a history of a cholesterol or blood sugar problem. It really may be out of your control, and out of any cholesterol or diabetes medications control as well! I know I wasted A LOT of money on both medicines over the years. I mean, we already have to spend so much on our medicines for fibromyalgia (I mean, I know I already take four different medications for THAT) why spend more if one little thing can take care of it..?
I just thought I would share that with everyone. Thanks for listening.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17497
   Posted 3/28/2009 1:34 PM (GMT -7)   
Hi, Rache, and welcome!  I just did a thread this week about vitamin D deficiency.  I have that too.  I haven't been given the 50,000 IU pill but I do take 3,500 IU daily.  I didn't have the problems with cholesterol like you did and I'm diabetic.  I will be watching to see if it helps my blood sugar now!  Thanks for mentioning that.
Many with fibro are deficient in vitamin D I have since found out.  That's why I posted that thread.  It's easy to check and vitamin D isn't that expensive either. 
It seems the more D I take the less ibuprofen I need.  It could be wishful thinking but I'll soon find out.  I live in Florida and the rainy season starts in June and that's when my bad fibro period usually is.  So, I'll let everyone know how that goes for me, too.
I'm so glad you found us and joined in.  I'm also glad  you read the Fibro 101 thread.  I send newbies there all of the time.  I'm glad it helped you that much, too.
Again, welcome aboard!  I hope to hear more from you soon.
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

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 3/28/2009 2:07 PM (GMT -7)   

Hello there Rache..

Nice to meet you!!!  Sounds like you sure have an interesting history and I'm glad you checked us out and have joined our wonderful fibro family!!

I need to get my Vit. D checked out at my next doc. appt.  I'm sure it's non exsistant!

I noticed in your post that you had extremely high cholesterol and you're very young.  I too had that problem, at 32, when I was exercising every day mine was about 450.. BUT.. the thing we have in common is the psoriasis!!  I was told that people with psoriasis have a tendency to have high cholesterol.. I don't know if that's an old wives tale or what.. but I've been dealing with it for most of my adult life.  It sure would be interesting if it can be held at bay by vit. D.  I'm 51 now and have been taking Lipitor for years.  My choles. is reasonably normal now.. but the LDL is still high. sad

Again.. welcome to the family!!  I'm so glad you found us!!

Take care

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

Regular Member

Date Joined Mar 2009
Total Posts : 30
   Posted 3/28/2009 5:46 PM (GMT -7)   

Hello again, and thank you guys so much for the welcome! I really appreciate it.

I viewed your post on Vitamin D Deficiency Sherrine, it's very informative, and I am glad someone is trying to share this info with the rest of the community! A lot of the bone pain I had faded with the Vitamin D, as well as that god awful fatigue... even nearly ten years after the fatigue had started, I was still sometimes coming home from work and falling asleep until the next day, and even if I didn't sleep that long, I was always at least taking a nap, every day. But the Vitamin D really helped that, and I am at least at the point where I only have to take a nap once a week or sometimes twice, depending on the day of course. But I agree with you -- I think you should try the 50,000 IU pill. I was actually taking a multivitamin prior to being diagnosed. Granted, it was only 400 IU, but I think it should have counted for something.

And pattipanda, I really hope you can get your doctor to check your vitamin D -- Don't take no for an answer! I needlessly took Vytorin for years and I am still not happy about it... at the time I had no insurance and that stuff wasn't cheap. I've had psoriasis for twelve years now, on the back of my scalp. Luckily that is the only place it has ever been. My fiance's father just was diagnosed with psoriasis, and he has it all over his arms and hands, so he is always wearing these plastic gloves now. I really feel for him! I tried so much stuff to get rid of the psoriasis. For the longest time, probably years or so after I got it, I just thought it was bad dandruff, as young as I was, I didn't know any better. When I figured out it was psoriasis I bought all kinds of shampoos off the internet, and of course none of them worked.


I'm looking forward to learning more from you guys! Just hearing that other people have these problems and I am not crazy really helps. 

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