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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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  • susan75999
    susan75999 moimystique

    Posted

    Sounds exactly like my symptoms I'm on gabepentin 800mg x3daily. The electric shock pain goes through the roof 12/10 nothing touches it. 

  • jodee60412
    jodee60412 moimystique

    Posted

    I am at the beginning trying to figure out how to help with this terrible burning in my feet and legs and back .No one could even comprehend the pain that comes with this unless you have had to deal with it .It is unbearable I don't even think the number 10 can describe this pain any more. I have tried vitamin D and magnesium the magnesium seems to help some but I really want to try the injectable vitamin b 12. I really believe it has somthing to do with it. I also believe intolernces to some foods plays a part .I think sugar makes mine worse and milk and bread.I have been diagnosed with fibromyalgia but I have never been to a neurologist that is my next thing I am going to try but I don't have much hope because so far my doctors have done nothing to help me . I'm going to ask for some lyrica maybe that will help .If any one has any ideas please let me know .There is another weird thing that happens the pain burning aching in my legs happen after I sleep and wake up not at night but in the morning or if I wake up in the middle of the night and stand up weird I don't get it .

    • acydgod
      acydgod jodee60412

      Posted

      Jodee, I would recommend getting a full MRI and EMG/conduction test to see if nerve compression could be the cause.

      I too hand burning and aches in my legs as the initial symptom.

    • jess73631
      jess73631 jodee60412

      Posted

      Jodee, The rates of fibromyalgia are quite a bit higher in people diagnosed with diabetes,  and diabetics also suffer very much from nerve damage and foot problems.  I think anyone with this awful neuropathy pain/burning/freezing feelings should check their blood sugar levels, because although not hitting the very high glucose levels which get one a diagnoses of diabetes we could be 'pre-diabetic'...with Blood sugar levels high enough to do damage to the very tiny capilliaries in the feet and hands (which are further away for the heart to pump the blood too also).  If the capilliaries and tiny veins are damaged then it will stop adequate nutrients getting into them and disrupt nerve signals. (this is just my 'theory'. I am not medically trained....although I have spent so much time researching the condition I probably could be lol!).  You say you feel sugar, milk and bread make yours 'worse'....well those three foods all cause high rises in blood sugar, especially the bread. 

    • jess73631
      jess73631 jodee60412

      Posted

      Jodee,  If your pains are worse after you have slept it would seem that the blood is perhaps not circulating as fast or as strongly as when you are awake (which I am sure is the case for most people)  but if the circulation in made worse by damage to the tiny veins in the toes and feet that could be why you hurt more when you first wake up.  When you start moving about the walking action helps pump the blood around more strongly What I am standing up and down on tip toes about 4 times a day  (20 or thirty times up on tip toes and then down again each session)...i hold on lighty to a chair or table for balance.  I am keeping my BG very low by having a very low carbohydrate diet. It was difficult to stick to this at first (craving for the sugars breads etc)  but now I know that it is working I don't find it a problem at all.

    • darlene47772
      darlene47772 jodee60412

      Posted

      I went to see see a Neurologist Tuesday he believes it nerve damage so he has me doing

      150 mg of Lyrica a day. In a week 200mg a day.

      He also told me can't make you 30 again and my reply was if you could you would be rich I just want

      you to help me stop hurting so I can sleep.

      Go back 3 months if still hurting nerve test. I feel everyone's pain and understand.

  • mary11654
    mary11654 moimystique

    Posted

    I I have been dealing with stinging pains in my legs I fell in a box of hangers and hurt my legs the doctor I'm seeing thanks I bruise the nerves in my legs they haven't done a nerve conduct test but the next time I go to the doctor I'm going to tell him I want it done

  • mary11654
    mary11654 moimystique

    Posted

    I'm thinking about having a nerve conduct test done I'm going to tell the doctor I need one done I'm sick of this pain I fell in a box of hangers and the doctor thinks I bruised the nerve somewhere in my leg and that might be causing the problems I'm having with the pains and the stinging in my legs like you're being stung by a bee all over your legs I hope it doesn't travel further up I'm going to try CBDs because I read that it helps with nerve problems

  • mary11654
    mary11654 moimystique

    Posted

    what brought mine on is that I had an accident by falling into a box injuring my nerve in my leg and now I have to deal with this crap so I'm going to try CBDs again I Tried them for one month and I'm going to try to get some more because I think it helped I have been without it for a while and suffering with pain so I thought I would let you know what I have tried and I read up on it and it says that CBDs does help with nerve damage so when I can get some more I will try it again but right now the store is out of it

    • donald12062
      donald12062 mary11654

      Posted

      I guess that I'm a dummy, but what are CBD's ?

