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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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  • donna15356
    donna15356 moimystique

    Posted

    I had the burning and horrible tingle in my legs about 6 years ago.  I treated the issue with vitamins and minerals. (it gradually went away)  I am now 53 and going through menopause.  The burning and tingle all over is back in full force!  I am now convenienced it is more hormonal than than vitamin deficient.  I don't believe it is neurological.  When I go back to the docter in a few months, I am going to have them check my hormone levels. 

    • donna15356
      donna15356 jane75220

      Posted

      Yeah me either, but I am 80% convenience it is.  I am healthy, active and love the outdoors.  But when I work hard over the weekend, my legs and body go into spasm RL overdrive.  It really started when I started taking progesterone pills over a month ago. 
    • jane75220
      jane75220 donna15356

      Posted

      Hi again.

      ​Since reading your posting I have been doing some research into progesterone and restless legs syndrome but to be frank I am too  tired at the mo to take it in fully.

      Suffice to say that there appears to be a link between progesterone and restless legs syndrome!!

      I can PM the link I think that is allowed .

      xx

      .

    • Peonygirl1
      Peonygirl1 donna15356

      Posted

      Hi Donna, Inwas on that when perimenopause, it was awful. Gained 25 lbs and felt awful. I hope you have better luck. Just remembered my periods were heavy and painful and lasted 3 weeks. Got really sick eventually hysterectomy. Good luck Donna I hope you fair well.💐

  • Snider9727
    Snider9727 moimystique

    Posted

    I just read your posting of 3 yrs ago and it is exactly the condition I am experienceing. Have you been able to shed any more light on the condition.
    • PinoM655
      PinoM655 Snider9727

      Posted

      I have tried everything from physio, to accupuncture. I am on 900mg Gabapentin a day with some success. I have noticed that if I cut my milk intake down again some improvement. Another point is I am trying to lose weight and was eating a couple of bananas and a avacardo a day. My problem flared up. Potassium could be a problem so I have had a blood test. Not had results yet.

      i keep hearing the word idiopathic which means they have not got a clue what is causing the Neuropathy problem.

      i have now accepted I have this problem and have to control it. I have been told by a neurologist it is not life threatening, but a nuisance.

      I am a fit guy and play golf 2/3 a week so worse things can happen.

      i hope my story is of some assistance 

       

    • jane75220
      jane75220 PinoM655

      Posted

      Hi When you mentioned potassium what as the context please. Thanks.
    • PinoM655
      PinoM655 jane75220

      Posted

      If you google people with too much potassium in there body, you will find it causes neuromuscular problems. I am not saying that is the answer, but I had a bad reaction when I ate bananas and Avacardo's.

    • jane75220
      jane75220 PinoM655

      Posted

      Thanks Pino. I have been eating seveal avocados a day and noticed worsening of neuropathic pain it is intolerable. Thanks
    • jane75220
      jane75220 PinoM655

      Posted

      pino

      Pain worsens minutes after eating avocados.

      Driving me mad today don't know what to do.  xx

    • PinoM655
      PinoM655 jane75220

      Posted

      Cut out things with potassium in. Also look at your milk intake I have noticed when I cut out milk it helps. If you need milk try Soya milk. It is trial and error I have been monitoring my food intake for over two years with some success. I am also on 900mg Gabapentin per day.
    • jane75220
      jane75220 PinoM655

      Posted

      thanks pino.

      What is your diet like. Mine is driving me crazy, feel like giving up completely, I am unableto take the usual pain relief .

    • PinoM655
      PinoM655 jane75220

      Posted

      My diet is fairly normal. Plenty of greens and fruit. No bananas Avocados strawberries and pineapple. I eat a lot of blueberries, and raspberries. Cut out junk food, which I found hard as I love crisps and biscuits. I do not drink white wine, but I do drink Red and lager. I prefer beer, but found it a problem.  Lager does not cause me a problem. I do not eat nuts  I also eat more fish than I ever have done, but still occasionally eat red meat. I have cut out cows milk.

      Make a list if you 

      have a bad period what you have eaten that day. If you have a very good day also make a note.

      i feel for you as I have been there and it is a big nuisance. That is the word my neurologist used , not life threatening, but a nuisance.

      Good luck

       

    • jess73631
      jess73631 PinoM655

      Posted

      Pino...have you tried cutting out gluten completely?  See my reply to the OP yesterday.  Have a look at the latest research on the 'neurological manifestations of non-celiac gluten intolerance'.  If gluten is silently affecting your stomach your small intestine will not be able to take in the minerals and nutrients required...hence deficiencies and lots of different symptoms.  I gave up all grains in January, and although it has taken 3/4 months my burning/stinging/numbing pains have receded and other symptoms have also disappeared.  I also have lost weight without trying to even though I am eating lots of curries, stews, roast lamb, chicken etc.  Look into it.  We should not be expected to just 'live' with these terrible afflictions.

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