Recently I have been having a bit of a struggle to walk, partly due to pain in my knees, ankles and feet, but also the feeling of no strength in my legs to walk.
I saw my consultant on Friday and he thinks that I might be low on vitamin D which he said not only affects the bones, but the muscles too. Most of us will be low on Vit D at this time of the year because of the lack of sunshine throughout the winter months, but he said that the strong drugs used to treat RA might well destroy vitamins in the body.
I know I'm not alone in lacking the strength to walk at times and I wondered if anyone else has been made aware of the problem low Vit D levels have on the body. June xx
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petalnumber2
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My PsA is namely in the feet which means I have problems walking, however last year according to the rheumy nurse my vit d levels 'were in my boots', I was so low! I had a three month very high dose then three months maintenance dose, with the recommendation that I have a vit d blood test done each year. It did help with all the aches and pains. Did they offer a blood test for it, if not ask your gp for one to see if you need a booster. My gp surgery now will prescribe vit d with calcium otherwise I have to purchase over the counter myself. I kept the bottles I was given so that I would know what dosage I would require. Good Luck
Thank you for your reply Georji, I was a bit sceptical about it, but you've put everything into perspective. I had a blood test yesterday, so I'll soon know if my vitamin D is low, and if I'm prescribed some tablets I'll certainly keep the containers to remind me of the dosage too, good idea..
I was diagnosed with very low vit D levels though I hadn't noticed any particular symptoms this was just before RA diagnosis so every thing was painful. I had high dose for 3 weeks and since then have been using a handy spray from holland and barret which delivers 1000% (not a typo) per tiny spray. Easy to use and means I haven't got an extra tablet to take
Thanks Mary, I had no idea Vit D could be delivered in a spray, it certainly would make a change from taking yet another tablet.
I personally think that getting as much sunshine as possible does improve my symptoms. 'Think' is the operative word because it is so hard to judge what's responsible for what!
However, from everything I've read and heard recently about Vitamin D we'd be daft not to maximise our levels. I understand that if you are very low in it then tablets are the best way to get a quick boost, but thereafter I reckon you should grab the bikini & the sun lounger at every opportunity. Sunbathing is, apparently, the most efficient method of getting Vitamin D over time and it's free, of course.
Hey postle it's so much nicer and better to get Vit B from laying on a sunbed and I'd like nothing better, shame I can't tolerate the heat like I used to, I put it down to being well into my sixties. The old thermostat doesn't work so well ha ha. Anyway, it's easy to get topped up and feel better generally when the sun is shining. Yes it's free and gorgeous
Being in sun is good for Britain D Postle but we should remember of course sunbathing may not be. people on RA drugs can have more sensitive sin and burn more easily and of course there always the increased risk of cancer, x sorry for sounding like the health and safety executive lol !!! Xx
You are right of course & I shouldn't have sounded so gung-ho about sunbathing. Thing is I hardly ever meet anyone with RA or PsA but I've met a fair few people who are basically sun-phobic due to fear of skin cancer. And some, including someone in my own family, who have such low vitamin D levels that it has caused fairly serious health problems.
It is definitely important to avoid burning and to check with doctors about possible hyper-sensitivity due to Methotrexate and other drugs we take. Having said that though, my rheumy and my GP just tell me to get out there. It seems to me that doctors are much more inclined to recommend sun these days than they were a few years ago .... ? But yep, of course commonsense is required.
I lived in Spain for 11 years and in 2008 was diagnosed with RA. My Consultant literally prescribed 20 minutes of sunbathing a day, to boost vitamin D levels (any more than that to wear sunscreen) and I'm on Methotrexate. He preferred this to prescribing supplements. That's fine in Spain of course, not so easy in the UK! Incidentally, I've found not only does cold, damp weather affect my RA more but also very hot weather. Summers there were as bad as winters here for my aches and pains.
I think most of us are sensible where the sun is concerned because of the drugs we take, my rheumy doc reminded me that the drugs I'm on are extremely strong, which gave me a bit of a jolt into reality. However, I think when you've been on such drugs for sometime and like me you don't have any problem with obvious side effects it's easy to become complacent.
