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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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  • youns32235
    youns32235 moimystique

    Posted

    same is the case with me from last four months and i take all medicines but nothing has done feeling pain in my back, legs, arms + hotness like burning every time can any body suggests please
  • marshall71
    marshall71 moimystique

    Posted

    could be peripheral neuropathy the symptoms are numbness tingling lack of coordination and falling muscle weakness you need to ask for some nerve test to be done for find out if any nerves are damage paracetamol and ibuprofen can help for the pain aslo antidepressants work very well have you used capsaicin cream for your legs ? or lidocaine plasters 
  • stephhenboreiko
    stephhenboreiko moimystique

    Posted

    PLEASE READ EVERYONE! Hi all, im a 25 year old male and have all the same symptoms and has progressed exremely fast. Symptoms include horrific pain in buttocks, band like pain in lower back, extreme body stiffness, the stiffness then leads to pain in feet, ankles, knees, hips and spine all the way up to shoulders, fatigue, muscle pain, calfs, thighs, muscle spasms aka tremors and they mostly attack the legs, balance problems and muscle weakness and is also linked to my migranes.

    I HAVE BEEN DIAGNOSED WITH RSD/CRPS ! Let me say it takes allot to have a doctor confirm fhis diagnosis but NEW UPDATE! My doc, who is ausome by the way thought outside the box, he is having an EEG and a muscle biopsy done and thinks it can be BECKER MUSCULAR DYSTROPHY so make sure you guys/gals get checked! I will give you guys an update when done but he is quiteconfident in it coming back positive but he said one interesting thing yall! He said some people can be born with the ssymptoms OR it stays dormant until an injury, illness or mental/stressfull breakdown can occur and triggers the genes mutation and bring on the disease! So get checked for muscular dystrophy. I also noticed that the valuim with the oxycodone is the only thing that lets me walk and he said its bc your muscles are contracted 24/7 which then puts significant pressure on joints like knees, ankles, hips, back, well you get the picture, sound familiar?

    I hope this info helps someone out there bc lord I know i needed it, I know how it feels to sleep, eat, walk, stand and live in pain! And its tough hang in there everyone and find a good doc if yours aint doin enough fire him! And get another!

  • Oboegirl
    Oboegirl moimystique

    Posted

    Hi.  I am sorry that you are going through this.  I am going through something similar, but it includes some other symptoms that you have not listed.  I am not a doctor, but what I have done is try to rule out as much as I can.  I ruled out MS, peripheral neuropathy, thyroid, myasthenia gravis, lyme, post-polio, rheumatoid conditions, autoimmune conditions, and now I am looking at metabolic myopathies.  So, I would suggest an assembly of  all of your symptoms on a piece of paper, and your complete record history as you remember it, all of your tests. Bring these to your doctors appointments.   If you haven't done so, start with a neurologist, then go to a rheumatologist who is a really good diagnostician.  Hopefully, you will get some answers and start to treat your condition.  There is no guarantee because these things are hard to diagnose.  Best of luck.
  • Malachite
    Malachite moimystique

    Posted

    Hope you can find a Good Neurolgist that specializes in nerve pain.  Good Luck and stay positive.  I know it is hard, I too, am going through a similar type of problem which is very, very uncomfortable  and am going to see a a Specialist specifically treats neuropathic pain.  Please let us know if you are any better or still same. Take care!
    • Oboegirl
      Oboegirl Malachite

      Posted

      Hi Malachite-  Sorry to hear that you aren't feeling your best.  I am feeling somewhat better.  I have an appointment with my neuro on Wednesday, and hopefully she can give me a diagnosis or just treat the pain.  In the mean time, I have gone back to P/T and am doing acupuncture.  I hate the acupuncture, not because of the needles but because it is really hard to relax on a narrow slab for 45 minutes with needles in me.  I'll give it a few more tries.  It may end up that the best thing I can do for myself is 1/2 hour of deep stretches every day for the muscle cramps and sleep medication to get me through the nights.  We'll see.  Thanks for your comment.  Kathy
    • Malachite
      Malachite Oboegirl

