I also know that somewhere on this forum there is a post from a few months ago showing that Vit D deficiency is more prevalent in folks with Fibro and that it is believed to have an effect on how we feel pain ( which is the reason I first looked into what my Vit D levels were)
hope this is useful,
M
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Mrs_Somerset
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I sincerely hope that you are feeling as well as you possibly can be today? I have read the article with great interest, as my wife and I both take a Vitamin D supplement daily. We both take the larger dose tablets and unfortunately we both still have restless leg syndrome. I have it with my Fibro and my wife as a result of her MS.
I would really like to examine the study, to see how many people took part, what the conditions (both physical and emotional) were prior to the study and after the study, and also, what their circumstances were prior to the study? I am not saying this study isn't reputable, but I have read other studies about a particular products qualities only to find that the study was sponsored by a product manufacturer?
If you get any more information relating to this I would be very interested to read it.
Thank you so much for that, there were 155 patients in the testing, and they were consecutive patients so they were not fiddled nor hand picked. Out of the 155 (all had RLS), there were 119 who had low vitamin D, so that's is about 4/5 of the patients.
So the assumption is that low Vitamin D levels are present in the majority of RLS patients. It did point out that no studies like this had ever been carried out before. However, the was a commercial connection to this trial but that does not mean it is biased, it just means I will need to take this into account when considering the outcome.
Just like to say that vit D3 got rid of my tailbone pain, restless legs S., and sciatica leg pains, it also helps me spring out of bed in the morning (and also up out of chairs,) instead of being all stiff and achy and moaning.
My doctor prescribed me a small dose of vit d3 as my vitamin D bloods were low, after two days of dosing I realized that it had cured my painful tailbone pain, but only for around a week, then it came back slightly, so I checked out the Vitamin D Council and dosed accordingly, again within two days my tailbone pain/sciatica and RLS pains had all dropped away and I can now get up out of bed normally as before.
When I forget to take my D3 all pains come back with a veangance. I then start taking D3 again and it's all gone, too much of a coincidence for it not to be down to Vitamin D.
A friend this morning phoned me and laughingly said she wanted me to order her some D3 as it had done her creaking bones good.
You need to keep an eye on your blood level with vitamin D, (so careful not to over dose.) Vitamin D is a fat soluble vitamin, (again check out The Vitamin D Council for symptoms and info.)
Also (if you haven't already) take a Google at vitamin B12, another excellent vitamin to help lots of symptoms, many of us are unknowingly deficient in this one. It has helped both Hubby and I, also known to help keep Dementia and Alzheimer's at bay.
I think that is wonderful and I am genuinely delighted for you. I wish it was working like that for my wife and I? I do not have a coccyx, as I had an accident last year and after an MRI they said mine had withered away so it is constant pain in that area. I have damage to my sciatic nerve and so it doesn't really respond to anything except strong painkillers.
My wife takes Vitamin D as it is standard procedure now for anyone who has MS to have them.
But I am really happy that it is workign for you. You said when you forgot to take them, your pain came returned quite badly, it makes me wonder if you cannot store vitamin D?
Wow! never heard of a withered away coccyx Ken, not sure how that affects someone without one, is it painful also without one ? Sorry to hear your wife has MS, do send her my love, I remember seeing a remarkable video on You Tube 'Dr.Chandy and B12 deficiency' It was linked with MS, not sure if it would help though, but certainly an eye opener. Pleased she is on some vitamin D.
My bloods were taken, I was quite low in D, but soon it shot up quickly, Dr is pleased that my D is higher and still 'in range' even though I have not confessed to upping my dose to that recommended by the Vitamin D Council instead of what I was prescribed. (I will tell Doc one day when more Doctors find out how good D really is, I did tell Doc that vit D helped to partly cure my tailbone pain, even though my low prescribed dose left me in agony after a initially taking a weeks dose, it just wore off. Maybe I don't store it as I know that it only takes two days for D to either kick in or out of my body, were all different, but I have heard many say that before about 2 days and for my friend recently it has taken 4 days. How long does vitamin 'D' stay stored in your body, or how long should it, any idea ? Thanks for pointing that one out.
I made a post about this going back a bit, and two other members approached me as they too had no coccyx. It is very painful and leaves you with nerve damage. I have to use a tri-walker as I have very little balance.
Funny you should mention vitamin B12, as I am having a blood test tomorrow to check mine? As when I get exhausted I have memory and confusion problems. I do not know how long vitamin D stays in the body for, but I can imagine that it is a long term thing unlike vitamin C, as many countries are prone to having little sunlight for days on end? The reason I mentioned it to you maybe not storing it was because the effects were so quick when you never took your supplements, it maybe be something to discuss with your GP?
You can buy B12 high strength Patches (like small sticky plasters which gets to the bloodstream fast. Hubby and I use these, you cannot overdose on B12 as it is water soluble and excess flushes out your system, but need to google B12 yourselves, Japanese and a few other countries keep their people's B12 bloods above 500 to stop Alzheimer's and Dementia. B12 conects to Pernicious Anemia and on that forum on HUnlocked I have read that many eventually find out they do have PA even though their bloods are showing 'within range. Hubby and my bloods were down in the 300's and we both were feeling tired all the time even after a nights sleep.
