Vitamin D Deficiency

Following a talk given by a GP at the recent vulval pain conference, in which he cited vitamin D deficiency as a major factor in people with chronic pain, I decided to get my vitamin D levels checked.

Depending on where you look online, the optimal levels of vitamin D in the blood seem to be about 30 – 80 nmol per litre. Below 25 is considered deficient. I’m at 22.

Research has found that people with chronic pain are more likely to be vitamin D deficient – at one clinic 93% of people with chronic pain were found to be deficient.

Also, people who are deficient need nearly twice as much medication to control their pain as non-deficient pain patients.

As more research is done, vitamin D deficiency appears to be a problem affecting the wider population, not just those of us with pain (see this article: http://www.dailymail.co.uk/health/article-1351422/Five-volunteers-Vitamin-D-levels-tested-results-shocking-Theyre--Generation-D.html). Vitamin D is made in the skin from sunshine so if you don’t get much sun or like me are really pale so slather up with sunscreen, you’re probably at risk. Also, anti-convulsants such as gabapentin and pregabalin, which many of us are on, break vit D down more quickly. Fibromyalgia also seems to be linked to D deficiency.

I’m going back to my doctor shortly to work out a treatment plan, probably involving dosing up with vit D supplements.

Although research is still ongoing, I’ve read quite a bit to imply that getting our vitamin D to the right level could help us peeps with chronic pain, so I would say it’s worth getting checked. It’s just a simple blood test & the supplements are relatively cheap, should you turn out to need them.

I’ll let you know how I get on!

Here are some interesting links:

http://www.healthyfellow.com/302/vitamin-d-and-chronic-pain/
http://www.webmd.com/pain-management/features/vitamin-d-deficiency-and-chronic-pain-link?page=2
http://news.bbc.co.uk/1/hi/health/7553833.stm

I'm joining you in the experiment - after reading your post on the VPS conference, and about half an hour of googling to check it was supported by some evidence and that there are unlikely to be any problems taking extra vit D, I went straight out and bought a pack of pills. No idea what my levels are like (feel like I've used up my quota of nhs appointments for a while...), but with the short UK winter days, an extra boost won't go amiss

Yay! I know what you mean; as most people are probably deficient anyway I don't think it'll do us much harm to dose up. It seems that you need to take loads to overdose. How much do you think you will take? The GP at the conference recommended 1000 - 4000 units / day as a conservative dose. I'll let you know what my doc recommendeds once I've seen him in a couple of weeks. Here's hoping it helps! x

I've been taking 25micrograms/day, which I think is 1,000 units. This is what the recommended adult dosage is on the instructions, and as I haven't had my levels tested I thought it best to stick to that. I'd be interested to see what your doc says - is it just your GP or a gyno/pain/other specialist? x

Sounds like a plan. It's my GP I'm seeing, he's been really good throughout my whole vulvodynia experience and pretty much goes along with whatever I ask! Tbh I was just gonna start dosing up when I got my results but the lady giving me my results said he specifically wanted to see me, so I figure another couple of weeks won't hurt. It seems like it can take anything from a couple of weeks to a few months to see any results from supplements, but either way it certainly can't hurt.


Here's another link I forgot before, it's a huuuuge review of studies done so far on vit D & chronic pain, if anyone has a spare few hours lol:

http://pain-topics.org/pdf/vitamind-report.pdf

I've just gone out and bought my supply of vitamin D tablets.

Thanks girlies!!

I went for a routine physical last year and vitamin D levels were waaaaaaaaay below normal. I never considered for a moment that that could be linked to my V pain. I've been taking vitamin D since, but I am going to be more vigilant now!! Thanks gals!

Saw my GP on Mon and he gave me my (whopping) vit D prescription... 20,000 units per day for 3 days! Yowza! Then to take a 1000 unit supplement per day from then on. That seemed really high but apparently it takes a while to sort of dissolve into your system (I'm so not a scientist o.O) and in one study I read, people with back pain were on 10,000 units a day for 3 months with no ill effects, in fact their pain got better. So yes. Taken the first dose so far. Fingers crossed!

I hope you find some relief! Let us know how it goes.

I take vitamin D daily and while it doesn't help my pain it does make me less prone to catching every cold that comes within a 100 mile radius of me!

Has anyone been having any luck with their Vitamin D taking?

Over the last 10 months, and for the first time in 3 years, I've had varying levels of pain to the point where I've had several months pain free and could have a normal life. And sex life for that matter!

The only correlation I found between me getting better,then worse, then better again was my Vitamin D intake. Every time I ran out and didn't bother getting any more my pain returned. When I started taking them again it went away.

Now, I was better about 6 weeks ago, then I stopped taking the vitamins. As a result for the first few weeks of this month I was in pain. Now I've got some more and I'm starting to feel better again. The pain is still there, but I can have SEX!!

