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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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  • Brenda_lee
    Brenda_lee moimystique

    Posted

    HI was wondering if you found out what was causing your symptoms because Im having simillar ones too .

    Thankyou

  • Sanvan
    Sanvan moimystique

    Posted

    Hello - l too have sever pain in both legs, starting just above my knees going all the way to my toes.  It is a deep dense ache that is unbearable at times.  Mine started 2 years after back surgery.  They have never found what it is that's causing it. Drives me mad!  I have probably been on every narcotic made!?  

    • Peonygirl1
      Peonygirl1 Sanvan

      Posted

      I think you should ask your Dr to order a nerve conduction test on your legs but maybe most of spinal cord. It can help to find if you have nerves involved. Something to think about. Best of luck.
  • janie93192
    janie93192 moimystique

    Posted

    Hi there I know this is an old post but I'm having his same problem after hiking one day. It's been 5 weeks now and I still have the pain. My calves are also hurting with the tingling pain. I have plantar fasciitis to go along with it. I have no health insurance so I'm just taking hot baths and putting ice packs. Don't know what else to do. Now I can't wear high heels for now! I'm 50 years old so maybe age has a factor in this. My daughter thinks I was wearing old tennis shoes on the hike and now have an injury.

    • Gloriahayley
      Gloriahayley janie93192

      Posted

      With hot baths do 2 cups Epsom salt and baking soda. And I use peppermint oil.
  • dawnmac
    dawnmac moimystique

    Posted

    Hi there, How are you now - I have the same symptoms and lots of tests and no better after 18 months - getting worse gradually.

    Regards Dawn (New Zealand)

  • Agony_lad
    Agony_lad moimystique

    Posted

    Just read your post and wanderd if you could help me 

    I have suffered and still do terribly with so many leg problems

    Lots burning as if someone's pouring acid all over them, electricity running up and down them

    Strong pulse appears randomly from my legs and arms that I never had years ago, twitching

    I loved power walking but it's cost me so many problems, it's got so bad this week I'm literally avoiding any activity as I just don't feel my legs an cope with anything ATM 😢

    • PinoM655
      PinoM655 Agony_lad

      Posted

      Sounds like Neuropathy which I have got. Unfortunately there seems to be no cure.. However you can control it. I take 900mg Gabapentin per day and also watch my diet. I have cut out the following.cows milk, tomatoes, citrus fruit and nuts. Be careful with wine I still have the odd glass, but I know it will cause me a problem. Beer seems to be OK.

      good Luck.

       

  • katie159
    katie159 moimystique

    Posted

    Your symptoms sound similar to hoh mine were. I was prescribed large doses of antihistamines for histamine intolerance which was causing the stinging legs and clonazepam for the same plus irritable legs. I am all but cured now. good luck to you.
    • Gloriahayley
      Gloriahayley katie159

      Posted

      How does clonazapem help? Over the past few years I have been lowering my dose of clonazapem and oddly my leg pain has become so severe. I even got off of clonazapem about 6 months ago. I have a connective tissue disorder called Ehlers Danlos and they suspect mass cell activation (histamine intolerance) which is a comorbidity of EDS, They also think I have POTS syndrome, need further testing to confirm and they are considering periodic paralysis all comorbidities of EDS. I had low iron for several years so sleep doctor thought restless leg syndrome and I got an iron infusion a couple months ago. But leg pain is not improved. They have already tested for vitamin B and D deficiency. So how is clonazapem a solution and should I be on a higher dose. This is very interesting to me to know
    • katie159
      katie159 Gloriahayley

      Posted

      Hi Gloriahayley. I`m afraid I cant answer your questions all I can say is that I have been told that my troubles have been caused by a doctor overdosing me with opioids. Once I found out, I did a lot of research and persuaded  doctors that the opioids were causing histamine problems causing the stinging and burning, that clonazepam would help fight the nerve problems and vitamin E complex would help as a general body toner.  I think that since they could come up with nothing better they prescribed what I asked for and my symptoms are now all but gone along with my trust in doctors, unless it is an emergency case..
    • liz61359
      liz61359 katie159

      Posted

      Be careful Katie, as Clonazepam is as addictive as opoids. It took a whole month to get my body clear of them, even after going down on dosage. When it was out of my system, it was like a fog had been lifted, that I didn't realize was there.

    • martin45332
      martin45332 liz61359

      Posted

      I got on with clonazepam ok but have recently discovered that it has probably been the cause of my sleep apnea. I am again going through the slow business of coming off it-0.125mg every 10 days
    • katie159
      katie159 liz61359

      Posted

      I get off clonazepam by reduction then move to diazepam and then reduce from those. A lengthy operation but gave me no problems if done slowly..
    • katie159
      katie159 liz61359

      Posted

      I still need opioids for back pain, A month is not enough time to clear clonazepam, the fog indicates that, and sleep problems is something you need to endure if it gives overriding benefits.
    • liz61359
      liz61359 katie159

      Posted

      I was on it over 10 years, maybe that's why. It was rough though...

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