Severe tingling, burning + pain in both legs

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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

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  • Posted

    Hi

    I am not sure if you have recieved your answer from your Dr yet.Do you also have numbness?

    Have your Dr do an MRI of your Brain, Neck and Spine, looking for lesions, also request a Spinal tap too check for banding. if you come back with lesions and banding, seek out a MS specialest and do not use a normal Neurologist.

    Best of luck.

  • Posted

    hi,

      Tony,  

                  i had the same burning and tingling sensation for a long time , I would come and go on and off..  Sometimes numbness in my legs. , Please check your sugar first . My dad was diabetic and complainng teh same always . Even i have it now. So when i check my sugar on 10 hours fasting it showed 118 which is 18 more than normal. After taking metformin the burningsensation is gone, Please check your sugar and reply to me please.. Hope this will help  i am sure..God bless.

    • Posted

      Hi Simon,

      I've noticed that the tingling sensation I have is worse at night, especially if I eat late or have a sweet snack before bed time.

      For the last couple of months the Neurologist has had me on 500 mg of Gabapentin and 0.250 mg of Mirapex. This has supressed the tingling and allows me to sleep at night. However, often I also have to take Lunesta to help me go to sleep and sleep all night.

      Since I've read your posting I'm wondering if I too could be diabetic...

      When you fast before testing your sugar level, do you not eat or drink at all for 10 hours?

      Also is metformin specificly for diabetics?

    • Posted

      I'm not Simon but I can answer a couple questions and shed a little light.  For what's going on w/ me which explains why I know anything about this, please see my response to moimystique.

      Fasting for a blood sugar test means nothing but water for 10hrs before the test. You can get away w/ 8hrs but they really prefer 10-12 to be sure.  If you're getting an A1C test, you don't need to fast. Metformin IS specifically or treating DBM II (Diabetes Type 2).  I take a high dosage of metformin (2500mg), glipizide (also for DBM II), neurontin (2400mg for the neuropathy), and cymbalta (90mg for the neuropathy) every day (plus about 9 other meds)... the neuropathy is caused by ??  there is no way to know for sure!  Could be one of my other meds, could be the fact that I was a heavy smoker  for >30yrs. Could be hereditary. Could be that I'm a diabetic. Could also be that I have severe apnea and will soon be sleeping w/ my very own Darth Vader mask w/ O2 added!!!  Which means I might actually sleep again, which also means that many or at least some, of my ailments could go away, eventually!

  • Posted

    I have a herniated disc that I thought was the source of my butt/leg pain/sciatica like symptoms, turns out it was mostly from sacroiliac joint dysfunction. I knew it when I got relief after getting shots there (instead of no relief when lower back shots)

    The pain came back unfortunately, and 2nd set of shots didn't last. The Dr says surgery there has a low success rate, so not sure what's next.

    Worth looking into though, if your Dr hasn't thought of it.

  • Posted

    Hi

    iI have had tingling in my feet since 2008, and then started with numbness in my right thigh. In March 2014 I started with burning in both feet which now server pain. MRI scans and CT scans have confirmed I have an impinged nerve due to have a flat disc in my L5/S1 disc plus a buldging disc in the next disc up. I would get them to check for this as I have not got any vitamin diviceincy and I am not diabetic. I am due to go for surgery within the next 3 month. I can honestly tell you that the pain is so bad I am on lyrica (pregablin) highest dose you can take and I am now taking endone. I can hardly walk by the end of the day due to my feet being so painful. I hope that you can find out what is wrong with you as I fully understand how you feel 

  • Posted

    I am so sorry for the pain that you are having. Can you tell us a little more of your history?  Have you ever been in an accident? Hurt your back? Or had a spinal cord procedure like a back surgery or get an epidural steroid injection or epidural pain block while giving birth?

    The reason why I am asking is the symptoms that you are having sound exactly what I have and I went to all kinds of doctors for years who also diagnosed me with restless legs. I finally found out what was wrong with me and how it happened. I had a spinal cord disease called adhesive arachnoiditis and I got it after getting a spinal procedure. If you have ever had back surgery or gotten an injection in your spine that could have been the cause of your symptoms, There is a really good UK support group that can answer more of your questions here is the link:http://arachnoiditis.co.uk/  I hope you get some answers

  • Posted

    Oh no, reading this tread gives me a lot of recognition! No pain yetbut a hot feeling and tingling, and somemild electrical current feeling. It seems to be getting more spread out and worsens with stress or after stenuous sport.

