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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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  • dorothy38356
    dorothy38356 moimystique

    Posted

    wanting to know if you found out anything my mom is going through the same thing the vain specialist has told her she has poor circulation, but must try wearing surport shocking for 3 months before insurance would pay for a surgery if that is all that is wrong.  She is in severe pain 24/7 and has fluid built up, high blood pressure, and she only has 1 kidney.  I am very concern wanting to know if anyone knows what doctor does she need to go and she, because 3 months is along time away and she needs relief now.
    • PinoM655
      PinoM655 dorothy38356

      Posted

      No I have had circulation tests and that is not causing the problem. I am taking Gabepentin with some success
  • Liellie
    Liellie moimystique

    Posted

    Hi there I don't know if you will still read this answer but I will say it nevertheless. I have been suffering from severe pain in my legs, feet, arms and fingers for 20 years. Shooting, burning on fire pains and a feeling of weakness in these limbs. Started after I had a viral infection when 15 yrs old. I had the Dopler tests and all other kinds of tests. Was diagnosed with a form of peripheral neuropathy. But before coming to that, doctors who did not want to admit they have no clue said fibromyalgia or the best one, that it is all in my head. It hurts day and night. Mine is always worse at night. I don't think because it really is, it is just when one is busy during the day, you don't dwell on it. I go through flare ups when the pain is way more intense. It never goes away. It is always there peaking over your shoulder. Tried all the meds suggested here. None works. I feel they just end up poisoning your body. After 20 years, I have accepted my lot and use nothing. Even wearing shoes sucks but what can one do. I was active as a child now I force myself to walk or exercise which results in the pain magnifying. We have to exercise. I sometimes apply topical analgesics at night just to take the edge off and make me fall asleep. Unfortunately I wake up at night again from the pain. I have made it 20 years now. Guess I can make it another 20. I pray to God that he will give me a miracle and heal me or after all these years that my body will heal itself. I try to live very healthily. It is debilitating but I force myself to work, in spite of the severe pain. Even my fingers are hurting badly as I type but I will not let this win and take over my life. I use to cry, sometimes I still do from the pain but I am a survivor. I will live my life to the best of my ability. Even though I have no answer, I want to tell you if after a long time you don't have an answer. Stop focusing on it and live your life. Because the relentless pain causes depression. I have been there. Don't let it take you there and I apologise to those who do not believe but God has carried me through and with him I can face this. This is the thorn in my side and it will not destroy me. Good luck and in your case I hope there will be a solution.
  • rahul67123
    rahul67123 moimystique

    Posted

    Hi Moimystique,

    I am also facing the same symtomps for last two and a half years.Any Luck,If Your problem(root cause) got diagnosed?.Let me know,i am eagarly waiting for your reply.Hope you are understanding my situation,,,,, stressed!!!!

    Thanks ......

    • PinoM655
      PinoM655 rahul67123

      Posted

      The problem is Perphial Neuropathy. I would not accept the diagnosis and tried everything from Physio, to alternative medicine. I finally accepted the neurologist opinion and started taking Gapapentin. Which does not heal the pain, but blocks it. I have found taking 600mg a day helps by 80% without side effects. Taking more I get side effects, but the pain decreases more. It is a balancing act whatever suits you.

      Go back to your GP and talk it through

  • dianne0744
    dianne0744 moimystique

    Posted

    Have they checked you for diabetes? My sister has the same thing in her legs and feet and she has diabetic nerotherpey.( can't spell it right) Have your doctor check you out for that.
    • PinoM655
      PinoM655 dianne0744

      Posted

      Yes that was one of the first test I had. They keep using the word idiopathic which loosely means haven't a clue. It looks like I am going to have to live with it. Gabapentin is controlling the problem to a degree. I have noticed it gets worse if I have alcohol especially wine.
  • Dkeith
    Dkeith moimystique

    Posted

    Been dealing with severe pain, numbness, and tingling from both knees down to my feet. Pain gets so severe that I feel dizzy and like I'm going to pass out. So frustrated with doctors not knowing what to do. Recent Urgent Ortho clinic says it's bone on bone disc in lower spine and put me on Meththylprednisolone. Said I should notice major relief and nothing! Put me on Gabapentin but not helping much if at all. Trying to get xray of my knees tomorrow since my Mom had similar knee issues at my age and found she was bone on bone in both knees. Chronic pain is so bad that I sincerely asked God to take my life away if it was His will. Not suicidal because I have family that would be devastated. Finding this post at least lets me know I'm not alone. Impossible to explain to someone who doesn't suffer but sounds like I've found a forum where people can understand the overwhelming suffering, frustration, and depression.

    • PinoM655
      PinoM655 Dkeith

      Posted

      I am on Gabapentin with some relief. I am informed I have Pherifial Neuropathy. Which is damaged nerve endings. This started nearly two years ago just after I hurry back. However the medics re not connecting it. I am at a loss to know what to do next. Considering a full MRI scan, but expensive.

      Good luck 

    • Dkeith
      Dkeith rsdsufferer

      Posted

      Thanks. My pain tolerance has gotten extremely high but this has been unbearable! I've always stayed away from narcotic pain meds unless unbearable. Got xray of both knees today and the knee doctor said they would not be the cause. He feels it's my lower back disc (s) issue. MRI scheduled tomorrow and appointment with back specialist later this week. Been dealing with chronic pain for years. Multiple procedures but only temporary relief at best. More difficult mentally after years of suffering. Praying for everyone suffering from chronic pain issues to find relief! Never give up!

    • Dkeith
      Dkeith

      Posted

      Back Doctor showed me my MRI today. Severe degeneration and stenosis (bone on bone) in low back confirmed again. He recommended that I explore other possibilities such as Neoropothy or other possible causes for the extreme pain, numbness, and tingling from both knees down through feet before proceeding with surgery. Since I've not responded to other non evasive procedures like injections and RFA procedures, surgery is my final option. I want to rule out every possibility but the pain can get unbearable to the point that waiting to explore other possibilities is hard. Anyone else dealt with similar issues with low back but no noticeable pain/numb/tingling in upper legs but extreme in BOTH lower legs from knees to feet?

      Praying we all kind find some answers and relief!

    • MarieAzzi84
      MarieAzzi84 Dkeith

      Posted

      I have same pain and burning in feet mines due to severe damage to the nerve endings in my spine anymore questions u want to ask me feel free
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