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Severe tingling, burning + pain in both legs

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moimystique
moimystique

​​

H​i 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

568 Replies

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  • marshall71
    marshall71 moimystique

    Posted

    well the update is  no neve test spoke too a doctor today on the phone they have just said to go to a pain clinic the symptoms are liklely too be an entrapment neuropathy with functional overlay with chronic back pain DDD no treatment at all iam so upset and down that iam left with this chronic pain to live with just taking meds 
    • kenny_02267
      kenny_02267 marshall71

      Posted

      For the first time in my 60 years, for a month now I have been experiencing very similar symptoms. My feet and hands have been tingling, burning, aching, and twitching to the point of misery, especially when I am up on my feet for a while. Very miserable at night also. I have read several forums about the exact symptoms and it sounds like Neurapathy. The horrible thing I keep reading is that most people have been going through this misery for years. Since it has only been a short time for me, I am still trying to decide what to do as far as a health professional.
    • marshall71
      marshall71 kenny_02267

      Posted

      Hi,

      Took me a year too find out what it was been on amitriptyline tramadol codeine now on high dose of Gabapentin 9 a day plus 4 tramadol the pain clinic gave me a cream which has made a difference too the PN it's called capsaicin used 3 times a day on feet and the effect is good still getting tingling in hands and fingers had a steroid injection in both hands won't have the Carpel tunnel operation read too may horror stories on the net about it.

      Night times are the the worse with hands and feet toes it's going up my legs now it's a horrible thing too suffer from with no real cure at all if nerves are damaged.

      Wish you well push for all the right test and treatment as its a life long condition have blood tests too rule out other things

    • kenny_02267
      kenny_02267 marshall71

      Posted

      Thank you so much for the reply. I know my neck and head are visibly offset when I look in the mirror. I had a terrible crick a few months ago that left me with a crooked neck. I wore cowboy boots last Saturday for a couple hours and I felt like someone took a torch to my feet. Everyone says to see a Chiropractor, but I'm not sure about that. I've always been a physical fitness person, but have found that physical activity seems to really set it off.
    • marshall71
      marshall71 kenny_02267

      Posted

      I would go and see one get a assessment done I have problems with neck and lower back seen my MRI scan and my lower disk is flat was working a very active job and did sport when I was younger I had physio before and it help but this time my back is worse as I'm getting older the drugs amitriptyline made me put on a lot of weight and it's been hard trying to get it off walking is a problem long distance i can no longer do
    • kenny_02267
      kenny_02267 marshall71

      Posted

      I totally understand. When the burning and pain really hits you, it gives you a felling of doom and gloom, and it's impossible to describe it to someone who's never experienced anything like this. I was shocked to see all the input on these forums that describes my exact pains. I also am doing the Capsaicin creme. It does seem to help. I also am taking some St. Johns Wort liquid that someone described as helping their pain. Thanks again for the input, much appreciated.
    • marshall71
      marshall71 kenny_02267

      Posted

      Your welcome it's a anxious not knowing what's going on I was scared with the tingling and numbness when it first started so many serious illness it could be yes telling someone lighting shocks in feet and wearing like gloves on your feet
  • amy2517
    amy2517 moimystique

    Posted

    I have experienced something sound like you have described. I have pins and needles , pain and burning. i used to take lyrica and norphripthyline but it didnt help me. I having pin and neeedles and pain in my legs for almost 3 years. In year 2012-2013 I can not walk because I got a lot of pain , pins and neeedles and burning in my legs. I cried every day as to dont know what wrong with me. I changed 4-5 hospitals but no one can give me the answer and can not help me. After a lot of test with a neurologist doctor he told me that i didnt have neuropathy.He suggested me to see psychiatrist 2 years ago. The 

    psychiatrist orders deanxit, valdoxan and amitripthyline to me. It helps me control the pins and needles, pain and buring for 95%. I can walk and and came back to work but the doctor told me that I have to take these medicine for my whole life. She told know what i'm suffering but can only control all of the symtoms.

    I dont know that now you find to way to heal your symtoms or not. If you find the way please share.

    Good Luck.

     

  • sheetha20286
    sheetha20286 moimystique

    Posted

    I am suffering from tingling and burning sensation on my arm and legs it's a terrible feeling who must I consult?
  • PinoM655
    PinoM655 moimystique

    Posted

    I have had this problem for over a year and there does not seem to be any cure. It seeme to be fibre nerve ending damage.Antidepressants may help if you can stand the side effects. I couldn't. Go and see your GP and he will probably refer you to a Nueroligest. But he will put you on Antidepressants. 