It's all about finding a happy balance, isn't it, being sensible but enjoying life as much as possible thanks for sharing your thoughts. xxx
We always have to be sensible and take care where the sun is concerned, you're right allanah and it's good to be reminded, but I can't tolerate sitting in it for very long anyway, as I've explained to postle. I hope you are doing OK right now. June xx
SOZ, just had relatives get skin cancer from sunbathing, sorry to bang on!!
Not doing well unfortunately. Start infusions on 23 April but can't walk as heels inflamed, Achilles both swollen etc, so yes probably just being a misery guts! X
Not a misery at all .. sorry you are suffering and know about the ankles . .feels like I am walking on something sharp and can't pick my feet up. Hope your infusions help .. not long to go now. Just started Rituxi last week. Don't want to hijack Petal as her post is also very pertinent to me! Separate comment coming. x
No your not a misery guts allanah, your just being sensible and encouraging us to put the brakes on where the sun is concerned, much as I enjoy it just like everyone else.
You have precisely the same problem as me, toes, heels, ankles and painful Achilles tendons which in my case make the muscles in my calves painful too. My GP has treated me for what he says is Tendonitis a few times. Pain killers ie 30/500 co-codamol and 50mg Diclofenac. Oh, and stretching excercises. How about you, what do you do or take to help it.
I hope your infusions have a good outcome for you. In the meantime take care and be as kind as you can to yourself allanah. June xx
Low Vit D is associated with many autoimmune diseases. There is a website called something like "The Vitamin D Council" which may be worth a look.
If you get Vit D capsules, the D3 ones are more use than the D2 ones.
But if you eat lots of eggs, liver, oily fish, these help.
I am interested in the spray mentioned, better than even more tablets!
Hi, I too am on capsules for vit D deficiency. I thought I was having a flair but it lasted so long that my GP sent me for a vit D test. Nurses, Consultants and GP's are all aware of this as a potential risk for us, why don't they screen for it? Just another drop of blood!
I was tested for Vit D deficiency when I was first diagnosed with RA three years ago, my levels were OK then. I hadn't realised that there is a particular risk of deficiency to RA sufferers, but I'm learning new info all the time !!
Yes the mtx and plaq cause skin sensitivity in the sun. My doc tests blood vit D levels. Rheumy said to keep Vit D levels up as I was low. I live in Calif and was playing tennis in day time and still low vit D levels. Rhumy said I may have a lack of absorbsion so taking capsules.
I was suffering with lower back pain and was diagnosed with low vit D levels. This can cause pain in your bones, which I had no idea about. Was recommended tablets from holland and Barrett as GP thought more effective than what he can prescribe. He did warn me that it could take up to 9 months to get back to par but recommended that stay on them. Back pain now history.
I'm really interested in Vitamin D & what it can do for us. What I'd really like to happen is for some rheumys to investigate its role or at least to put together some kind of info. pack or video for rheumatology patients based on what is known already. Just looking at the replies here I can think of some points that might be covered:
Safe sun exposure / drug related skin sensitivity / factors that affect absorption / effectiveness of sunlight v. supplements / optimum levels / foods that contain Vit D and minimum weekly amounts required .....
I kind of think there's more to it than we think yet it could all be so simple! For example I've heard that even showering straight after exposure to the sun can reduce absorption - might be rubbish, might be highly relevant. I've also heard that other vitamins need to be at good levels to get the most from Vitamin D supplements & that could be important too - it's not difficult to have a lousy diet these days without really realising!
I know a bit about the relationship between vitamins and minerals and how certain vitamins are only made use of in the body if a certain mineral or another vitamin is present. Like calcium is absorbed better if vitamin D is taken at the same time. I find it very interesting too, but I had no idea that vitamin D absorbed from being in the sun can be diminished if you shower straight away. But, that does make sense as it is absorbed through the skin !
I have no doubt that you know as well as me that it can be dangerous to overdose on some vitamins, so it can be a bit of a minefield can't it !
I have not been tested for a couple of years but whilst in hospital a few years ago I had low vitamin D and was given injection. Because I was not very mobile and therefor not getting out in the sun my levels were low.
I wouldn't be at all surprised if it was. I had awful pains in my feet as well as odd pains in my muscles and bones that were different to my normal RA ones. The GP thought I might have fibromyalgia but I was then found to have osteopenia and put on calcium and vit D supplement and all the odd new pains miraculously disappeared! When I investigated online I found that a lot of the symptoms I'd had matched those of vit D deficiency.
