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

[carole]

I just wanted to pass some information on to you all,(some of you might already know this, but i did not, and no doctor ever tests you for this when you have fibro) i do not intend to give any false hope to anyone, but i thought you could all benefit from this information.

I have just had my final blood test result, which shows i am very low in Vitamin D, in other words i have a deficiency,yes i do not get outside much,and i am fair skinned and the rays are murder down under, so i try to stay out, and not get skin cancer,however this is the drawback i guess.

Normal levels are anything between 60 and 200 ,mine is at 25 which is rather low., i will require medication for a start,not sure for how long or how it all works,but as my mother has the same problem i am sure she can give me some details.

On doing some internet research on it, i found to my amazement a big connection with Fibromyalgia, alot of people with it do have this deficiency, and there is even talk, that some people have been mis-diagnosed with fibro when it is purely a Vitamin D deficiency.

I have to say i feel kinda of excited to say the least, what if and it is a big what if, this is what is causing mine, however i am realistic i have had this problem for over 12 years, and i think had i had the vitamin D deficiency that long i would have more severe health related problems, but i can only get hopeful, and the point of my posting this thread is if you have fibro and even if you don't get the doctor to check your Vitamin D levels, it was upon my insistance, not the doctors that i even had this checked, she almost dimissed my request as she said it is more in dark skinned people, how wrong was she Huh?,you sure have to take care of your own health these days.

Anyhow it sure gives food for thought,worth finding out i think and i am very hopeful, it would take months of supplement before there would be any noticable difference, but i am so hoping this might be the case,even though i am seriously doubtful, i have hope. Cheers. :)

[Catty1]

Actually, after many months or even years of rumours regarding Vitamin D's marvellous benefits, a real STUDY has finally shown that daily Vitamin D prevents not only the likelihood of cancer, but many other chronic diseases.

http://www.cbc.ca/health/story/2007/09/11/vitamind-study.html?ref=rss

Same but different: http://www.cbc.ca/news/background/health/vitamin-d.html

http://yourhealth.calgaryhealthregion.ca/Topic.jsp?GUID=%7B2D84CB6E-4590-45C2-9D9C-FD5F363598A5%7D

http://www.connecticutcenterforhealth.com/fibromyalgia-treatment.html

Carole, in searching these links, I have found reference to taking enough magnesium as well. Have you heard anything about this?

I hope you are on your way to feeling better very soon! :)

[Daisy and Delilah]

This is really interesting, Carole. Thanks for posting it.

I was watching one of those morbid obesity shows one time and there was a mention of a problem like this. A man in the US that was severely overweight, was crippled with excruciating pain in his legs. After extensive tests, it was determined that he had a serious vitamin D deficiency. I would have thought his weight was the only problem but it wasn't. After vitamin D therapy, he was able to walk fairly well. He was a fair skinned man and also had problems getting out in the sun.

Candace, I have a friend that was diagnosed with fibromyalgia. She was given a series of injections of magnesium. It changed her life. She went from crippling pain to being almost able to do anything.

Carole, please keep us posted on how you're doing. I am hoping and praying you get some relief.

I started taking a new med today for pain. It's called Lyrica. What a coincidence that you posted this, Carole. I was going to start another thread about this drug and see what feedback I could get from any users on the board. If anyone takes it, please let me know what you think about it. :)

[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...... :mad:

[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.

[carole]

well according to the pharmacist,this is not a known side effect of the pill i am taking, so maybe it has nothing to do with it, maybe my ticky tummy has flared up again, will know for sure if next month it does the same won't I?

They still recommend not taking the risk with getting skin cancer, but putting sunscreen on stops the vitamin d reaching our bodies, i am in a catch 22 really, she says i can take this pill long term, but i would rather not myself, i am worried about spending ten mins a day in the sun without sunscreen though, our rays are the worst in the world here in nz, even worse than oz,and i am fair skinned, i am scottish after all, so i don't really know what is the best thing for me to do really.

You can get vitamin d from eggs as well, i do eat eggs but limit myself to four a week, for the cholestrol side of things, mine is great and i want to keep it that way.

Well folks if in months time my fibro has improved or gone away you will all be the first to know, i will be celebrating that for sure, however i am not holding my breath, but i am hoping there will be an improvement in my fatigue levels and pain all round, so here's hoping. :)

[momoffuzzyfaces]

If your fibro goes away, we will be celebrating with you!!! :D

My dr always says he wishes he had a cure for fibro. I tell him there are lots of us that wish he did too.

[carole]

yes well until they actually find out for sure what causes it, a cure is a long way off i think, they have all these ideas but nothing in concrete as yet.

[K9karen]

Thanks for the info, Carole. I had just had a physical, so I called the nurse today to check on my Vitamin D and she says I'm fine. Luckily, I've been in remission recently. but from past experience, a severe weather change causes a flareup. Another burst of luck, it's only been chilly a few days but it's suppose to rain for 2 days starting Wednesday, so fingers crossed. Gentle hugs to all of my fellow fibro suffers.

[Daisy and Delilah]

Let me join in in sending out some gentle hugs from me to all my fellow FM sufferers as well. Some day, I hope we're all pain free. :)

[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. :)