    I have changed my diet with some success, but not a cure. Eat more berries, they are a Antioxident. Also Brazil nuts. I like a glass of wine, but I have noticed it aggravates the problem. Have you you had a recent injury, my problem coincided with a back injury. The back injury is long since healed, but the nerve ending problem is with me and I am coming to terms with the fact I am stuck with it.

     

  • wendy89846
    wendy89846 moimystique

    Posted

    Hi everyone,

    I've been following this thread for a little while and after this week I thought I would share my story.

    Two and a half years ago I was in a car accident, I was driving. After the accident I had a few pains, lower back and neck but the worse pain was in my heels, both were bruised but X Rays show nothing - after a couple of weeks the pain persisted, I was getting cramps in my toes and shooting pain in the soles of my feet. I went to Physio where they said that due to being hyper mobile I had stretched all the nerves and tendons in my feet. I have since been to a orthopaedic surgeon, two pain specialists and a Hypermobility specialist who are at a loss as to what is wrong (they have ruled out CRPS) at first they were thinking that perhaps it was psychological but my feet swell up and change colour. I've looked at the symtoms of CRPS and I have a lot but it's been two and half years now and even though I get a lot of symptoms they aren't present all the time. I have also been to a psychologist who doesn't believe the pain is psychologically.

    I have taken a number of pain killers Lyrica, tramadol, nortryplene but they do little to help. I've also had an MRI which was clear, so far I have been told that I have idiopathic chronic pain

    I was just wondering if anyone had any advice or ideas as to what to look for in regards to getting a diagnosis. I feel like I'm running out of options.

    Thanks for reading

    • PinoM655
      PinoM655 wendy89846

      Posted

      Hi Wendy

      Your symptoms are slightly different to mine as I get burning and stinging pains. However I was diagnosed idiopathic which is annoying as if you do not know what is causing the problem how do you solve it.

      I have done two things recently

      1) soak my feet in Epsom salts

      2) I am eating more berries, and nuts

      Also out of interest do you or have you taken statins. I have and I think it could staton damage.

      I have started taking COQ 10 tablets

      I have had some improvement

      Good luck

    • Tumtum1963
      Tumtum1963 PinoM655

      Posted

      I have had all this to contend with for over two years in hands, feet and legs bad more recently my mouth. Mine is idiopathic too but I have RA or a connective tissue disease a d am hypothyroid. I had a lumbar puncture early this year and they found paired oligloclonal bands which show some systemic process is occurring but this is quite vague - could be Vasculitis, Lupus or Sjogrens.. I've been on four powerful immunesuppressant drugs over five years - it could be these too but I don't think so. I'm recently off steroids too so only taking a BP pill - have a few other odd signs that something is not right but nothing conclusive enough for additional diagnosis and no sign of RA symptoms anymore. The GP suggests I have counselling and attend pain clinic and says it will always be with me and I have to come to terms with the fact that I may never know what's causing the burning and tingling. On a better day I can take this somewhat but on a lousy day or night it does depress me and can be very painful - especially if I'm still for a while after exertion. I hate it when they try and suggest it's all due to anxiety as a new GP did recently. If I knew it was a recognised symptom of a connective tissue disease it would be easier to bear somehow. 
  • donna_49489
    donna_49489 moimystique

    Posted

    Has your Dr diagnosed you with Erythromalgia?
    • donna_49489
      donna_49489

      Posted

      I have exact symptoms..very severe. I've had them for around 7 years and was diagnosed about 5 years ago..most Drs don't know about it..as it is a NORD..very rare.
    • PinoM655
      PinoM655 donna_49489

      Posted

      Donna. Thanks for your comment. I have just read up on Erythromalgia and must admit the symptoms are extremely familiar apart from the redness on the skin. I do not have any redness whatsoever, so can you have this disorder without the redness? I have today upped the dosage on Gabapentin, but do not feel confident about it. My problem is mainly when I am in rest mode. I play golf three times a week with little problems.
    • donna_49489
      donna_49489 PinoM655

      Posted

      No..redness is a hallmark symptom..are you diabetic?..I know someone w/very similiar symptoms except redness..who's diabetic. It certainly sounds like peripheral neuropathy. .
    • PinoM655
      PinoM655 donna_49489

      Posted

      No I am not diabetic and yes I have been diagnosed with peripheral neuropathy. I refused to accept it as it occurred just after I hurt by back and I thought it was to coincidental not to be a physical problem. I have now accepted it is PN.
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