Thank you mistymeana, I have had some different pains over the past weeks which have puzzled me, not only in my muscles but in my hips and the bottom of my spine. Like you I have painful feet, in fact most of my problems have been in my feet, ankles and toes particularly. The middle toe on my right foot is always painful and swollen all the time from day one when RA started, and I have often wondered why. What is osteopenia, can you enlighten me ?
Hi petal, osteopenia is reduced bone density but not yet as bad as osteoporosis. I read of cases where people with full osteoporosis improved to the osteopenia stage so I'm crossing my fingers (when I can) that I can improve to a normal bone density. By the way, one of the odd pains I had was pain in the ischium that made me feel as if I was sitting directly on my bones - very uncomfortable. I hope you find things improve as well for you if your GP decides a vitamin D supplement is called for x
Petal, thanks for your very relevant post!! So sorry for heavy legs when walking. I should have chased up a vitamin D script from rheumatology last year and they forgot all about it. Going to GP tomorrow and will mention it but my rheumy registrar wanted to just prescribe last year and I wanted the blood test first. Will try arrange that when I call in tomorrow .. if I can get there. It is soul destroying not to be able to move and I hope you can get sorted and Vit D helps. The spray sounds very techy!!Like that idea. I know if you say something is .. a bit of a struggle . .likely it is really awful. (I used to be the same with my RA and said it was OK .. no prob ... but since two failed anti-TNFs I tell it how it is to the consultants etc.) Please let us know how you go on. Love Julie xx
Thanks Julie, once again I've learned so much from conversation on here, soon there will be no need for rheumy docs because we will all know far more than them, ha ha ha.
I think not really !
A couple of weeks ago I was in real trouble, but rest was the answer to making things a bit better and that's the only thing I have to be firm with myself about. But at least I have a few answers to questions about this awful feeling of no strength in my legs to walk.
I'm waiting for the results of my blood test but I am wondering how long it will take my rheumy doc to look at them and then contact me if my levels are low. Guess I'll wait a couple of weeks and then phone my GP because it's so easy to let the weeks and months slip by without some action being taken, isn't it.
Thinking about you, I know that you've been having a tough time yourself, I hope you've turned a corner in the last week or so, if not, take good care of yourself and I hope you can get on your feet and doing things and getting out and about with you man again soon. Love June xx
I don't know what has been happening with my emails/notifications from the Forum as some were going in my Spam without me realising and it must have been set to delete them after so many days, so I haven't been seeing everything. I was just about to PM you when I found a link to this message from a month ago. Apologies for my tardy reply. I hope you have managed to find out your D levels and can get a prescription soon or hopefully have started on the D? I hope you have both vanquished the flu germs and got over the antibiotics as those things can sometimes cause more problems than the flu etc. I have booked for a Vit D blood test myself next week at the GP's. I think anything we can do to boost our walking and sore and seized muscles is a must. I hope you are feeling much better with your legs? It is annoying and frustrating when parts of you are doing very well indeed on your med but some bits still not as one would want. I am in a decent spell, apart from the flippin Baker cyst behind my right knee which needs to jigger off! Or words to that effect!! With the knees being injected two weeks ago there is enough hydrocortisone flying around to do the rest of me some good and get me moving. Too soon to tell if Rituximab working. Will chase up my results from the blood tests but mid July is three month rheumy review time. I am planing a bit of a bedroom revamp and new curtains, bedding, rugs and some house cleaning whilst I can, and can't believe (well I can knowing how RA grips you) two weeks ago I was unable to get out of bed or make a meal. Just made a rather lovely mild chicken curry tonight and it feels good to be able to do something! I know it can all change so quickly. We've had a lovely day out on Monday for my hubby's birthday with friends ... lunch out then a good old chinwag and pizzas in the evening. Hope you have had a great weekend and will catch up with you and reply to you on PM in a mo! Once again sorry I didn't see this until now. Now I know things are going into Spam I will rectify that. Thought it was odd no Forum links! Yes, we can all share some very valuable experiences here and thank you for talking about the Vitamin D test as it got me thinking ... what if some of that pain I have too is due to a deficiency? My hubby's dermatologist told me a couple of years back I should consider Vit D with my skin being thin in places (backs of hands especially) and the many hydrocortisone shots I have had. Thank you for your kind wishes and I will chat a bit more on PM .. going there now! Love, Julie xxx
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