      Please keep us updated !

  • cynthia3344
    cynthia3344 moimystique

    Posted

    Hello  I am on 1mg  of Mirapex  three times a day. I started on 0.25mg  and titrated up over then next month and half to reach the 1mg  three times a day for my full body CRPS. Took about 2.5 weeks to start to feel any difference in pain. Then in  that month and half all of my pain stopped! Many doctors do not go up on the dosage and you don't get the full effects of this med. Yes if you also have a compulsive tendency that will this med will increase it if you don't  control that tendency.  I also have a deficiency in Vit D also but believe with being on Hormones , which everyone should have their levels tested anyway, contributes to that and the CRPS also I believe contributes to this. I know this med may not work completely for everyone but  you need to go up on your dosage . .025mg is not enough to get the full effects of this med. Dx with CRPS in 2001 and started this med Mirapex in 2011 nand have been on ever since to present time 2018. Wish you luck and might ask you doctor to increase this med and if on any type of gabapentin/neurontin to be taken off it. 

    • donald12062
      donald12062 cynthia3344

      Posted

      I've been on 1mg of Mirapex for over 20 years now for tremors in my hands !

      The Mirapex ha done nothing for my neuropathic pain in both of feet and toes !

      Good luck to you !

  • donald12062
    donald12062 moimystique

    Posted

    I've had neuropathic pain in both feet and toes for about 5 years !

    The pain is constant and severe !

    I've tried every treatment, too many injections that I can't even count how many !

    I even had surgery on my leg, foot and toes without any pain relief !

    My last resort is going to a pain management doctor to discuss implanting a nerve stimulater !!

    I'll keep everyone updated on the process of the nerve stimulater !

    • darlene47772
      darlene47772 donald12062

      Posted

      Hi Donald did you have a nerve simulater put in  and has it helped?

      Keep s posted.

  • shona53538
    shona53538 moimystique

    Posted

    Gosh ive had burning in my legs lower arms one lower side of face for 18months now started with what dr said was shingles without rash .on right thigh but progressed .i get odd small sensation of cold .as well..sometimes the burning is on both kbees or calves .sometimes right lower arm and lower leg feels like a band around them .i walk everyday ive a lot of energy .i eat healthy .i lost my darling husband ten months ago and our wee Grandson 10 weeks prior .then Motheri law 6 weeks after my Husband .so lots of stress .im over drs hospitals .just want this to stop.like most of you i dnt notice it whilst going about my day but when i lie down it prickles etc....
    • Peonygirl1
      Peonygirl1 shona53538

      Posted

      Hi Shona, wow you have had a lot to deal with girl. Makes my heart ache for you. Having physical pain daily is very hard to deal with and add such losses in your life is just beyond hurting so much everywhere, body and mind. I think you are one brave woman and I want to recognize your efforts. I have nerve damage, neuropathy and live with chronic pain all of the time. My symptoms are very similar to yours. I have had every therapy, all the numbing shots and even have a nerve stimulator inplant. I still have to rely on opiates for any quality of life. At this point I have accepted (not like) the new me, way different than my real self. I mourne the loss of me daily but I am also grateful for the doctor support and the most important support of my husband. It takes a long time to reach some peace with this journey and you have such heartache to deal with. I send my sympathies and hope you will find some peace of mind and body. 🕊🌹

    • jess73631
      jess73631 shona53538

      Posted

      Do you still have the rash?  What did it look like? Was it itchy at all.  Check for Dermatitis Herpitiforme,  this is a very itchy blictery rash, sometimes mistaken for shingles but is ALWAYS caused by gluten.
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