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Linda.m

New member
Joined
Feb 2, 2015
Messages
1
Reason
DX FIBRO
Diagnosis
08/1992
Country
US
State
CA
Hi all, I'm new to this forum but have read a lot of your discussions. I've had fibromyalgia for 22 years (or so I was told by numerous doctors). Then my rhuematologist ran some blood tests for unrelated reasons and said i'm vitamin D deficient. Then he said because of this, he does'nt think I have fibro after all, but instead it's the deficiency that's causing all my pain and everything else associated with fibro. I thought he was an idiot until I did research on vitamin D deficiency. It causes the exact same symptoms as fibromyalgia and other diseases and syndromes. I was completely shocked! PLEASE, PLEASE do yourselves a favor and have your blood tested for your vitamin D levels. And please don't take the over-the-counter types, they may not be strong enough, or may be too strong. They can be very toxic if not taken properly. Any number under 30 is severely deficient. Mine is 15.9. I'm taking vitamin D2 50000iu every week and it's very inexpensive. Please do your own research on the subject first if you plan to take otc supplements. I'm confident you'll be shocked on what you find in your research. Even if it is fibro that you have, the vitamin D supplement is suppose to ease "a lot" of the symptoms. Research shows that most fibromyalgia patients are vitamin D deficient. I've just started taking the supplement. It takes about 3 months to get the full effects, and only about 1 week to feel stronger again. After 22 years of suffering, I can wait! I will follow-up on effects later. Thanks for reading and God bless.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
You're correct about Vitamin D levels. I was on that regimen for 8 weeks to bring my levels up. Unfortunately that's not my issue, although my doc and I do watch my levels as low D can cause and increase pain. I now supplement my D by taking 1000iu for six days, then 5000iu on Sundays. So far so good.
 

SunnyinSD

Member
Joined
Dec 26, 2014
Messages
19
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
CA
I too, was told today that my Vitamin D level is low. I made sure to ask my doctor to test me for this because no one is giving me any other diagnosis. But I know my pain. However, living in sunny california I wanted to make sure before taking the supplement myself. I'm trying to be better about that--asking my doctor. Heh. She prescribed to start with 1000 IU's once a day with a meal, of Vitamin D3. Seems low if I'm deficient but it sounds like a good start. I've been dealing with chronic pain for so long. Mostly muscle pain and herniated discs. I no longer take opiates. It's been a month off opiates and i'm very...tired. But I'm always tired lol. I can't seem to start walking yet, like I want to. Silly because I'm not working and have no other excuse besides fatigue and mood. I did do some core exercises and squats with my big ol Swiss ball. Victory! ?
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
You get vitamin D from the sun too.think about why our D is low. We are inside all day n night.
Research how much vitimin D you get and how long you need to be in the sun. More than the supplement. And its Free. Fibro is more than low vitamin D.
If that was the case I'd have opened a vitamin D depot...lol
 

PythonPlay3

Active member
Joined
Sep 16, 2014
Messages
59
Reason
DX FIBRO
Diagnosis
06/2005
Country
CA
State
AB
Maybe the Vit D deficiency is just a common symptom of fibro- maybe a contributing factor to the development of it. I too have Vit D deficiency as well, so do most of the other fibro friends I have. We are all on oral vit D supplements. It sure is something to think about.
 

SunnyinSD

Member
Joined
Dec 26, 2014
Messages
19
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
CA
Cmetryme, you are so funny. :) you made me giggle out loud. I have yet to get a fibro diagnosis, but I relate that's for sure. Widespread muscle pain and fatigue --yes and yes! My situation is a difficult one because I deal with overuse injuries and disability in my left arm and hand. Spine kyphosis. With a wc claim still going on (11 years ridiculous), I probably don't "want" a diagnosis like fibro yet or "oh it's been vitamin d deficiency and osteomalacia this whole time!" Know what I mean? Sorry I was reading the darn internet and I wonder if this vitamin D being low has given me adult rickets symptoms. Do I sound like a hypochondriac? I'm sure we all relate there sometimes. Since we look fine sometimes but know all too well the painful struggle. I started a 5mg dose of Abilify again. Hopefully the vitamin d3 supplements the doctor recommended help soon too. I am feeling hopeful. However very tired. And I get a weird "feeling" when I take a nap, like in my head, lol. Can anyone relate to that? Then I feel sore all over. it's like I'm in and out of sleep and have to get up because of the gloomy weird feeling and muscle pain/pressure. This Abilify seems to make me tired too but I've only been back on it a couple weeks. The vitamin d deficiency is probably Mostly the fatigue culprit. I know I gained 20 lbs last time I took it but I remember it helping my mood and muscle pain levels so much. How is everyone ELSE tonight? :)
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
Sometimes a laugh is all we need to make it through the day.
I have lupus in my skin so I'm instructed to stay out of the sun.
Instructed lol I hear myself say that and I laugh. Like I don't know
My skin is on fire lol. I have no choice to take the pills. You can always
Go outside and play with the pets, I mean kids, I mean by yourself. Do the things today that you can even if it pisses off the neighborhood lol. Cause tomorrow they might be a work n miss it��
Stay we all! Keep posting and tell folks to come here and learn or tip the waitress. What ever makes you happy.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,529
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
I think everyone with fibro have low vit D . My fibro Dr is the one checking for this.so I don't believe fibro is just vit D levels. If that was the case everyone in the uk would have fibro.lol
 

Pollen

Member
Joined
Feb 6, 2015
Messages
11
Reason
DX FIBRO
Diagnosis
11/2014
Country
CA
State
ON
Is vitamin D levels something they check at a yearly physical? I am pretty sure my Doctor checks it and I have never had an issue that I know of but I also know some medications can also lower your vitamin D level like lyrica.
 

