Vitamin D

[Sian10]

Does any one else suffer with low vitamin D ? What I would like to know is does it make any difference to your symptoms like make it better ?

[Hidden]

Hi Sian10 ,

It would make you feel fatigued, cramps, muscle and bone pain, I have to take vit D daily. Hope this helps.

[Sian10 in reply to Hidden]

My Gp thinks once I take it I will be back to normal ie feeling ok and back working ? I think I won’t it will just ease it a bit or nothing at all he didn’t understand why I’m not sleeping he did a sleep question air and had no score lol which he couldn’t understand, I’ve told him I wake cause of the pain he just doesn’t get it xx

[Hidden in reply to Sian10]

Erm no, it’s not as simple as yep take the pill, and boom it all goes away, awww how we all wish.

I still have pain, no sleep or hardly any, pain and cramps, and cfs, he obviously doesn’t understand fm. Do you see a pain specialist, or attend a pain clinic?.

[Sian10 in reply to Hidden]

No been waiting since Oct to see the rheumatologist xx

[fenbadger]

Yes and a bit but not much. My vit D levels were checked and GP said they were low. Dont think thats very helpful, but a few years on it may now mean the difference between bearable and unbearable

[saluhouse]

Hi Sian10. I’m not sure if taking vit D has helped my fibro. But having low Vit D did contribute to my osteoporosis and subsequently the breaking of my hip 3 years ago. I now take it every day - with no side effects.

So, on balance, think it is worth taking the Vit D pill regularly. Especially if, like me, you find sitting in the hot sunshine quite unbearable. I’ve only recently discovered that this odd aversion to hot weather is possibly due to fibro. (I only say this because I read on this forum that some other sufferers also dislike being too hot)

Xxx.

[Sian10 in reply to saluhouse]

Thanks for reply he seems to think if I take vitamin d I am going to be ok again I don’t think he understands how bad I have got in the last 8 months even my husband had said I’ve got worse since September and if he’s has noticed then I have a problem lol xx

[saluhouse in reply to Sian10]

Hi. As I said - vitamin D might help but is unlikely to solve all your fibro problems. If only!!

After many years of trying to find an answer, I think it needs a multi pronged attack. In my case - cleaning up my diet helped. Sugar/alcohol/coffee/fungal foods (such as mushrooms and blue cheese) seem to have a really bad effect.

I take quite a lot of vitamins - co-enzyme q10 and Vitamin E really do help. And acidophilus seems to be a plus.

And I’d like to thank everyone on this forum who recommended a weighted blanket. I was very sceptical as to how it would help - but all I can say is I have slept a lot better since using it.

Not saying I have cracked the Fibro code - but every little improvement helps a bit.

Xxx

[sidsue in reply to saluhouse]

Yes I have fibro and ostio arthritis and possibility that I have lupus too ..but love the son as I get older I do find I cannot sit in the sun so much but would rather have sun than cold it depresses me..

[giraffe8 in reply to saluhouse]

I too suffer so much with the hot weather and the brightness of the sun. Really struggled last summer when the temp was in the 30 s , had to fix tin foil at all my windows to keep the house cooler. I am not good in extremes of cold either. My gp says most people in England have low Vit D levels.

[Hazel_Angelstar Administrator FMA UK Staff]

I have had low levels in the past, didn't make the slightest bit of difference to my fibro pain when I got levels back within normal range.

I now take OTC vitamin d throughout the year to keep my levels boosted

[Han1976]

Yes I do, I take supplements - not sure if they work but I was told I needed to take them x

[Nelly1]

I take them, more so during the winter months. I take ones recommended by a pain specialist.

Vitamin D3 extra strength.

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[Mille21]

Hi Sean 10 it really annoys you doesn't it when you feel fobbed off I was on very high levels of vitamin D from doctor as my levels were low didn't make a bit of difference thee levels are ok now apparently but do take otc ones as you are supposed to take them anyway apparently sorry to say I've tried everything injections infusion different medication I am now waiting to see if pain clinic will prescribe morphine patches for me xxhope something helps you p.s.I bought a weighted blanket but found it too heavy now have a child's one which is better xx

[Ijo1]

Hi.

I take vitamin D everyday. I started taking them 18 months ago when discovered that levels were low. A friends brother who is a doctor suggested I add cod liver oil, a calcium tablet and a vitamin C tablet each day. I did this and within 2 weeks found that I was more alert than I had been for months. I wouldn't say it has taken any pain away I just feel it has helped improve all symptoms by giving me back that little spark for life if you know what I mean.

I can only say give it a try and see how you go on.

I have to agree with other comments about not being able to sit in the sun and feeling to hot. I joke that my internal thermostat is broken. To the extent that I have worn shorts and tee shirts all winter while the rest of the family have jumpers and fleeces on indoors as well as the heating.. I'm hanging out of the windows...

Have a good day everyone.

[Monicka in reply to Ijo1]

Hi Ijo, I discovered I have vitamin D deficiency too. My level is 39 nmol/l (minimum should be at least 75). How long did it take to you to get it right after you started taking supplements? I started taking fish oil.

[Ijo1 in reply to Monicka]

Hi Monicka. It took around 2 weeks for me to notice a good improvement in mood and energy. Maybe a little less pain but I still have bad days and just had 2 in a row that absolutely floored me with the pain. I couldn't even get up or down stairs easily.. I hate those days. However they always end. The vitamins help with general health and mental health I find... hope that helps you in some way. Ij

[CarolineJO]

I also have low vit D and take daily supplements. My fibro is very much still here, there may have been a mild improvement, but like fenbadger said, from unbearable to bearable.