Did you go on 'You Tube' to see 'Dr Chandy and B12 Deficiency ? The lady in it was suspected of having MS, the video is amazing. I think a high dose of B12 would be good for your wife too as MS is linked to B12 deficiency.
Also did you know that B12 mimics Hypothyroidism ?
Will just add that my friend said she wouldn't mind trying some of my vitamin D3 to see if they could help her. After just one day she laughed and said I wouldn't believe it, but she felt slightly better, day 2 she reckoned even better, day 3 better still, by day 5 she said today she can now get up out of bed or a chair without moaning and the usual stiffness in her hips ,bum and tops of legs have gone. Now my other friend who did not agree with my other friend taking these pills has asked me to get her some for her Hubby who has sciatica and top of hip/leg pain.
Wouldn't like to bet on the outcome, but certainly worth a trial run.
Good to hear you are having some bloods done.
.
Hi Mrs_Somerset
I was wondering if you are thinking that Fibromyalgia patients are likely to have both Vitamin D deficiency and RLS as well?
Speaking from personal experience,
I have been taking colcalciferol for a couple of years now and when I was diagnosed deficient in vitamin D my levels were so low they couldn't tell how long I'd been deficient for
I was told I'd be on supplements for life.
I was diagnosed with Fibro a couple of years later secondary to my Hypermobility Syndrome. I believe I have had episodes of restless legs though never diagnosed as such but I now take Pregabalin to help keep the spasms to a minimum. In response to my pain receptors overloading my body goes into spasms and can be quite harsh at times too, so I can understand why there may be a link as it is in my opinion a normal neurological occurrence for spasms to happen as a result of the pain receptors overloading. The Neurologist told me that when I was in hospital experiencing the above spasmodic ordeal and it makes sense to me as Fibromyalgia is a chronic pain disorder meaning our bodies do not process pain properly Thus meaning it is more than likely for us to have these other conditions as well.
At the same time of diagnosis I was told by the pain consultant that it was very likely that I had Fibro for a long time and couldn’t gauge how long, so the chances are I’ve had it for best part of 20yrs.
My Vit D level could also be low because of my HMS and the fact my skin doesn't absorb it properly so it leaves it open to suggestion again, for me obviously! as this is my personal long term experience of Chronic pain.
My synopsis based on my own personal 20yr history is that it is a plausible theory but only further research into it will prove it one way or the other.
Regarding the link between Vitamin D and RLS the article is very interesting and thank you for sharing it with us.
I'm not sure if this is the post that you were looking for but it is by Mdaisy discussing Vitamin D
I had not seen the link you posted before, it is very interesting reading.
The post -(found it finally) that first got me looking into my vitamin D, regarding pain, was this one, in the article from arthritis UK - I gave it to my doctor and he dismissed it without reading it, saying everyone's vit D levels vary from time to time, and promptly refused to test my vit D levels. I did the test privately and am now on vit D replacement.
I too am wary about taking suppliment statements at face value, and I think "the author" made a very valid point the other day, stating that you need to look into WHO did the research, as sometimes the research is carried out by the companies who wish to promote their product, and therefore the whole exercise is biased fromt he beginning.
I must say, however, that on just a couple of weeks vit D at 5,000iu/day, plus a top up of my B12, along with taking magnesium, selenium, zinc and l-methylfolate, I am feeling a change already and hope to be heading in the right direction.
however, I also found, that taking Louise Warville's (thyroid UK) advice of WHEN to take my thyroxine, has decreased the amount of thyroxine I need ( from 150 to 100/day) in less than a month, so that is also important.
everyone is different, but if there is a chance that a little vitamin can help reduce the pain, nd perhaps reduce other symptoms, I am happy to give it a go
as I have pernicious anemia, and hashimotos, I appear to have difficulty absorbing vital vitamins and minerals. I would always look to take the natural form of a vitamin or mineral( i.e I have banana smoothies to get my calcium and potassium) and always thought my healthy eating ( barring the occasional home made cakes) would have seen me right, I would not have contemplated taking suppliments.
However it turns out, since my autoimmunity kicked in, I am not absorbing things the way I should and need a little help, however the info on Health unlocked has helped me so much, as there aer so many different types of suppliments, many are useless, and some are detrimental ( i.e. folic acid is bad for me, whereas methylfolate in the L form is good for me)
I do love this site and am ever so greatful to everyone who takes the time to write to me with their experiences, and shares their info - it my not all be right for me, but it might help someone else feel a bit better each day, and that is all we can hope for, are some good days -)
It's funny because I remember that post by Mdaisy because it got me thinking back to the old days when they cooked things in Lard all the time and now it isn't included in our daily diets and vit D levels are now considerably lower than back then.............. Does make you wonder doesn't it?
The article from arthritis uk is an interesting read too
Glad the link was interesting and crikey you have a lot going on, I thought I had but compared to you not as much I don't think.
My problem is that I don't know what normal is so when they ask and I say things appear normal it might not be as what is normal for me isn't normal for someone else
Vit D didn't change much for me except I can now grow my nails really long and they're a lot stronger/tougher! LOLOLOL they grow really quickly too
Thanks for the feedback it is always good to hear how helpful this forum is for our members
Wishing you wellness and sending fluffies on repeat script to you
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and they're a lot stronger/tougher! LOLOLOL they grow really quickly too 
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