Wendywoo

New member
Joined
Feb 8, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
01/2015
Country
UK
State
Lancashire
I am newly diagnosed, and have researched on the net and found that many, many Fibro sufferers are also deficient in vitamin D, due to lack of sunshine amongst other things. I started taking vitamin D3 supplements immediately, and I have to say, there has been a slight improvement, although I haven't been taking them long - about 2 weeks now. I was also told that Magnesium deficiency also has similar symptoms, so I also take a Magnesium supplement, as advised by the Advisor in the Health shop. She explained that, years ago, we were ok with Magnesium, because the soil was rich in it, and that there were high levels in fruit and vegetables, but that now, due to poorer soil, and fruit and vegetables being transported from other countries etc., the Magnesium levels have dropped severely, and that more and more people were deficient now. I researched this on the internet too, and found that she was right - a great many people do suffer Magnesium deficiency these days. I think that we may be on the right track, here, as there is no proper explanation for Fibromyalgia, and many people do seem to have deficiencies in both these minerals. It could also explain the high levels of mental illness in the world, depression, anxiety, bipolar etc. Good luck with the D2.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
In have mine checked every 3 months.
Lyrica lower vit D. Good to know.
I don't take it anymore was on 2700 mg
A day. Got blurry vision first. Stopped taking
It per doctor orders. He said it
Can make you go blind.
Well had to go to eye doctor
3 months ago. Diagnosed
With cataracts in left eye.
Son he wants to do surgery
To remove lens. As effy is in the
Med to dilate your eye I can't have it.
I told doc my reaction to the effy that
It makes my blood vessels burst and not
Just expand.he said I'm so glad you stopped
Me because, your eye would have just exploded.
So the surgery is off. He won't even take a
Chance at it. I said I can get Anastasia. He said you
Have to be awake for the surgery.
Thats just how Cmetryme rolls.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
Vitamin D is not a typical blood test for a physical, though many docs will check if you have chronic pain.
 

SunnyinSD

Member
Joined
Dec 26, 2014
Messages
19
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
CA
Oh my Cmetryme! I'm so sorry you are dealing with that in top of everything else. I'm currently weaning down on my last 800 mg of Gabapentin. It's good you have your sense of humor still! I decided I better wean off the Gabapentin completely because my wc insurance won't cover it (or anything) anymore. Anyone have success with ongoing chronic pain syndromes and workers comp? Especially California? I've been on wc for 11 years and my work's ins company went bankrupt so now my case is with the state. It's awful, it's slow and they are not approving anything. One handed, depressed and in pain. Orthopedic surgeons won't touch me due to the risks (being one handed). :-(. Not that I'm for the or spine surgeries anyway ... But sometimes I'm so very very frustrated. I lost my job in October and I only think it was antidepressants and then narcotic pain Meds that helped me type. But at the same time the pain Meds probably also slowed me down, increased my adult add like symptoms and added to my mood swings that got me fired. I'm back on disability and so restless. I'm Going to contact a couple new wc lawyers to ask if I have a chance at a better "outcome" or settlement if we really had an advocate for my pain and didability. But now the attorneys fee would have to be split and everything feels like another pain in the "bum". I wanted to ask more about Vitamin D recommendations. I went to the local drugstore and bought a vitamin d3 as recommended by my doctor for 1,000 IU's and I saw the lil liquid filled pills. They were buy one get one free. Is there actually a prescription that I could ask about or should I even try a natural food store for quality? I think I bought nature made. I've
Been waking up with a little less upper back pain but my pain
Is still there with a vengeance if I ive do it. Sadly that's a quick housecleaning and maybe a grocery store run. :-(. I'm calling my psychiatrist tomorrow also regarding my Abilify side effects. 5mg and I'm either exhausted or restless and it's up and down everyday. Making me anxious. But I felt less pain when I was on it a year ago, so it's been 3 weeks and I m trying to hold on. Anyone with some experiences and advice, I love hearing it all.
 

Angelelle

New member
Joined
Jan 22, 2015
Messages
1
Reason
DX FIBRO
Diagnosis
10/2008
Country
US
State
NE
This is a bit of a tangent... But this is making me think of vitamin D and psoriasis. There's some research that says active psoriasis= Low vit D. Raise the vit d, no change in Psorasis. Make the psoriasis go away with another med - vit d goes back to normal. Psoriasis is an autoimmune condition, so maybe some common threads?
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
SunnyinSD, your doc can write you a prescription for 50,000iu D3 that is generally taken once a week for 8 weeks if your levels are deficient. Otherwise, you'll get D2 vitamins. Vitamins and supplements can be a bit of a crapshoot as they are not regulated and you are counting on the manufacturer to be honest about ingredients. Sometimes paying more is better, sometimes not. Sometimes you just buy what you can afford. I wouldn't worry about these vitamins. If you want to boost your D, look for vitamin D fortified foods like cereal or yogurt and sit in the sun exposing as much skin as possible without sunscreen for 5-10 minutes a day--you don't want to burn :). Since your name is Sunny, this might be an easy thing to try! Take care.
 
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