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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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  • matt66
    matt66 moimystique

    Posted

     I've had intractable peripheral neuropathy for 7 years now. When it first came up I went straight to a neurologist. The tests I remember were Venus doppler and a nerve conductivity test (small needles in calves to check electric pulses).

    been on the lot...lyrics, gabapentin, fentanyl patches and each worked a bit. Now I'm on oxycodone MR and oxycontin IR.

    if you haven't, I'd try to push for nerve conductivity.

     good luck.

    • jane75220
      jane75220 matt66

      Posted

      Have you been checked for vitamin B1 or Vit D deficiencies?hese can cause peripheral neuropathy. There are several fora about thi condition together with masses of info and guidelines. Take care

      ​Jane xxx

  • Kersey
    Kersey moimystique

    Posted

    I have been diagnosed with idiopathic peripheral neuropathy for over a year now - had symptoms for several years but it took paying privately to see a neurologist to get a diagnosis.  I have sensitivity to bedsheets, touch, feet and legs have a numbness like having socks on, shooting pains, feelings like water trickling on skin, pain is excruitiating at times - cant sleep for up to 48 hours at a time.  I have been referred to a pain management clinic but to be honest this is more about coping than any real relief.  I am thinking of going to my GP to ask about pain relief but I always have bad reactions to medication so I am nervous.  Would be really gratefull for your input on what medication to ask her about.  She is usually very receptive but I find I have to ask her about specific medications.  I cant take NSAIDs or oromorph, or codeine as these all make me vomit blood and also I get very constipated.  I feel like I am walking on sponges most of the time so mobility is compromised - I use a rollator now to feel stable when I am walking about outside.  I have tried Capiscum cream but it doesnt do much.  Piroxicam gel has helped a bit.  I spent a week in hospital in January but all it did was muck up my insides with oromorph and codeine - I had to refuse to take them in the end.  Physio is trying acupuncture presently but to be honest it is not having much effect.
    • fred70884
      fred70884 Kersey

      Posted

      Well Kersey,i don't know if you will have a reaction,but morphine sulphate completely cures this !
    • Tumtum1963
      Tumtum1963 fred70884

      Posted

      I find Tramadol 100mg slow release helps me. I can't take NSAIDs or any the nerve pain drugs such as Amitriptyline or Gaberpentin etc because they affect my GI tract too badly. Codeine blocks me up too much. Morphine didn't help much but Tramadol does. It keeps me awake all night though as it makes my heart thud and makes me a little stoned too so I am trying to take it once every few nights so I don't get hooked. I would rather have Tramadol induced insomnia than pain induced insomnia.
    • Malachite
      Malachite Kersey

      Posted

      Kersey, I would definitely try to see a nerve/pain specialist. I too, have most of the symptoms and Yes, pain medications can cause constipation. Which for me, is another problem. But, new research for nerve pain and medications are out there for specific types of pain. Also, specific medications for opiod constipation. Definitely want to try. Always talk with your Dr. first. RLS, they thought I had, which they prescribed Lyrica with pain medication. It did not help and now, the pain is worse. Especially when trying to sleep, the pain increases! Very, very uncomfortable and can't sleep a full night until I am so exhausted from nights of not having a good night rest. I hope you can find a solution or least some help with your leg pain. Would definitely like to hear from you again to see if you have any luck. I, too hope can find right diagnosis and be able to have a functional life instead of continual pain. Take care.
    • andy89516
      andy89516 fred70884

      Posted

      hi,

      i have all pains in my right top part of my leg, burning,electric shocks,numness,tinling,keeps me awake all night,fills like its going to explode, theses morphine are that tablets,or patches ???

    • liz61359
      liz61359 fred70884

      Posted

      There is no "cure" for this! You were lucky to have a pain med that gave you relief! It just "masked" the symptoms ......sorry and painful to say, there is NO CURE sad

    • Susan9824
      Susan9824 liz61359

      Posted

      I wish someone would come up with help. It's a nightmare every day.

    • acydgod
      acydgod Susan9824

      Posted

      Hi Susan, I skimmed through many of these posts and can say I experienced most of them:

      Joint aches, fatigue, burning sensations that come and go (different places), cold/numb feet, hands, even depression.

      I spent the better part of 2 years getting MRI, EMGs and seeing about 10 doctors from neurologists to rheumatologists.

      I was terribly discouraged by the different opinions and really lack of help from all.

      The good news is today I am completely symptom free.

      I believe (for me) the cause was all related to my neck and brought on by a combination of desk/computer job, looking down at my phone, and weight lifting at the gym (primarily chest).

      Out of all those sources, what I found best by far was YouTube where you can find many people with the same symptoms. There are several chiropractors who make detailed videos explaining how all these symptoms can be cause by nerve and blood flow restriction.

      In the end, it was a combo of chiro, massage, and physical therapy to teach me how to correct my postural imbalance.

      I would recommend checking out those videos and also searching (Google) "forward head position"

      (fhp).