      Posted

      Hello Oboegirl,  Thank You for your kind words.  It is hard for people, even my pain mgmt Dr. to really listen because he is so busy.  I am going to make a appointment with a Neurologist for my condition. My Dad has been to this Center thatcspecifucally treats neuropathic pain.  I hope that your appointment goes well and they can find a solution to help alleviate the pain you are going through.  I definitely understand and it is hard for my friends and family to understand completely.  My Dad is wonderful understanding and I am very grateful I have him to talk to.  You take care and please keep us up to date on your progress with your new Dr. Stay Strong.  wink
  • janet49913
    janet49913 moimystique

    Posted

    I have been experiencing all of the tingling and burning pain in my legs for a long time now, years, Until a week ago.  I friend told me to Drink a glass of water before going to bed.  I would bet that I was not the only one who was not dirink liquids after 5:00 because of frequent potty problems, which is also I believe connected with this nerve issue.

    This week I have downed a glass of water every night just before going to bed and guess what-- for a week I have not had a sign of the leg tingling burning feeling.  I still get up once a night to go to the bathroom.  Also some of the pains in my stomach area during the night have gone away.  

    It may not work for every one but it is free and can't possibly hurt.

    • Oboegirl
      Oboegirl janet49913

      Posted

      Very interesting.  I have completely changed my diet over the last three weeks to try every avenue possible for recovery.  I am drinking more water, and more in the evening.  I have noticed a decrease in my burning/tingling at night.  Perhaps, if I drink more I can do better.  Question:  At night my legs feel like they are suffocating underneath my blankets.  Only my legs, not the rest of my body.  Is this like anything you or any other reader has experienced or knows about?  My burning and pins/needles actually gets much worse when I take my legs out from under to get air.  Any thoughts?
    • Tumtum1963
      Tumtum1963 Oboegirl

      Posted

      Oboegirl I've just had a large glass of water and am off to sleep. Thanks for this suggestion I hope it works because as you say, it's free and could be a solution right under my nose! X
  • PinoM655
    PinoM655 moimystique

    Posted

    I am extremly interested in this discussion as I have been experiencing this problem for over a year. It all started about 5 days after i hurt my back. So I obviously thought it was connected, However this  seems to be unconnected. I have seen two nueroligests varios physios. I have laid out close on £2000 and no one has given me a solution. The Nueroligest prescribe anti depressents which i coud not handle because of the side effects. I do drink a lot of water, but not before I go to bed. I will try this starting tonight and will post the results. What is annoying I am a fit guy who plays golf 2/3 times a week, but this problem has affected my quality of life. Worse times are sitting down and in bed. any more suggestions please post them it does not matter how trival
    • Oboegirl
      Oboegirl PinoM655

      Posted

      Hi.  I had to give up golf too.  Did your neurologist give you antidepressants because you are depressed over things, or was he/she invalidating your experience?  You need a neurologist who takes your complaints seriously.
    • Malachite
      Malachite PinoM655

      Posted

      I hope it helps you.  Water is definitely good for the body.  Hydration of the body helps the organs and skin.  Please keep us up to date on your progress.  I too, have been to Physiotherapy, have a Medtronics unit, Rods (Fusion in L5S1 area of the back).  Caused a lot of damage having so many surgeries. I wish I had a better knowledge back then. Technology has come a long way, but, for acute, chronic pain, not much.  Take care.
    • PinoM655
      PinoM655 Oboegirl

      Posted

      No the Anti depressants are to block the pain. Did not work and I felt lousy. Have any of you guys been on statins as one of my theories is I have station damage. Regards the golf I have no problems when I am on the move and doing things. My problem is when I am in relaxed mode is sitting down or in bed.
    • Malachite
      Malachite PinoM655

