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

    Wow, your symptoms sound very much like I deal with all the time.  I have nerve damage and walking makes my feet very sore too.  If nerve damage or pinched nerve is involved I think I might ask for a nerve conduction test. It is an unpleasant test but you would have proof of some issues after your surgery.  The words restless leg syndrome was suggested to me also but it was the nerve injury(ies) that were the cause of it all. Good luck and I am sending hugs your way. Having this pain and all the worries is hard to deal and taking care of your sweet baby also. Hang in there girl you are in for a difficult journey! Peonygirl1
    • Posted

      Hi Peonygirl1,

      Did your issues show up on a nerve conduction test? I just had one done today and he said it was normal.

      Thanks,

    • Posted

      Yes they did. Interesting side bar, as test was being conducted I and the Dr. Could hear the differences in the electrical sounds that indicated nerve damage as opposed to healthy nerves! Also, were able to tell where nerve damage was located. I am so pleased yours came out normal!! THAT is great news. Hopefully you will be able to find out your health issues soon. You can do this girl! When I was at the point you are in your journey for health, I reminded myself often of the strengths my mother and Grandmother demonstrated over the years and held tight to my memories. I am sending a hug my thoughts are with you.
  • Posted

    I have been reading these posts and I can recognize some of the problems presented. I have numbness and tingling on both my feet for more than 6 years, went to several doctors I have done all kind of exams blood tests, NMR´s to my column and head, tumor blood markers that came lucky me negative, 2 complete electromyography exams, on my feet, legs and arms and up to very recently no special indication why this was happening. In the past 3 months things got much worst and I started having this feeling coming up both my legs, a bit on some parts of my upper thorax and then to my face and lips. I went again to my neurologist and after another NMR on my column they discovered something very subtle was wrong with one of my vertebras that was causing this new phenomena, with probably pressure on some nerves, but nothing related to my feet, then I have done another electromyography now only to my lower part of my legs and  feet, by a neurologist specialized in this area in a University Hospital and he very quickly discovered that I probably have what they call Morton neuroma, a condition that you can see a lot on the net, that has a lot of the synthons I feel, except pain, because I do not feel any pain, but a lot of discomfort specially at night when I lay down and feel my feet touching the sheets, with this feeling of numbness and tingling that sometimes does not allow me to get to sleep. Next week I am going to do an echography to my feet to see if this is what I have and prepare for a good treatment afterword’s. Hope this has helped you a bit 

    • Posted

      Just read that your being checked for mortons neuroma did you get results yet... i have mortons neuroma about 14yrs...i used to get cortozine injections and would get about 15mths with little or no pain...then 5yrs ago it stopped working ...the foot doc did a guided injection and injected a few places around the metatarsal bar and somehow managed to create a large space between 2 n 3 toe...i would suggest you try this ...hope i have been of some help n you get relief.... put a bar of soap under bedsheet and see if it helps with foot n leg pain...it works...no joke... also vicks vapour rub helps with foot and leg pain....
  • Posted

    I am learning a lot just from reading of of your texts.  My malady sounds exactly like all of your symptoms.  Some time my symptoms are almost unbearable but at other times everything feels cool and normal.  I wonder what gives.  I am just beginning to worry about what to do.  I went to a podiatrists and she told me what shoes to buy which I did and of course it didn't help.  Now she wants me to take lyrica which I am not doing because of what I have heard about the side effects.  What other kind of doctor should I go to. A neurologist? I am on regular medicare. I don't want to pay it out of pocket.  I have had the PAD test negative for any problem.  What other test should I have.  What about vitamin deficiency.  My doctor always tests my thyroid and Vitamin D.   I used to exercise regularly and with weights and at first I thought I was abusing my feet what with all the treadmill fast walking and stairs walking and rope jumping.  But I quit all that and am now into yoga and plan to start swimming to better treat my feet but nothing is helping. Any suggestions.

    • Posted

      One test you could try is a Venus Doppler, for blood flow. Another is a conductivity test.. They use small needles similar to acupuncture and test with an electrical current for nerve conductivity. 

      Medication as an alternative could include gabapentin or pregablin.

      sorry if you have seen these suggestions before as I have not read the entire post. Good luck.

  • Posted

    I have had this problem for over 2 years and have tried everything. Preipherial Neurophathy is a mystery to GP's and all they will do is refer you to a Neuroligest.

    I went on Gabapentin about 6 months ago with some success. Then as a last resort I have had Accupuncture for about 5 weeks. There has been a big improvement and I have made up my mind to continue with this weekly for 12 weeks as i am definatley improving. I take 900mg Gabapentin a day I hope to start gradually reducing them.

    • Posted

      I am taking electrical stimulation in my feet to stimulate my pelvic area for another problem with a gynecologist.  I  wonder if that could be causing it.  I dont remember if I had this foot problem before I started getting the electrical stimulation in my feet.  I'll do some digging on that.

  • Posted

    Sounds like Myalgic Encephalopathy to me. I get this too. I kept a diary hour by hour of the things I used to do, and from that identified that I can only do activities 3hrs at a time. To reduce the pain, you need to rest your legs more, soak your feet in luke warm water, have regular baths. Try sleeping with your legs supported by pillows, this helps to reduce the pain too. I attended an M. E Clinic and learned more about the condition and found keeping the diary and following the above hints, by legs are not so bad. It's about pacing your life and your body. 

    • Posted

      What did it take for you to get diagnosed? Im suffering terribly and in a lot of pain on a daily basis and most of my doctors keep saying I don't know. What tests were run on you to get a diagnosis?

    • Posted

      Hi Judy, my GP did a number of blood tests to rule out everything, which resulted in vitamin deficiencies. One blood test showed there was a problem with nerves and muscles. I was then referred to an ME clinic, who then after a long consultation, confirmed I have ME and CFS. This was all in the UK, scotland. 
    • Posted

      You need to find where your local ME experts are and ask them for help with getting diagnosed. Nic 
    • Posted

      pain management i see i have had eperdurals demenoral steroid shots they help for nerve pain, lyrica helps with the burning only for some ppl not all . stamding do light things even if you have to hold yourself up by a wall try to stand to get the blood cucuralating. if you can walk but only slowly try but dont hurt yourself warm baths even if you need help getting in there warmth helps. wear socks but cut them if you suffer what i do your legs will swell up you dont want anything tight n your legs then tjere is ppl that cant have anything touch there skin there is all kinds of nerve damage all our pain hurts i feel so very bad for all of you and will say a payer

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