  • moimystique
    moimystique

    Posted

    Thanks everyone for your help! It's been four months since I posted. I still have the pain, and this definitely doesn't look like RLS as it gets worse with any strain or exercise (walking/running, etc.) and the tingling is sometimes constant and throughout the day. The pain is severe sometimes. I also have lower back and stomach ache when I lie down - have no idea if that is related though.

    I got a Doppler test done and it looks like my circulation is fine. I've switched to alternative medicine (Ayurveda and homeopathy) but nothing has drastically improved so far. Some of the pain oils seem to help. Before I sleep, I drink a glass of milk with turmeric powder in it, and this helps me sleep longer hours without waking up.

    Someone has suggested acupressure to me - going to try that and see if it makes a difference. Will let you know if it works!

    Thanks again,

    Ramya

    • Susan9824
      Susan9824 moimystique

      Posted

      I too am living your nightmare. All tests come up fine. Can't do any exercise at all. Pills make me sick. Some day someone has to find a cute.

  • sheila1
    sheila1 moimystique

    Posted

    Hi everyone,

    I am having the same severe burning/stabbing/tingling pain in both of my legs,

    well that's where it starts then it spreads all over my body.it's driving me insane,

    there's no relief from it.

    I have pain in my neck/head/shoulder and between my shoulder blades which is

    from my Cervical Spondylosis.I've been off work for 2 years now and just when

    you think it can't get much worse, This severe burning flared up a few weeks ago.

    I am on Tramadol, Paracetamol, Amitriptyline 75mg at night, Citalopram 40 mg as

    the pain is causing depression.

    I have been on Gabapentin then Pregabalin but the side effects were so bad I came off them.

    I am now also on Robaxin-750 it's a muscle relaxant and then when it all gets too much to bare I have Oramorph which knocks me out.But this burning won't go

    away.I have an appointment with the Pain Clinic at the end of the month but that

    feels a long long way away.

    I've made another appointment with my GP for Monday morning.I don't know what else to do.

    So I am so sorry I can't give you any answers, but I don't feel so alone as I know

    other's are suffering with the same symptoms.

    • amanda11305
      amanda11305 sheila1

      Posted

      ASK YOUR G.P TO TEST FOR FIBROMYALGIA

      MANY OF YOUR SYPTOMS FIT THIS DISEASE.

      I HAVE TO AUNT'S WITH THIS DIEASE AND TEY STARTED WITH THE SAME THINGS YOU HAVE.

      HOPE THIS HELP'S

    • sheila1
      sheila1 amanda11305

      Posted

      Thanks for your reply Amanda,

      I was diagnosed with secondary Fibromyalgia 9 years ago when I was

      diagnosed with cervical spondylitis and after 11 months on

      sick managed to get back to work, since then I've had flare ups but

      manage them.

      Sheila

    • simon14319
      simon14319 sheila1

      Posted

      sheila,

            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 plaease.. Hope this will help  i am sure..God bless.

    • kenny_02267
      kenny_02267 sheila1

      Posted

      Wow, I am amazed at how you describe these horrible symptoms, because it describes me perfectly. Mine only started a few weeks ago and depression has already set in. I sure hope your pain ends or at least is controlled. Some days and nights it's not as horrible and you think maybe it's letting up, then the next day it's right back stronger.when I walk on my feet for a while then set down, I have shooting pains all in my feet and twitching muscles all in my calfs. My hands ache even when typing, and it's more hard than ever to grip something. I started taking alot of the vitamins that is described on this Forum which seems to help a little. So far about the only way I'm half way comfortable is to set on the sofa, but you can still feel the pain. Neurapathy definitely takes the quality right out of your life.
    • PinoM655
      PinoM655 kenny_02267

      Posted

      The first question I would ask myself. Are you on statins. I have very similar symptoms and have had them for 18 months. I have spent in excess of £2000 to solve the problem without success. This includes 2 Nueroligests and MRI scans. Then I read about statin damage which is now becoming more common. My Dr did not want to know, but it started taking CoQ10 tablets and eating berries. I am not cured and I do not think of ever will be, but I have seen a big improvement. 
    • gill98459
      gill98459 PinoM655

      Posted

      Hi,

      I've been having similar and sins for a while now and my GP too is struggling to diagnose me. I've been to spinal neurosurgeons recently, investigating possible issues with my spine, with no success. My pains appear to be isolated to my calf area and not my feet. Is that the same or is yours more widespread?

      I worry about depression setting as for e.g. it's 3am right now and I've been up for a couple of hours with this pain.

      But, I'm doing my research and will be pushing for more tests even a electromyography if necessary.

      Hope your situation improves.