      Posted

      Hello PinoM655,

      Yes, Some depressants are for pain relief.  What I was prescribed was not for pain relief.  I, too, took to depressants for pain, amitripalyine (not sure if I I spelled word right), , probably one of the first medications for my pain relief.  Also, to help me sleep.  It is still prescribed but, for me, sluggish all day, sort of scared me this depressant.  it was way too much of dosage they put me on.  I, too, can do things, but, when I am resting, that is when it gets worse as you, Pino.  I do not know about Station damage, but one Dr. said it could be Restless Leg Syndrome, RLS.  I was given a prescription for RLS without being tested, did not help still.  I Thank You All for your input, I think, I know having someone or a group of people having same or almost same problems that All include Chronic Pain.  I am humbled by anyone's words or advice because I sometimes just feel that for myself, my body has been through the ringer.  Like I stated in one of my earlier posts, if I knew that these Dr.'s now  when I had multiple surgeries, I am sure I would of said, No, will continue with homeopathic, meditation  & P.T. I did not have the resources back then like we have now. Thank you all again and please let me know if anyone has gotten the help they need.  I think it helps encourages us all! 😊

    • PinoM655
      PinoM655 Malachite

      Posted

      When you say you are taking homeopathic medicine. What actually are you taking as I have been down that route with again a little t of side effects. My GP this week informed me that either I go on the anti depressants are to run with the pain. Don't get me wrong he wasn't making a cynical comment just been realistic. I would be interested to hear what vitimans you are on.
    • Malachite
      Malachite PinoM655

      Posted

      Hi Pino, Have talked to others whose use oils such as lavender, Epsom salt baths to help with calming the body and also smells good! New to homeopathic so started Physical Therapy again which first two weeks were very hard! Recommendation from Nutristionist is to drink pomegranate or cherry juice. 100%, not with sugar because has natural sugar in fruit. Also, bananas are a very good for spasms and cramps, has potassium which eating a banana or 2 is better than taking another pill. Also, she said magnesium? But, Will definitely keep in touch with you about other ways but still have to take pain medications which I do not like. But, when my lower back and legs at night are really, really bad, I just am frustrated, stressed and depressed and then have to get procedure they inject shots of lidocaine and something else, think steroids in my back which does help but is only temporary. I hope and pray and try to meditate to try to control the pain, but, it is very hard to try to be in a calming state when in extreme pain. Take care and hope you get some relief soon and definitely find s good nerve/pain specialist that can help you.
    • m11431
      m11431 PinoM655

      Posted

      Are you sure its not your spine? You can not tell through xray, and would need an mri. Alot of people on here will end up having an issue with there spine...
    • PinoM655
      PinoM655 m11431

      Posted

      I have had an MRI on my head neck and lower back. The neck and head were clear, but the lower back showed L4 &L5 discs were touching the nerve. However I was informed that this may be causing the leg tingling, it would not be causing the arms and hand tingling. Are you saying the centre part of my spine could be the culprit. I have now been suffering for 18 months. Diagnosis from neurologist is damaged Fibre nerves. He wants me to go on a Antidepressant, which I have declined as I tried them for a month with bad side effects.
    • m11431
      m11431 PinoM655

      Posted

      I think that was a smart decision to stay away from the antidepressants! I have a similar situation...and it too, occurred right after hurting my back. So, its hard for me not to relate these two. I also had another MRI not to long after, and it was very different! For whatever reason an MRI wont always pick up everything.

      Luckily, the arms and such did go away after a few months, but the lumbar spine got much worse....and now i am having trouble with my feet and legs below the knees.

    • maggie80535
      maggie80535 Oboegirl

      Posted

      I have peripheral neuropathy. Amitriptyline is known to be helpful for this, as is magnesium , all the B vitamins but especially B1 and B12 , Vitamin D and Alpha Lipoic Acic.You need massive doses of the Bs. And ALA to cure the pain and burning.Sounds like you have PN too.Acupuncture and lower back massage helps greatly too.
    • PinoM655
      PinoM655 maggie80535

      Posted

      I found your comments very interesting especially the accupuncture, it is the one area I have not tried. I know so little about it, is there any particular accupuncture I should try or are there all the same?
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