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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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  • linda24932
    linda24932 moimystique

    Posted

    I too have excruciating pain in both lower legs which stops me from getting much sleep and will not ease during the day. I have rheumatoid arthritis  dont think I can bear.imy specialist says it is not due to this. I have a bulging disc in my back and suspect this is causing my problem. But the doctors had already told me they couldnt operate due to my breathing difficulties.
    • Dkeith
      Dkeith linda24932

      Posted

      Very sorry to hear. What treatments are they recommending? Have they mentioned any other possibilities?

      My doc did today prior to suggesting surgery which is only option for my back now.

    • linda24932
      linda24932 Dkeith

      Posted

      just got a phone call around 5pm today. I have had hyperparathyroidism for years and have been told they cannot operate due to scar tissue from a previous thyroid op. The call told me that I have now a very high level of calcium in my blood, something they have left for many years causing me to have no quality of life. The pain in my legs is due to the high calcium and they have told me to drink 3000mls of water a day to try to flush it out. I have told them I have no quality of life, unbearable pain in my legs and that I know an operation will be the only cure. They just said someone will call me back on Monday to see how I am. I have lost all faith in them. Hope if you decide on surgery that it solves your problems. best wishes
    • ellen41352
      ellen41352 linda24932

      Posted

      I'm not a big fan of having surgeryI would get another opinion about the calcium

  • marie0509
    marie0509 moimystique

    Posted

    I know this is an old question/forum but I just found it. I'll tell you what worked for me.  Vitamin E.  I started our with one a day for a week, increased to two, then three.  I kept going until the tingling/pain, etc. stopped.  I then decreased and now take one a day. No side effects.

    • rsdsufferer
      rsdsufferer marie0509

      Posted

      Really???? Anything else? I've heard magnesium helps. I would really like to get away from pharmaceuticals.

    • ellen41352
      ellen41352 rsdsufferer

      Posted

      Thanks for the tip I'm taking magnesium I just increased my dose to 800 mg a day. I also started taking a drug called Diluxetine I've only been doing it 2 days. I am getting some relief but it could be coincidental

    • marie0509
      marie0509 rsdsufferer

      Posted

       I read up on  Vitamin E and wanted it to work. You might be deficient in two vitamins. Read up on Vitamin E and magnesium and see what one fits with your symptoms.  Vitamins and minerals may take a while to work. I didn't add the Vitamin E  as slowly as suggested as I wanted results and also felt going too much was better than being plugged up.  If I got the runs from Vitamin E, I would have slowed up but I did not.  All went well.  I hope you find what works for you.

  • helen29666
    helen29666 moimystique

    Posted

    HI

    Have the exact symptoms as yourself, the only thing that worked for me in horse chestnut cream, it really works and its not to expensive either, worth giving it a go its fantastic for relieving restless legs :-)

    • marie16426
      marie16426 helen29666

      Posted

      Hi helen i know this is an old post but i would like to know if horse chestnut still works..is it a rub ...is it very smelly... tnx...
  • MarieAzzi84
    MarieAzzi84 moimystique

    Posted

    I have severe nerve damage due to problems with my spine and I suffer the same pain especially at night when I raise my legs
    • PinoM655
      PinoM655 MarieAzzi84

      Posted

      Sounds similar to me. I am on 900mg a day Gabapentin and I have found it helps a lot. I hurt my back 2 years ago and the problem delevoped from there. I am a fit guy for a 68yr old. Play golf 3 times a week, but these pains are a nusience.
    • MarieAzzi84
      MarieAzzi84 PinoM655

      Posted

      glad it helps for u hun had severe nerve damage due to spinal injury and still battling after 15 years grrr best wishes
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