Severe tingling, burning + pain in both legs
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Hi everyone,
I've been having severe tingling and pain in both my legs (toes, feet, calves and knees) for about seven months now. On running a few tests, I found six months ago that I was deficient in vitamins B12 and D, which was set right. The neurologist said my symptoms were due to the deficiency, however, the condition has steadily worsened in spite of the deficiency being rectified.
Here are the tests I've done:
Vitamin B12 and D: Levels stable for the last 4 months
Thyroid: Normal
Sodium, calcium, potassium: Normal
Iron: Normal
Bloodwork, ANA, dsDNA all normal.
Rheumatoid factor negative.
The pain is worse at night and while lying down. The docs have told me I've got Restless Leg Syndrome. I took Pregabalin for about a month and Ropinirole for ten days but both didn't help with the tingling - in fact the side effects were terrible.
I'm not on any medication as of now and the pain + tingling has worsened, now almost constant, like there's electricity shooting up my legs all the time. I'm unable to do anything physically exerting like climbing stairs. Walking makes my feet hurt terribly (which I believe is not the case in RLS?).
Does anyone have suggestions to confirm the diagnosis? Is there something I'm missing? I'm due for an LS MRI, but the docs have said it is most likely to come clear.
Thanks a ton!
17 likes, 568 replies
Jimjamcolly moimystique
Posted
Hi all ..I has the same symptoms for months ..I was told by my neurologist I had restless leg syndrome. .a simple blood test showed I was vitamin D deficiency. .I took 25000 vitamin 3 for 12 weeks and I'm pain free ..my only problem now it's try ween myself of amtripiline I was 50mg for pain ..I'm. Now taking 20 and hope to bring that down to 10..everyone get your vitamin d checked ..
jess73631 moimystique
Posted
Has anyone tried cutting out gluten? It has recently been discovered that gluten can have neurological manifestations and even people who don't have the stomach problems can be intolerant of gluten. I have suffered with the burning/numbness/freezing legs for over 2 years. Over a year ago I cut my wheat consumption right down...but still now and again had a slice of sourdough toast and was not 'totally' gluten free. However the pains continued....so in January I gut out grains completely and strictly! Its been 4 months now....and the last couple of weeks the pains/burnings have reduced dramatically. I just get the feelings slightly at the end of a long day. If gluten is the problem you must remove it from your diet COMPLETELY....and be prepared to 'wait' quite a while until all the tissues in your body can 'grow out' the gliadin (gluten) and the nerve endings have time to heal. It will not be a 'quick fix'. Gluten could be the reason for deficiencies in B12 Vit D etc. Malabsorbtion.
Emily1234 jess73631
Posted
I started with burning last august it was dreadful I had every blood test under the sun done and nothing. It has got better because I honestly believe gluten especially wheat from cereals is why I have it. I haven't had a gluten intolerence test but I'm going to ask for one, I don't have the tummy problems but the minute I eat gluten the burning and stiffness and weird pains in arms and legs gets worse if I stay off it I barely notice it. It's worse at night to when digestion happens x
Emily1234
Posted
jess73631 Emily1234
Posted
Emily, if you are not having the gastrointestinal problems that celiacs have then you doctor will dismiss the idea that gluten is causing the awful leg pains/numbness/burnings. To have the test for gluten you would have to eat wheat for several weeks, so you would have to suffer whilst doing that....not worth it imo. I am not diagnosed as gluten intolerant...and I would not eat gluten again just to get 'officially' diagnosed. I have gone through the gamut of D3/B12 and other suplements..but have found removing gluten is all I needed to do....nothing else needed at all....just patience.
jane75220 jess73631
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jess73631 jane75220
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I eat a very simple diet..some would say boring....but rather that than be in pain all the time! I eat meat, free range organic chicken and lamb. (I would eat beef if I could be sure it had fed only on grass...but farmers fatten the cows up with grain...and that grain stays in the meat. Sheep will only eat grass so thats the safest option,) I can make a huge lamb curry with chickpeas or potatoes and spinach, and it will keep a few days in the fridge. I have white rice (in the fridge also so that every time I am hungry I have something to reach for) I seem OK on rice.but I dont have mounds of it bcause I bulk up the curry with chick peas or potatoes and eat plenty of the lamb. Or make a large lamb casserole. I make veg soup every couple of days so always have that in fridge also. Because we cant just grab a sandwich or pizza the trick is to 'cook once-eat twice' or 3 times. So roast an organic chicken, or a small butterflied joint of lamb. They may seem expensive...but if they feed you for 3 days its no more expensive than buying loads of cheaper stuff. Fish if fine but not in breadcrumbs. Don't bother with 'bread' or bread substitutes..fill up with meat, eggs, fish, veg and salads. eat a few walnuts/brasil nuts every day. Bake a couple of sweet potatoes..they can be kept in fridge and are ok cold...quick to grab. Get some hummus and some sourcream with chives..you can dip carrot and cucumber sticks in those for a snack..tasty too. Toss any veg in lots of best butter (no 'spreads' must be block butter) Have some fruit..berries, pears, apples, apricots but not too much because of sugar content.A banana is filling. I still have some chocolate, and cocoa (NOT 'drinking chocolate...real cocoa) but if you are dairy intolerant you may not be able to have that..although it might be ok with water.