    The only blood results that werenit good was D3 (treatedmonths ago), macrocytoc red blood cells, B12 low but not too bad (300 or 350 depending on units, treated with weekly injections). TSH is either 1.x or in the high 4.x and there has been an antibody count of 350 on that one test for hashimotos, not the one for graves. Doctor things that's all not problematic. And more than a half year ago, when this all started I had a high longterm blood sugar. The last test was ok, though I've lost 17kg since then and my bmi is 20.x now.

    I had no tests whatsoever apart from blood works and reflex/feeling tests. The latter is always ok. I thing I will go to the ER tomorrow and ask for more tests - next regular appointment is in 3 weeks and I get a different doctor each time and nothing gets done. What kind of tests should I be demanding? Proper thyroid? Sugar challenge? see a neurologist with what? Spine xray? lymes (lots of disease carrying ticks where I used to live).

  • Posted

    I have had right knee arthroscopy twice over the years, then pain started in left  knee. Had an injected for pain as well.  Nothing worked, kept having pain, couldn't stand,walk for long.  Been going on for last few years with me kept going back to doctors.  Was referred to Neurologist last year wo has done many testa, Mri,ct scan etc.  Seems to think it's nerve damage problem,  My pain in knees has got much worse so was sent to Physiotherapy who suggests knee replacement.

    in the meantime pain in feet, legs arms etc has also appeared and started getting worse all the time, along with tingling, burning, pinching in feet,legs.  Luca, Gabapentin has not helped. Now I have stopped all melds as they were not helping. Doctor has gone on holiday, had to see different doctor who didn't seem to understand situation.  I feel very uncomfortable all the time, stopped doing exercise, yoga as pain, tingling and not being able to stand,walk etc for long.

    i am iron anaemic I am told after I suggested to check, so taking supplement.

    it seems doctors don't have an answer.

    • Posted

      I get injections for B12 because I apparently cant store it naturally in my body. The syptoms you describe do occurr when B12 is low so your anaemia could be the problem. If that is corrected then hopefully your symptoms will subside. I hope it works for you.
  • Posted

    I'm so sorry I didn't see this sooner; I do hope you're still around. I would really like to hear an update from you, since it has been over a year since your original post.

    The first thing that came to my mind is the torture and suffering I'm currently going through, as well, known as NEUROPATHY.  Often linked only to long-time, heavy smokers and diabetics - there are other causes. Unfortunately, there are very few treatments and no known 'cure'. If it is neuropathy, you're not doomed but you'll have to be your own hero and an extremely pro-active patient.  UNLESS.... and this is why I am HERE - in a forum for patients in the UK -  Unless Europe has found more answers or approved more treatments than the USA has.  If so - I'm dying to find out everything I possibly can.  

    My legs and feet are SO affected, I can't wear shoes or socks, my legs & feet can't touch each other at night (I wrap them in plush baby blankets), they wake me up - or keep me awake, and often times they ache, burn, & prickle so bad I think it's going to drive me mad as a Hatter.

    • Posted

      Hi.  I have diabetic PN and I now have a new normal.  You may already have come across these but here are three things that I have found to be a small help:

      - Soft angora wool socks with shoes and thick sheepskin pancake slippers at home.

      - Foot tent to keep covers off (picture attached).  I made this for forty bucks.  You can buy them online.

      - Small ice packs with velcro straps.  They won't freeze the skin and warm up quickly.  The shock will sometimes trick the nerves into not firing so much (gate theory of pain).

      I am in Canada and lucky to have a great medical system - but they still got nothing, I'm afraid.

       

  • Posted

    I have been suffering with this for a year. I have had all the tests you have plus more. Bottom line no one knows so a cure cannot be prescribed. The last neurologist said it was not life threatening, but more of a nuisance. I accept that. He wanted to give me anti depressants, but I declined  I have been down that route with a previous neurologist with very bad side effects. I am presently seeing a core alignment expert who thinks it could be body tension built up over many years. I am trying to learn how to switch off, but not easy. If you come up with anything please post it.

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