I hope I'm not jumping the gun here, and I'm touching wood like crazy, but in three years this is the only thing that seems to be making sense. However, if this is all it's taken, just a little vitamin, that could have saved me 3 and a half years of agony, then I'm sooooooo angry!

I just don't understand how (if it's true) that the multitude of GPs, consultants, gynaecologists and even surgeons couldn't have found this out?

This thing really messes with your head doesn't it...

Jemima
Thats amazing your pain has gone with vitamin D. Im going to the health shop 2moro to get some. If thats all it is. I'll try anything im going through hell bcos of this wicked evil condition. I have researched and it seems vitamin b12 also plays a part as it affects your nervous system. Hope you continue to be pain free x

I've heard something about b12 too but I've not tried it. Maybe a combination could work well then?

I'm also taking 600mg of Pregabalin a day so I think the vitamin d must just work well with that because the pregabalin alone did nothing.

I hope you can dose yourself up on vitamins and get a miracle cure, we all need it!

Ive just started taking pregabalin at 75mg twice a day just uped it to 150mg twice per day until i get to 300mg twice a day. Did it give you side effects the higher the dose? I feel really dizzy and tired! Im taking amitriptyline as well at 40mg per day as well as fem dophilus, b12, cranberry and dihydrocodine for the pain. Was your pain constant? Mine came about 3 days after sex and never went! I did have ecoli water infection I dont know if this caused or what. I want to find the cause then it can be treated properly. Do you know why your was caused?

Hi Jemima
So pleased that you've found something that works for you! I do think there's something in this as i think its helped me too. I was recently tested for my hormones and vitamin levels. Some things like vit D and B12 were right at the low end of normal so although the 'official' verdict was 'no further action required' I decided to be more focussed about my vitamin intake (previously i just took a bog standard multi vit). So I changed to Magnesium-OK (mainly for the higher B vit levels and the magnesium) and also started taking vitamin D drops, and extra zinc and vit C. I've definitely improved since i've been taking them (2 months) and am having more normal days (and touching wood like you!) and I think the vitamins have been one factor.

I have a couple of questions:

What is your daily dosage of vit D and what form do you take? I take 4 drops of Sunvite Vitamin D3 (recommended dose is 4 to 10 drops daily). Maybe I should increase my dosage?

Also, have you been doing anything else that might have helped towards you feeling better? For me it's pelvic realignment, pilates and yoga. How fantastic (if understandably frustrating after all this time) if vit D is your simple cure! With me I think its been about getting my whole body back in balance, in all senses of the word, which has needed me to use a variety of approaches.

PS Kate, I also read somewhere that B vitamins are essential for repairing nerve cell damage and to help nerve cells function properly (very relevant for us vvd sufferers!) which is why i decided to try and up my levels of these too.

Vit-D defficency mostly effects our bone. You can get it in your meals and also you can get by seating in sun, as it get manufactured in our skin when sun lights falls.

Kate1981 wrote:Ive just started taking pregabalin at 75mg twice a day just uped it to 150mg twice per day until i get to 300mg twice a day. Did it give you side effects the higher the dose? I feel really dizzy and tired! Im taking amitriptyline as well at 40mg per day as well as fem dophilus, b12, cranberry and dihydrocodine for the pain. Was your pain constant? Mine came about 3 days after sex and never went! I did have ecoli water infection I dont know if this caused or what. I want to find the cause then it can be treated properly. Do you know why your was caused?

Strangely I found that I had side effects (dizzy, felt drunk, clumsy) at the lower doses, but now I don't have that at all really. Well, I'm still a bit clumsy. The only thing I've noticed with the 300mg is the slurring of words. That's been with me since around the 200's and has stuck with me. It's annoying to say the least, but I hardly notice it now. The Amitriptyline was horrific for me though, I got more side effects from that than I ever did with the Pregabalin.

Loulou wrote:
I have a couple of questions:

What is your daily dosage of vit D and what form do you take? I take 4 drops of Sunvite Vitamin D3 (recommended dose is 4 to 10 drops daily). Maybe I should increase my dosage?

Also, have you been doing anything else that might have helped towards you feeling better? For me it's pelvic realignment, pilates and yoga. How fantastic (if understandably frustrating after all this time) if vit D is your simple cure! With me I think its been about getting my whole body back in balance, in all senses of the word, which has needed me to use a variety of approaches.

I take two 400iu tablets every morning. I think they recommend only one but I've always taken two. I've been meaning to get round the doctors and question it with her but I've not had time, and since I've been doing so well I figured why rock the boat?

The only other thing I've been doing is I had a course of acupuncture for six weeks, but that finished about five weeks ago now. I think that did help somewhat though, so I'd imagine a combination of all three has gone a long way to helping me!