    • PinoM655
      PinoM655 gill98459

      Posted

      Sounds similar, but get it in my arms, feet nd skull. Diagnosed as perphial neuropathy caused by idiopathic means. In other words haven't a cue. I have seen everyone. I have bean on various antidepressants, but could not handle side effects. Presently on Gabapentin, no side effects, but not stopping the pain although some improvements. Thinking of upping the dose.

      i am interested in your case so keep me informed, especially with the electromyography

    • oconaith
      oconaith gill98459

      Posted

      Cheers,

      Been having the same symptoms. Pain, burning, tingling and numbness. I tried all sorts of drugs and exercises with few positive results. Finally, a neurologist put me on DULOXATINE, an anti-depressant which is also precribed for nerve pain. It takes a couple weeks to kick in but, for me, it is really helping. Not only does it relieve the nerve pain, it fights off the depression. Also, I am having NO side effects. I believe duloxatine is the cheaper generic version of Cymbalta. I hope this helps.  Peace   M

    • MarieAzzi84
      MarieAzzi84 oconaith

      Posted

      I've had this problem for 16 years now and still trying to get meds stable I don't sleep at night due to chronic pain so have to take sleeping tablet I do take duluxetine 60mg but not sure whether it helps or not fed up with taking too many pills

    • ellen41352
      ellen41352 MarieAzzi84

      Posted

      Started taking Cymbalta also about three weeks ago and it's helping me

    • michael19785
      michael19785 ellen41352

      Posted

      Ellen and MarieAzz, none of these drugs have ever helped me lyrica for 2 years, shots in my legs, many other modalities, but I thank god and universe for finding this site...thought I was crazy and alone, lost friends and a fiancee due to the loss of normal life, but at least I have a gang now that I may speak with and cry with as we fight to find a solution, thank you to Patient.info, there aren't many sites like this..please keep it open, we need  each other...will write couple of days, some relief at not being alone......

    • todd31433
      todd31433 simon14319

      Posted

      Hi, could you please call me at 215-860-6085. I wanted to ask you if the metformin helped the burning legs, I am on amaryl 6 mg a day, sugars are about 170 in morning. Ity would be a miricale if this metformin would do the trick. Thanks, Brad
    • judy11606
      judy11606 todd31433

      Posted

      I take metformin for my sugar doesn't help my legs though

    • minola72934
      minola72934 gill98459

      Posted

      My pain is also in my calf and I have only had blood work done. I have been told that I am deficient in potassium and have been taking supplements for about a month and I am still having pain. Will be pushing for more testing on nerves, and ruling out other diseases.

    • Susan9824
      Susan9824 PinoM655

      Posted

      Mine started with a statin for cholesterol called Crestor. I now live a daily nightmare. Can no longer tolerate any type of exercise. Sleep is horrendous. Burning and twitching day and night like a thousand bees are inn my calves.
    • sheila26060
      sheila26060 simon14319

      Posted

      Simon, I believe it is sugar that's causing my burning sensation in my feet, calves, knees and also my elbows and jaw. If I eat something with sugar in it after 5 or 6 in the evening, then I will not get a wink of sleep that night. The only way I can get some relief is if I use a cold wet facecloth on all burning body parts. My dr has never heard of these symptoms. But I have discovered via a process of elimination that it is due to sugar and sugar is hidden in an awful lot of foods. Therefore I cook from scratch 99% of the time, and find if I do eat something with sugar, then I won't get any sleep that night

    • mary11654
      mary11654 ellen41352

      Posted

      are there any side effects to this medicine I tried CBDs Plus I took it for about a month and I ran out of it and I can sure tell the difference I have been in a lot of pain without it in February I fell in a box and hurt my knees and legs the doctor thinks I bruised the nerve but he doesn't really know cuz he haven't done no test but when I go back I'm going to have him do a nerve conducting test

    • jess73631
      jess73631 sheila26060

      Posted

      Sheila......I also think that the pain in my feet and calves, and hands also at times, is due to sugar!  How are you getting on, have the pains lessened overall since you almost eliminates sugar?  i find mine is not only sugar, but most carbohydrates (which all turn to sugar in the stomach).  I also have had to figure this out for myself, I bought a Blood Glucose meter and testing strips and discovered that even though the GP insists I am not 'diabetic' (and have never been over weight, in fact always on the skinny side) my blood sugars went very high after meals.  This sudden rise and then fall is what does the damage. Do you still have the pain? Or has removing sugar helped in any noticeable or longstanding way?     

    • jess73631
      jess73631 sheila26060

      Posted

      Yes, I believe that it is high blood sugar which damages ALL the nerves in the body....but it damages them silently over years...and our first clue that damage is being caused is all these stinging, burning and stabbing pains in the feet!   But damage is also being caused in the eyes, the kidneys and the brain....but these will show up later,,,if the blood sugar is not kept below 7.5 at ALL TIMES!   Each time it goes above that figure damage is being done to the body. I don't believe that the neuropathy is incurable....because I have cured mine!  Buy a blood sugar monitor and test your blood sugar  for  couple of weeks to find out exactly what your levels are throughout an average day.  I go my meter from Lloyds pharmachy (£25!,,a very small price to pay for relief of the terrible neuropathy. There are no pills that can help at all in curing this condition. Painkillers may mask or suppress the symptoms and pain...but they are not getting rid of he condition...in fact they help it get worse because people get a bit of relief and think the pills are 'working'. 

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