1. Community
  2. Brain and nerves
  3. Neuropathic Pain

Severe tingling, burning + pain in both legs

Posted , 205 users are following.

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

Prev Next
  • kendra86930
    kendra86930 moimystique

    Posted

    I seem to sleep at night with little pain, but I wake up tired. Does anyone have a lot of fatigue with neurophy?
    • jane75220
      jane75220 MarieAzzi84

      Posted

      Have you tried taking some pain killers and a drink of hot milk in bed  ? The milk contains an enzyme that relaxes and then promotes sleep.

       

    • jane75220
      jane75220 kendra86930

      Posted

      Kendra Have you been checkd for anaemia including a low ferritin level, Vitamin B12 , in the UK values are much lowerr so diagnosis often missed. The values are much highter in the US and  Japan  hence less cases  of peripheral neuropathy and pernicious anaemia.
    • kendra86930
      kendra86930 jane75220

      Posted

      Jane, i have been checked for deficiencies.I have been low on B12 for a few years. I'm sure that why I have neurophy. Has anyone gotten better by getting level of B12 up? I'm just so exhausted most of time. Guess it's from the pain.

    • jane75220
      jane75220 kendra86930

      Posted

      I understand from my research that it is reversible with adequate Vit B12 injections. There is a we bsite called the pernicious anaemia socirty with lots of valuable accurate information.

      Anaemia can  be very debilitating causing a lot of signs and symptoms including fast heart rate, tiredness, no ebnergy, loss of interest in food, dizziness, palpitations, light headedness. Thoose are the classic signs and symptoms and only blood tests can determine the diagnosis and the type of anaemia. If being tested for pernicious anaemia please do not take any vitamin B1 as this can give inaccurate results and g diagnosis missed.

      Anaemia of any type is treatable but can take a few weeks according to my drs..xxxx

       

  • christy463
    christy463 moimystique

    Posted

    I've been having a lot of the same symptoms. I'm 35 and it all started out of no where about 5 months ago mine started with my left arm feeling heaving, very cold to the touch, tingling, my veins became distended. I of course thought I was as having a heart attack so I went to the ER they ran the normal cardiac tests and everything was normal. They then did a Doppler from my neck down my arm and everything was normal. From that day on I began having numbness, tingling, and nerve pain in my arms, hands, feet, legs, scalp, side of my face, sharp stabbing pains all over. My veins in my arms and hands become very distended off and on through out the day everyday. I go from having the perfect veins to draw blood from to not being able to see them and I'm very pale so my veins have always been very visible. I've had changes in my vision. I've had the typical butterflie rash on my face several times. I've felt like I was completely confused at times or felt like I all the sudden had no idea what I was doing. I have muscle weakness. I drop stuff constantly now. I've been tested for Lupus, MS, RA. I've had MRIs of my brain and c-spine both normal. I've had a VEP test on my eyes which was normal. Every blood test possible and everything has been normal. I'm on Gabapentin 1200mg per day, Noravasc to dialate my blood vessels, cymbalta 60mg per day and all of that just takes the edge off. I'm a nurse at a family practice and I know I've scared the mess out of my patients when out of no where I say "ouch" because that sharp stabbing pain catches my off guard. I'm so over this mess. By the time I get home my joints are hurting on top of everything else.

    • jane75220
      jane75220 christy463

      Posted

      0 ,gms and it made me very ill. My GP immediately discontinued it.Cymbalta causes spasms and cramps plus tachycardia. Lyrica caused cortical myoclonus.

      Are you on these drugs  for nerve pain? Some people just cannot take these drugs.

    • PinoM655
      PinoM655 christy463

      Posted

      My symptoms are similar apart from the pain when touched. I was diagnosed with Prephial neuropathy. Although I am convinced it is muscle related. However my GP will not accept this and I am on 900mg Gabapentin a day. Not sure who to see to have my muscles tested. Not getting a lot of support from GP now. Did at beginning and had all blood tests going and everything normal. They use the word idiopathic which means have not a clue what is causing the problem.
    • katie159
      katie159 PinoM655

      Posted

      look into the possibility that you may be histamine intolerant because the doctors really dont have a clue, they simply try to treat the symptoms and make the cause worse.
    • christy463
      christy463 jane75220

      Posted

      My primary care physician put me on Gabapentin 300mg 3 times a day and it wasn't working so he told me I could take 600mg 3 times a day and that wasn't working so he changed me to cymbalta and that wasn't working so my neurologist told me to take both and see if it works. It's helped with some of my symptoms but my other symptoms like muscle weakness and joint pain are getting worse.

    • christy463
      christy463 jane75220

      Posted

      I am taking them for nerve pain. I have small fiber neuropathy along with several other symptoms. I haven't experienced any spasms or tachycardia. I also have Raynaud's syndrome, but it is not caused by cold or hot temperatures like most so my Dr has me on a calcium channel blocker to help with that . II've only been taking it for 3 days so I know it may take a few weeks to get in my system.

    • jane75220
      jane75220 christy463

      Posted

      Sorry to read this.Perhaps your dr may discontinue these drugs if they are not helping?
    • christy463
      christy463 PinoM655

      Posted

      My neurologist is doing a Electromyogram and a Nerve conduction study on me because I'm having muscle weakness and pain along with the neuropathy.

    • christy463
      christy463 jane75220

      Posted

      I've only been on the calcium channel blocker for a few days and it has helped a little. In many cases with neuropathy the Dr has to find a dose that works for each patient. I'm still in that faze of finding what works. Also it is not recommended to D/C certain meds all of the sudden especially Gabapentin. I'm fortunate enough to work with my primary care physician along with several other physicians so they have seen first hand what I'm experiencing while I'm at work. They saw me go from perfectly healthy one day to having sudden onset neuropathy along with several other symptoms.

    • jane75220
      jane75220 christy463

      Posted

      Yes I realise that you should not d/c the drugs unless medically suervised.xxx
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.