Severe tingling, burning + pain in both legs

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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!

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  • Posted

    Hello,

    I have tingling feet too, although by and large it is fine during the day when I am moving around or at least I don't notice it). At night though, I wake up after sleeping a couple of hours because my feet are tingling (not really painful, just irritating) and it keeps me awake. As the night wears on, it seems like I have pressure in the area of my tailbone, again not really pain, just irritation that makes me feel like I have to relieve myself.  In fact, I am sitting awake typing this at 4.19 pm because I can't sleep. Went to bed at 11.00 work at 2.17 and have been awake ever since. Perhaps typing this will help me get back to sleep. 

    During the day I stretch and walk around and maybe that just keeps me from noticing anything. I've never been to a neurologist because I've been told that there is not much they can do.

    Anyhow it's good to read that other people are experiencing things like this tingling.. Sometimes when I am worrying about this condition, I imagine all sorts of pain and serious conditions.

    • Posted

      Hi Sympbios2 - just wondering if you've found anything out? Mine seems similar to your's. I don't get a lot of pain, but sometimes do - usually when I haven't slept. Other than that it's just tingling in feet and legs (and now hands) and sometimes numbness and weakness.  I get lower back pain through my buttocks and sometimes into my legs. 

    • Posted

      I have experienced all of this horrible pain for almost a yr. Been on everything. But 2 months ago i was put on Cymbalta, and it has been life changing. I strongly recommend it.
    • Posted

      Hi jodie39832 - just thought I would say that from what I have learned lower back pain noticed in the buttocks is often caused by Sacroiliac Joint problems. Hope this helps you. Best wishes to everyone.
    • Posted

      Thanks Katie, I'm pretty sure I have arachnoiditis, which has been caused by an Epidural injury. I have lots of symptoms now but I'm still relatively fine. Still working etc. One day at a time. I'm looking at the States for Stem Cell therapy. They have good results with this type of thing and improving nerve conditions. Thanks for your reply.

  • Posted

    I have exhibited almost every symptom mentioned,the shooting pain in feet ankles lower legs. Icompare this pain to what I think having my feet immersed in a bed of burning coals would feel like, The pain in my hands and my scalp are less intense but on a scale of 1-10 would be a 5. It hurts to wear socks are to have the sheets come into contact with my feet. I keep my hair shaved to control the pain in my scalp. my lower back, digestive system, taste eyesight and hearing have all been impacted by my diabetic nueropathy . I have managed to keep my blood sugar at 95-120 by diet and exercise without taking any medication for my diabetes and yet the nueropathy has inexplicably advanced . The numbness , tingling , pain etc. has impacted every phase of my life for 13 years .

     I have been on gabapentin for years and it has made it possible to live with the pain for the last few years . Nine months ago I had back surgery and the pain in my back never lessened. My Pc prescribed a lidocaine patch for my back and lo and behold it not only made my back feel better but it also helped with the pain in my feet and legs !  on the nights when the pain is too intense for me I take my normal dose of gabapentin, apply the lidocaine patch to my lower back, drink a beer ( this is the only time I drink liquor) and within an hour Iwill be feeling much better. This regimen works for me. I only do this when the pain is severe but it works.

  • Posted

    Hello:  Have you tried soaking your feet in a pan of water (as warm as you can take it) with about two tablespoons of epsom salts (magnesium sulphate)?  I have tried it for my tingling and burning calves and it helped tremendously. Could you be magnesium deficient?
    • Posted

      there is also a magnesium spray that works faster and better for me. It bypasses your stomach since it is not a pill...
  • Posted

    i am having the exact same problem!! i can hardly lay down without ice packs..there is no swelling or redness its just numb, burning, aching. i can tell you that i have been to a neurologist and am being tested for MS as this is one of the symptoms..of course i have many other symptoms of MS but the lower leg thing is a killer..i neve r want to stop moving and sit or lay down as the feeling is so bad it wakes me up in the nite every nite and i pack them in ice..restless leg..ha..this is nothing like restless leg..i have that and this is much more severe and very different..good luck moimystique..i feel your pain!!
  • Posted

    I had the same problems and it turned out that my mobility got to the point that

    I thought I'd have paralysis....I needed a walker to move.  It turned out to have nothing to do with difficiency in anything.  I had a meningioma (tumour) on my spine.  It was in the thoracic area and I'd had MRI's but they were lumbar.  I believed an MRI was the entire back but there are 3 types...lumbar (lower) thoracic (middle) cervical (top).

    The tumor caused severe compression of the spine and my health was terrible.

    Good luck!

  • Posted

    First of all, I'm so sorry that you are going through this. Unfortunately, I have the EXACT symptoms, deficiencies and the duration of symptoms that you have. It was surreal to read your post because it could have been me writing it, except I'm in the US..lol! I haven't been diagnosed yet except for the same ridiculous one that you received of, RLS and that it is due to the deficiencies. I can believe that to a certain extent, but why would it come out of the blue and I have struggled with these deficiencies on and off for a few years and I have NEVER had this pain. One day I was even in my car, thankfully as a passenger because my legs were horribly painful and when I went to walk I couldn't. I actually had to lift my legs in order to get out of the car because they felt really heavy and I couldn't control them. I have this horrible pain everyday and it's so bad at night, I dread bedtime and I can't sleep. I'm beyond frustrated! I'm hoping that my appointment with the neurologist helps me. Unfortunately, they can't get me into hear until June!

    Please keep me updated as to how you're are! I will keep you in my thoughts and prayers. Just know that you are not alone.

  • Posted

    Please get an MRI.  It would be good to know age of people as diagnosis helps.

    There's only a few things that impair your walking to the point that your mobility becomes terrible and painful.  As I said, I had a tumor on my thoracic spine.

    The MRI's were of the lumbar - not the right place.  Before being ambulanced to the hospital I couldn't walk 5 ft. The lumbar MRI isn't enough.  You can become 

    paralyzed by tumors.  Yes, the night and sleep are worse.  There are 3 types

    of back MRI - lower mid upper.

    Best of luck

    Good luck.  

     

  • Posted

    Similar symptoms too yours but my feet and toes are tingling and numb my hands and fingers also had blood tests all normal specialist vist next month and getting a steroid injection for writs i was cutting my toe nails the other day and could not feel some of my toes
  • Posted

    Hi All My mom was just in the hospital same issues

    tingling and numbness than pain starting from the feet then worked up to her hands they did a spinal tap no virus just protein 5 days with IV than 8 weeks untill better

    she has GBS (non-diabetic)

    I hope you all get well

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