I have now been unwell for over a year and slowly getting worse. I have yet been diagnosed with fibro, but this is what my doctor thinks I will end up being told that that is what I will be diagnosed with.
I have pain in lots of places and take both Oramorph and MST so that I am not in tears all day long. In the morning I can't get out of bed until after I have taken pain killers and they are working. My back freezes and is very stiff so i cant move and very painful, my hands don't work in that I can not move my fingers. Once I am up, I can hardly walk and it takes a couple of hours before I can really move albeit still in pain. My joints now swell up so much it shows up on photos. I walk like I am a hundred years old ( my kids think I am old but I am 42) I had to give up work due what ever is wrong with me.
I also have high blood pressure and severe asthma,
Some time ago I was found to have a Folic acid deficiency , so was put on tablets, now the blood test I had on Friday I have been told that I no inflammatory markers but do have Vitamin D deficiency and my GP has left a prescription for me
Does anyone have a answer as to why I keep having problems with the level of vitamins I have, I eat a healthy diet. I changed the whole families food when I got ill, we always have fresh home make food. We do not eat processed food. As for vitamin D I love the sun and if the sun is shinning I am out in it. So I really don't understand how or why I would be so low that I need to take tablets for at least the next 3 months
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Carolinee71
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Vitamin D deficiency is not uncommon in the UK, because we don't get a great deal of sunshine, and as it is a fat soluble vitamin, today's fashion for low fat diets may play a part in our deficiencies. Oily fish and fortified spreads are a good natural source, also fortified cereals. Folic acid deficiency can be caused by a number of factors - not all nutritional, for instance, some people find it difficult to absorb folic acid.
A good balanced diet plus a quality multivit. and mineral supplement daily should be enough for most people, but if you have a recognised deficiency, your GP will prescribe appropriately.
It's good that you are correcting your deficiencies, but there's no research to indicate that supplements will cure fibro.
An adequate intake of vitamins is essential to your general health, tho' - so it's wise to ensure that you are having enough.
I hope you get some answers soon, and that your health improves.
I think a lot of fibro suffers have vit d deficiency I know I do also when I was originaly being seen by rheumy I was given folic acid this was stopped when meds were changed as for the way you feel physichly I symposise as im also that way its awful I sometimes am afraid to go to sleep as I know how I will feel when I wake we cant win either way huh,all the best x pauline
Ditto, I am deficient in b12 and folic acid, I am a vegetarian but eat plenty of wholemeal and brown products, marmite, all bran etc. I don't drink or smoke. Some people are unable to digest the b vitamins properly because they lack certain enzymes in their digestion that break down the goodness in vitamins and so they are not absorbed, this is particularly true of B12.
And the amount of vitamins even in a good multi vitamin is not enough to redress the balance. So I now take folic acid on prescription and have B12 injections every 13 weeks or so. It really sucks and like you I eat fresh fruit and veg and don't eat fried or processed food.
It really annoys me that I have all these health issues yet try and eat healthily and yet there are those that binge on junk food and never have any problems. it is so unfair. All you can do is to make the best of a bad situation, imagine how much worse you might feel if you didn't eat healthily!
I have never been tested for vitamin D so I don't know if I am deficient in that. I don't really want to know as I take enough tablets as it is lol.
Hello Caroline. I have only very recently been diagnosed with fibro after a 2 and half years of chronic daily headache and migraine. The pain then progressed through my body over the past 6 months. I have to push and push my doctors unfortunately but i am on the hunt for a new doc. However i insisted him testing my blood for everything including b12 deficiency. I too have come back both folic acid and b12 deficient. My doctor suspects i have something which is called pernicuous aneamia and that is why my body will not absorb b12 or folic acid. He still hasnt put me on the b12 shots and has insisted i take b12 and folic acid supplements for the next 3 months and then he will blood test me again to see if i have absorbed it. Crazy......i have to suffer for 3 months when he could quite easily put me on the shots but unfortunately i am yet to find a sympathetic doctor to my condition. Sometimes i feel they just think im a hypocondriac but thats probably just my paranoid thinking cause of what this illness does to you. I just follow all guidance and instruction from my doc even tho i dont think he's right sometimes but its just time and patience i feel in getting through this. I am in your boat right beside you Caroline. Stay stong hugs xxx
Good luck, you might even find the tablets work and then you won't need the injections and I'll keep my fingers crossed for you. It is difficult to find a good GP as in my opinion they feel so frustrated ashey can't give you a pill to make things better, and patients keep going back again and again saying the last thing didn't work, and also they just don't know enough about it, lots of research shows that. I had been a Master's degree nurse for over 40 years when I first had fibro, and I just didn't even slightly guess what it was. I just kept thinking, I feel this ill, I can't be the first person to have whatever this horrible illness is, there must be research into it and a diagnosis, because it is so horrible there must be a magic pill to cure it, so all I need is a diagnosis. So everytime I had a new symptom -strange reactions to medications, tingling, tinnitus, cramps, dizziness, slightly raised temp, a pain I had never had before, etc., I was zooming back to the doctor thinking when I produced the 'new' symptom it would finally make the doctors realise what was wrong with me - instead it made them think I was a nutter!!! Why I had suddenly become a nutter after 60 years of normality and a very happy life didn't seem to be something they were interested in looking into. There is just not enough publicity, which is why it is a good idea to join a local group in order to publicise the disease.