[Sian10]

Thanks everyone for your reply’s much appreciated xx

[Bambi60]

Hi Sian, my GP discovered vitamin D levels were very low before diagnosing FM. I take vitamin D supplements every day - and try to get some sunshine (when possible). The supplement may not help so much with the FM pain, but without it my bones feel like they are burning - a sensation that is extremely unpleasant.

Hope you try to take a supplement even if it's just over the winter months where there's little sun. Take care xx

[Sian10 in reply to Bambi60]

Thanks will do I got blood test next week so will have vitamin d then it’s just that my GP thinks it will solve everything x

[foxkennedy21]

Hi Sian, because we live in a cold country without continual sun we are all advised to take vitamin d, I don't have fibromyalgia but I do have other health conditions and I was praised by my dietitian and doctors for taking vitamin d. It will help bone strength really and lots of things besides. I hope you take it, it will not do you any harm unless you're allergic to it.

[aytias]

Supplements are not manufactured to the same standards as drugs. Drugs need to be 99% pure. Supplements don't so you might end up with i.e. 30% of the advertised vitamin d in one batch and 130% in another. Try to find good quality supplements and if possible marked as pharmaceutical grade.

[Midori]

I find it helps me, it is reputed to help pain in Fibro. Vit D is an essential vitamin that we get from sunlight, where it acts in the Vitamin A in your skin, converting it to D.

However, some folks, especially those who cover up a lot or don't like the sun, elderly folk in care homes who rarely see daylight, or if ladies are approaching menopause can't get enough of it, and it is needed to keep your bones strong, especially as you age.

People of colour have trouble in UK, as the sunlight is not strong enough and the skin is dark, so conversion of A to D can be hampered, it has recently been reported by doctors as a side effect of lockdown and Covid.

Rickets, a disease of bone, where there is too little calcium in the diet results in badly bowed legs, etc, and was common in Victorian times where folk had problems getting enough nutrition.

Your doctor can take blood tests for your levels and advise if you need it.

Cheers, Midori

[BreezyGeezer]

Hi there Sian10, I am Vit D Deficient as well. I take a supplement but I have not noticed any improvement with my fybro symptoms whether I take the supplement or not.

[mhigton]

Most people in the Northern Hemisphere are likely to be deficient in vitamin D due to our limited access to good sunlight and our habit of applying sunscreen when there is sunlight available and I believe the recommendation is that we should be supplementing to counter this with 400 iu (international units) a day. However, many experts believe that supplementing at that level is still insufficient.

I have never heard it being suggested that it would help with Fibromyalgia but it does have an impact on bone health and our immune systems ability to function. As you may know there is thought to be a link between low vitamin d levels and mortality from covid 19 although this has yet to be proven to the best of my knowledge. Vitamin D is also thought to be helpful in mitigating the worst symptoms associated with covid 19 infection and many 'long haulers' have reported that it helps them. There are many youtube sources that talk about these issues and I would particularly recommend Dr John Campbell's channel to you, he has produced a number of really informative videos on this topic.

[Sian10 in reply to mhigton]

Thanks will have a look x

[bolshiesaf]

In my case it has but Drs know nothing in this country about Vitamins etc gave me 400ui per day after an initial 5000 per week.

So I researched myself and found out that although at the time my area range was 50 to 250 (later changed to 30 to 250 too many people getting Vit D3) and I had 14 400ui would do nothing. I take up to 12000ui per day depending on how I feel usually 9000. I also have Vitamin K2 as found part of my pain was calcium forming in the wrong places in muscles and bursas. You also need to make sure magnesium is ok so I have that as well again I know when enough in my body. note I do not use tablets but sublingual as have problems with tablets. Make sure that you get D3, not D2. When low causes lots of tingling and if high upsets my stomach. You need to learn your own body. After this, he refused to check as it was over 80. WHO suggests 80 plus but the Drs I have researched have suggested those with autoimmune problems like Thyroid, Diabetes, Asthma etc would probably need a higher level more like 120 to feel any effect. I am not surprised really as always feel better in the summer just not great this last summer even though staying at home indoors more definitely better than in previous years. Oh and in respect of sleep it is an issue but the more you do the more you will sleep I drink herbal sleep tea at night and have sleeping pills now as just could not get sleep right

[Chrisbel]

helps me sleep if I take vit D3, K2, magnesium glycinate, and B complex an hour before bed

[heartbreaker]

Hiya I've recently found out that I was low on iron & vitamin D? I've been put on tablets for both its only been a couple of weeks but I think it's helping but slowly? Hope yours settles down soon, take care....

[JayCeon]

I've been on prescribed D3 for years now, high dose, 20,000 I.E. once a week, long before the fibro-diagnosis. Some alternative practitioners do suggest taking it daily, but that's not study-based. Also B12, which I finally put up to a 5mg belly injection once every two weeks. Got my B12 level sky-high, my docs grinned (1700 instead of 'max.' 700). Neither helped, discontinued the B12, continuing the D3, for all said reasons. Also tried all suggested minerals & vitamins in a specific regime over many months: none of these ever helped me...

[Floppy99]

My level was on the lower side so I am taking 2000 UI but you can take a lot more. It takes about 6 months to 1 year taking it low level once a day. You can try a lot more and see if you get improvement. I cant prove it but there is some improvement in the mornings. My GP practice said my level was fine yet my consultant said no its too low and 50 is the safe level. Its incredibly cheap to buy and why not try it especially this time of year worth a go.

[Sian10 in reply to Floppy99]

Thanks for reply got blood test Tom and Gp will give then give me some x

[Sian10]

Hi all I discovered my vitamin D was 14.9 so very low been on 8 week course of high vitamin D tabs from doc still don’t feel any better blood test next week to see if they have improved x