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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

    nerve tests need to be done i have what you got in both legs feet and toes hands fingers only nerve test will so whats the problems are had my right hand and now i had CTS in my right writs i take high dose of gabapentin with tramadol 
    • PinoM655
      PinoM655 marshall71

      Posted

      Are you happy with the results and what about the side effects
    • Malachite
      Malachite marshall71

      Posted

      I was wondering the same thing.  Gabapentin isn't also called, Neurontin which I use to take high dosages my Dr. prescribed me.  I did not like the side effects at all.  I was lightheaded and affected my vision, and just felt like a zombie. Also, had to take other medications,  it caused stomach problems. I hope it helps you.  Everyone's body and condition is different. Really had a bad weekend.  I, again want to Thank You all for your blogs and sharing your conditions.  
    • marshall71
      marshall71 PinoM655

      Posted

      not happy with the side effects make me feel spaced out and high as for the nerve tests going to have op on CTS still waiting for other nerve tests on legs 
    • marshall71
      marshall71 Malachite

      Posted

      on max dose which is 9 a day i feel awful and spaced out but its helping with the nerve pain before it was full on all day till i took other meds too sleep yes had stomach pains zombie effect also constipation the hads are effected too had injections in both but may now need a op 
    • PinoM655
      PinoM655 marshall71

      Posted

      I am interested in these nerve tests as no one has suggested this to me. When you have them done please let me know what it entails
  • matt66
    matt66 moimystique

    Posted

    I have had a lumbar sympathectomy to try to stop my pain but it only worked for a couple of months. I'm now scheduled for the next level up where they do the same with needles in the spine but they heat the nerves to try and singe them too to block the nerve pain receptors. When I have it I'll let you know the outcome.

     

    • kathy_06990
      kathy_06990 matt66

      Posted

      Matt66

      Please let me know how that works for you. Sounds kinda scary when they are burning the nerves. Does that mean you will be basically numb in that area? Ley me know. Greatly appreciated. .Kathy

    • Malachite
      Malachite matt66

      Posted

      Hello matt66, I knew someone that had some of their nerves burned that helped tremendously from them. Hope it helps you too.  confused
  • Oboegirl
    Oboegirl moimystique

    Posted

    All testing came back negative. Diet change,acupuncture and rest seems to be my only options at this time.  However,  several of my friends told me to look up the side effects of aspertame, the sugar substitute in diet soft drinks, my coffee, and other things.  I was astounded to learn that there is so much overlap in its side effects and many of the symptoms we are talking about.  I encourage all to go to these websites, make some diet changes (over at least a month) and see if you feel better.  Its an easy fix if it is your culprit.  Best, Kathy
    • kathy_06990
      kathy_06990 Oboegirl

      Posted

      Oboegirl

      I have all the test myself. One thing they had me start taking is magnesium. Apparently my levels for that were low. I was not deficient except for that. I do have hypothyroidism so I take medication for that. I hear ya about alot of walking around. Every time I do that when I lay down at night I pay dearly. Have your dr check your magnesium level. I have noticed that the pain had lessened a little since I've started taking that. Good luck. ..Kathy

    • PinoM655
      PinoM655 Oboegirl

      Posted

      When you say diet changes. Is there anything in particular you are eating I am also interested what you have cut out. Great post
    • marshall71
      marshall71 kathy_06990

      Posted

      i take magnesium have since 2005 had all the blood test all clear

       

  • joey38532
    joey38532 moimystique

    Posted

    Hello, I'm new here.

    I'm 18 years old and I have also been experiencing pain, aching, burning, etc. In both of my legs. I have unofficially diagnosed Flatback Syndrome, Fibromyalgia, and Rheumatoid Arthritis as well as inflammatory issues.

    I was wondering what people thought about my symptoms.

    Throughout the day I get cramps in my legs and pains that shoots from my inner thigh, the back of my leg, calf, and the bottom of my foot. This is much more noticeable on my right side and sometimes only present in my right side. The worst pain is in my right calf. I occasionally get burning sensations and what feels like an actual heating up of the skin on my thighs, hands, and feet. I will occasionally experience numbness, tingling, trembling, and heaviness. This also sometimes affects my arms, though usually after being in an odd position or carrying something. The symptoms in my legs are notably worse at night.

    I have a horrible fear of developing a DVT or that I may already have one. So far I have not experienced the redness or swelling that usually accompanies a bad one.

    Reading everyone's experiences on here thus far has put my mind slightly at ease in knowing at least i am not alone. My possible conditions may be the cause of the feelings for me and may be the reason behind some of your, I would love to discuss things further with people sharing this experience.

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