I've been a vegetarian for more than 20 years. I've always eaten lots of cheese, milk, eggs etc. I always considered that whatever else was wrong, I must be getting plenty of calcium.
Wrong, a couple of years ago my GP, like so many on these boards, at a loss to understand the causes of this 24/7 severe, all over pain, told me that I had a severe Vitamin D deficiency and had developed Ostoe Malacia, the adult version of Rickets.
I've taken 5000iu of Vit D, daily since then, which hasn't done a thing for the pain but now my Vit D levels are normal.
It's my personal theory that Vitamin D deficiency, (along with probably a host of others), is one of the causal factors of this mysterious illness.
Fibromyalgia, polymyalgia, polyalgia, Severe Pain Syndrome; they are all just medical speak for, 'we haven't got a clue'..
hahahaha made me chickle that one comber!!!!! Your quite right they just havent really got a clue. I believe a lot of it is due to the foods in this day and age. The amount of crap thats in even what you think is fresh food is off the scale and i genuinely believe its the progression in our foods over the many many years thats is causing illness' such as fibro and even conditions such as crohns and what not. What calcium supplments can i take? I also take vitamin b2, magnesium and of course my folic acid and b12 supplements. I eat nothing else but fresh food and drink only water and de-caff tea. Stay away from the BIG C's migraine triggers and anything containing nitrites. What a vit d deficiency have come up on my blood tests i had? I requested to have a full blood count etc.
My GP is brilliant. Single GP practice, old school. He never stops burrowing away trying hard, in my opinion, to get to the root cause of what has now, in the space of three years, turned me from a motorcycling marathon runner, into a crouched and twisted shadow of my former self. Unable to walk without sticks and unable to walk at all in the mornings and to cap it all, lost my job.
He told me that he was doing a lot of reading and had just come across the vitamin D deficiency; apparently a, 'Eureka', moment. Unfortunately simply curing the Osteo Malacia, does not restore the status quo ante. The bones stay deformed. Is this another piece of this jigsaw puzzle?
Unlike so many, I don't, for example, get headaches. Reading these boards, there seem to me to be as many discrete types of whole body pain, as the individuals suffering from them.
I find the arrogance of the medical establishment breathtaking, "We can't find it so you haven't got it", "It's all in the mind", garbage. Google, 'Chronic Pain Syndrome', and there is the same old arrogance, "Learned behaviour..", "A means to time off work...", "Attempting to evince the sympathy of family members...", "Compensation claims..."
Would that the, "Authors who have suggested...", these, 'diagnoses', live a day in our bodies! No wonder that the IDS / Daily Mail boneheads, are so quick to label the disabled, 'scroungers'.
As the old saying goes, "What is valuable cannot always be measured and what can be measured is not always valuable"
Equally, as must have been quoted a thousand times,
Hi, thanks for all the comments I guess I will take the tablets and live in hope they at least help a bit.
But in the mean time I have spent today in the garden, in the sun in the hope that I will make some of my own vitamin D what's more if the sun is shinning I will be back out laying in it again tomorrow .
My daughter says instead of tablets the doctor should send us somewhere hot for a couple of weeks. She will have to come as I need her to help me with everyday things. I will just add my GP has been brilliant.
We can live in hope maybe I will get a bit better before my next rheumy appointment on the 25 June. My last appointment with him was last November ,when he ordered urgent scans and phyiso for my hips, hands and back and told my GP to put me on MST and Oramorph . Still haven't heard from phyiso but am taking the morphine. Fingers crossed the sun will shine tomorrow. Well it can't hurt can it.
The sun is the best source of Vitamin D, better than diet and supplements. I wear low factor cream as a lot of the cause of Vitamin D deficiency (apart from lack of sun!) is sun block and high factor sun creams.
Hi, I am very lucky in that although my skin type is white it has added mediterranean factors which means I go very brown ( my mum says I brown under a light bulb) and have got quite a tan just from the last couple of days in the garden.
When I go away I use low factors and tan without getting burnt.
I am going to keep spending time in the garden while the sun shining.
I wonder how long it takes to start making vitamin D from sunlight. Just to be on the safe side I am going to take the tablets the doctor has given me as well. Let hope the sun contiunes to shine and we all get some improvement
. Even if my levels don't raise my daughter will be the first to tell anyone the sun puts me in a good mood, long may it last.
I have been taking Vit D and supplements for years and years and so there is no defiency in these vits, but I still developed Fibro....I would take vitamin supplements all the time...! I take a variety of them....I don't know if that helps and don't know why you have a vitamin deficiency, I would say that it's the food we eat, it's cooked to death, or it's gen manipulated..? I really can't say, some vitamins you have to take together so that they absorb each other, I'm no expert but I would always take supplements. Have a great day
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