Becuse I cant eat the usual 'fillers'...bread, pasta, pizza, biscuits, cakes etc I am eating more meat than I used to....but it keeps me fuller for longer, and it has reduced any cravings for the wheat stuff. I don't bother trying to find 'non gluten' biscuits/bread etc. There isn't any substitutes that taste the same anyway....those things just make the manufacturers rich and they are as unhealthy as the wheat stuff anyway.
Speak to your doctor and try to get gluten free meds. I realised that even the odd slice of toast would throw me back and cause flare ups for weeks. so even though I am not 'diagnosed' I know that gluten is my problem and I can't have ANY!
So many symptoms have improved for me..not just the neuropathy pains and numbness! Brain fog gone, blurred vision gone, very itchy rash around ankles gone, sleepng better, feel calmer. Oh and lost weight even though not trying to!
I don't know your circumstances Jane, and if you have a family then it must be very difficult to manage being gluten free. My children are all married and I live alone, so only have myself to please foodwise.
jane75220 jess73631
Posted
I agree with your diet if usee what I mean.
I hate that gf stuff it makes me feel sick , had just one slice of gf bread and felt iill for two days not to mention increased burning. Taking B and D3 B12 injections for neuro pains .Will write again as tired but just wanted to thank you.
Jane xxx
Emily1234 jess73631
Posted
Thanks jess I had a muscle test food thing by a holistic person she said I was fine with gluten but very sensitive to wheat oats and rice! I found that interesting my diet is so like yours and I'm keeping it up I swear by it good look if you find any more cures send them my way!!!😄
jane75220 Emily1234
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jess73631 Emily1234
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Emily, I dont understand how your holistic practitioner could say that you are 'very sensitive to wheat'....but 'fine with gluten'?? That does not make sense really. I have really cut out all grains except rice. Wheat, barley, rye, all have gluten, but even other grains such as oats, buckwheat etc have their own versions of 'gluten' which can also cause reactions. Grains don't want to be 'eaten' they want to grow into grasses! I didn't want to give up my bread and pasta....but I had struggled with health issues and tried all sorts of supplements and alternative therapies (wasting time and money). I gave up the wheat as an experiment and have been suprised that after 3/4 months my neuropathies are receeding. I don't know if that will continue...it's still an experiment in progress lol! Let's all go back to the 1950's diet (when I was a child!). We had never even heard of 'pasta' or pizza then! It was 'meat and two veg' as I recall.
linda31748 moimystique
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Moimystique. I'm hoping you found out and made progress sense or at least they diagnose you because honestly I would like to find out myself.. I'm having the exact problems with no results.. I did find out that it's a possibility that it is due from back problems. I get relief using a heating pad.. I actually purchased another one so I could have one on each leg and it has helped tremendously.. obviously I can't stay in bed so I was curious if you ever found out what the problem is and if you have any solutions? I would really appreciate any of your help. Thank you Miss Linda
martin45332 moimystique
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PinoM655 martin45332
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martin45332 PinoM655
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I do have it as well as Restless Leg Syndrome. It affects me worse in the evenings and often I can't sit down. My meds have not been changed from those I am on for RLS apart from Gabapentin now up to 2700mg! I am seeing my doc on Wednesday to get a referral to a pain clinic (hopefully)
jane75220 martin45332
Posted
Have you tried magnesium either orally or via a spray? Have to be careful if you have kidney disease but this is checkable with your dr. Another cause of neuropathy is Vit B12 deficiency, however if you have been taking vitB12 supplements then your blood results will be skewed. Values are much higher here so you may be told that they are fine or 'normal' when in fact they are low and need treating.
Vitamin D deficiency. It is a good idea toget this checked as well and also food intolerabnces. The dr can make a referral to the Immunology clinic for testing under the NHS. Take care xx
Gloriahayley jane75220
Posted