For all my fellow fibromyalgia pet talkers....PLEASE READ...

[carole]

Yes i am aware that vitamin D deficency is quite serious really as it can lead to many potentially serious health problems.

Another problem for me is diet wise, i am unable to eat any fish, as i am allergic, another source of vitamin D, i have been drinking a milk with added vitamin D for over a year now, but you would have to drink ten tall glasses a day of that to even come close to the daily minimum, well i went out and got my ten minutes sunshine today, although it is a really cloudy and blustery day here, wind is strong,but i will do my best to get this right, i need to take the medication first though and take it from there with another blood test in three months time.

I have heard of the drug you mention, it is not available here in NZ, i have had fibro for over twelve years, and i prefer not to take any drugs, at first i was given amitriptilene (excuse spelling), it was digusting, it made me feel terrible, never again, i only take panadol, which is an over the counter pain relief for headaches, etc, it helps somewhat, but not a lot,other than that i try to exercise a little and eat healthy.

I do wish you well and hope you find that the new drug does indeed help you, BTW have you had your vitamin D tested to make sure the levels are ok,? i strongly advise you to, you never know eh?
I figure it will help my fibromyalgia when i get that sorted, as it can cause you to have very similar effects like the aches and pains, of course fibro is much more than that,very complex illness,i have had extreme chronic fatigue lately, which i do get from time to time with the fibro, but it has been un-relenting, but now i discover my lack of this vitamin can indeed cause that too,never ending it seems, got the low iron sorted , now this, ho hum, at least i can fix it, that is the good thing.

Just wanted to add, about the magnesium theory, i am not sure myself if i entirely agree with this, but honestly everyone is different, there are not two people alike with fibro, some have it mildly, some severly, and what helps one does not necessarily help another, you have to try what you think is best for you and see if it works,there are a lot of alternative ideas in regard to helping our condition, but i do not have that kinda of money to spend on them.
Some offer only temporary relief, i have tried acupunture and yes it did work, but again it was only a temporary thing, soaking in a spa pool with the jets strongly pulsating on your body, is painful, but i found if you can get through the agony, you get the relief later, again temporary,it is trial and error with this complex annoying and disabling illness.

I would like to question the medical profession about this, if they know already that a deficency in vitamin D is linked to things like Crohns disease, ulcerative colitis, cancers and fibromyalgia, then why are they not testing these people when diagnosed immediately for their vitamin D levels, man oh man i would be livid if it were found i had suffered in pain for 12 years and it were found that it was my vitamin D deficency that caused it, part of me would be over the moon to know i would be rid of it, but i would be very upset to think the medical profession knows this and yet does nothing to ascertain whether it is the reason or not. grrr......

[Daisy and Delilah]

I've never had my vitamin D tested that I know of. I just had bloodwork done two weeks ago. I go for my physical this Friday to hear the outcome. I'll mention it to the doctor.

I'm not so sure about the magnesium thing either. This lady is the only person I know to have had the treatments. If it works so great, you think they would try it on everybody. I bought magnesium tablets after hearing the success story and they didn't effect me at all.

I just responded to Slick in the thread I started for Lyrica. This is supposed to be the only medication for people with FM. After reading Slick's info on it, I'm not thrilled with the side effects.

Carole, the fact that doctors don't readily test people for vitamin D levels and other simple things, makes me wonder if alot of them even know what they're doing. I once met a lady with extremely severe psoriasis. She accidentally discovered that vitamins A and D would clear up her skin in a heartbeat. She self medicated and cleared her skin. None of her doctors had begun to have answers for her. It makes us wonder.

Carole, I wish you the very best and I can't wait to hear an update.

[carole]

yep sadly sometimes the side effects are worse than what you are being treated for,only you can decide if it is your drug of choice.

Just remember one thing, every drug has a list of side effects, some over twenty and you may not get any,or if you do only a few,so don't be too put off by that ok. i take somac for Gerds gastric reflux, the side effects are many, and i can't say i have noticed any, so good luck .

Yes i read about that skin condition being treated with Vitamin D,lack of that vitamin can cause so much, it amazes me, I won't beable to give you much of an update for a while, as it will take at least three months to get any improvement if there is any to speak of.

Do ask for the test, even those without fibro should be requesting it, it is becoming so common, because we are all using sunscreens so much to avoid getting skin cancer,caught between a rock and hard place, i think if i go out for ten mins a day when the sun is not at its worst i should beable to get enough,it is a pity i have to take the supplement first, but that is what i have to do.

I honestly don't hold out much hope that my fibro is due to lack of this vitamin, as i said before i have had it so long now and if my deficency had been happening that long, i think by now i would have developed some rather serious health issues,but one cannot exclude it all together, i still hold onto a glimmer of hope in that department.

[Catty1]

While I was looking thru the links, I read some suggestions that a good Vitamin D supplement should come from a fish oil source. Good old cod liver oil?

The dosage I read for Canadians over the age of - 6? - was 1000 IU

I think I'll try it anyway!

I really hope this works for folks who try it!

hugs!

[carole]

yes unfortunately i cannot take that because of my allergy to fish, i took the pill last night, and this morning i feel sick, nauseated, so i checked on the internet and sure enough that can be one of the side effects, i hope it does not last for too long, i only take one pill per month for three months,feel like i might be visiting mr porcelain today, but hopefully not eh?

[smokey the elder]

I think a small exposure to sunlight will allow your body to synthesize enough vitamin D while not unduly increasing your risk of skin cancer. I know the high latitudes can be a problem. Is there a synthetic D that you can get which is not extracted from fish oil?

[momoffuzzyfaces]

I'll be sure and talk this over with my dr in Jan. Since I've been allergic to milk since I was 25, I always take a calcium suppliment with D though. I also take a mulit-vitamin every day. Maybe we with fibromyalgia would need mega doses though.

[Chica]

Carole,
That was a very interesting subject. Whenever I go to the doctor's I allways insist on other things to be checked for me, and they do it. People have to speak up when they see their doctor.

[carole]

Yes you sure do, one has to look after themselves, let's face it you are not much more than a number to the doctor's really.

I think this info is especially important to people who have just been recently diagnosed with Fibro, unfortunately i do not hold out much hope for those of us who have had for years, like myself,as i pointed out before if we had a chronic vitamin D problem for all those years, i would be having some other serious health issues by now, surely.

I have passed this on to my girlfriends sister, as she has just been recently diagnosed, and apparently she does not go out in the sun much and is dark skinned, so one can only but hope.,would be great to hear that someone only had a vitamin D problem and not the fibro wouldn't it?

Anyhow no symptons from the pill today, infact the nausea eased as the day went on, the doctor advised me this would happen, so glad about that.

Take care everyone,hope you are not feeling too awful today, gentle hugs.