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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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  • amanda11305
    amanda11305 moimystique

    Posted

    HAS YOUR G.P DONE X RAYS OR SENT YOU TO SEE A SPECIALIST.

    I HAD MANY OF YOUR SYPTOMS AND AFTER X RAYS I WAS FOUND TO HAVE TENDONITIS IN BOTH ACHILIES TENDONS.

    UNFORTUANTLY AFTER SEVERAL SURGERIES THE PAIN THAT I HAVE IS WORSE AS IT IS NOW NERVE PAIN .

    I AM TAKING GABAPENTIN AND MORPHINE FOR THE PAIN AND ORAMORPH FOR BREAK THROUGH PAIN RELIEF.

    AMATYPTALINE IS MY NIGHT TIME TABLETS AND CAN HELP YOU GET 2 HOURS SLEEP BUT SHARP PAIN AND TINGLING CAN LESSON THE EFFECTIVNESS OF ANY TABLETS.

    ASK YOUR G.P IF YOU CAN TRY ANY OF THE ABOVE.

    I AM OFFER MY SYMPATHY I HAVE BEEN STUGGLING WITH THIS FOR SEVERAL YEARS NOW AND HAVE BEEN TOLD THAT I WILL NEVER GET BETTER AND OVER TINME I WILL ONLY GET WORSE.

    THIS CAN MAKE YOU FEEL VERY DOWN.

    ASK YOUR G.P IF YOU CAN BE REFERRED TO THE PAIN CLINIC THIS MAY HELP 

  • matt66
    matt66 moimystique

    Posted

    Hiya! Sorry, I can't see if this has been asked / done, but:

    1. Do you get swelling much if at all

    2. If so, which area, ankle, calf, the bit inbetween?

    3. Have you had a kidney function test at all?

    when all mine started they ballooned massively. My feet were huge, the calf was 21" in circumference (it was massive), but the ankle up to calf was OK. After getting that under control, it flares up whenever I have a slight kidney infection. My kidneys are not good anyway, so just walking over the road into town puffs them out a bit, but not like before.

    let us know on those points and then if not will think of anything else. I've has such a lot of problems with my legs and about 10 different diagnoses.

    best wishes.

    • moimystique
      moimystique matt66

      Posted

      Hi!

      Thanks for your info.

      I don't have much swelling in my legs, but I notice that the sides of my knees swell just a little bit - I can tell when I put my legs together. It disappears as I walk during the day. I've had a kidney function test and it was normal. I've been asked to do a PTH test soon - will let you know how that goes. Thanks a ton!

       

  • Mouge
    Mouge moimystique

    Posted

    Hello, I have similar undiagnosed pain in my legs and also back pain and stiffness for two years now. I have been checked for rhematoids, herniated dics, knee problems but no diagnose. I have recently heard that celiac disease might cause weird pain symptoms. I will have it checked soon. Maybe you might try your chance too. Good luck.
    • moimystique
      moimystique Mouge

      Posted

      Thanks Mouge! I did a test for gluten allergy and celiac disease and it was negative. I had a lot of lower back pain too, and I still do, esp. while lying down. Hopefully we'll find out what it is soon rolleyes Good luck!
  • jan23913
    jan23913 moimystique

    Posted

    hi i know exactly what you are going through..i was told i am deficiant in B12 years ago and have injections for it but the pain has worsened over the last couple of years ..the only way i can describe it is its like having a contant migraine in both legs or your worse toothache..the pain is constant and worse at night when laying down..its unrelentant and i only manage to get a couple of hours sleep every night the only thing that relieves it even a tiny bit is if i hang one or both legs over the bed so its hanging down...i have been given LYCRA for it by my gp but the side effects are awful..they make me feel drunk,very unsteady on my feet and i cant walk straight so i have stopped taking them and hope to get something else off my doctor is there any medication that any other readers are taking that i could suggest to my doctor?...i am at the end of my tether with the pain..i have no quality of life at the moment..i also get like stabbing pains in my knees...i also have RLS  which is a another nightmare but i can usually control that with my medication
    • vicki71777
      vicki71777 jan23913

      Posted

      jan i am being tested for MS or a spinal cord injury that i may have obtained in a bad fall..i know how horrible you feel and i can hardly get out of bed but it seems to lighten up if i keep moving..but..the more i move the better it feels and then i lay down..ouch ouch ouch ice packs ice packs and more and i am lucky if i can sleep for 2 hours at a time..i have no life anymore and am just hoping the neurologist i am seeing and the back doctor can come up with something!!! i too have RLS but this is so different i dont know what to do..if anyone can help us..please???

       

    • jodie39832
      jodie39832 vicki71777

      Posted

      Vicki, arachnoiditis can start after a fall. Perhaps you should have a look at that?
    • sheila26060
      sheila26060 jan23913

      Posted

      Try cutting out sugar and definitely do not use artificial sugar instead. This has helped me
  • fred70884
    fred70884 moimystique

    Posted

    Yes dear morphine sulphate 30mg 3 times daily will help.
    • kendra86930
      kendra86930 fred70884

      Posted

      Where can u get morphine? My daughter has something similar, but dr took her off medicine.

      Thanks

  • tony_1416
    tony_1416 moimystique

    Posted

    Hi

    I am suffering very similar symptoms with the burning and tingling it gets really bad sometimes but comes and goes and Its fine at night  I am managing to sleep, I also get tightness and some numbness in my feet. It feels as if my toes are all tied together.

     My GP appears not to be taking it serously she is sending me to a Musculoskeletal physiotherapist, I'm not sure they are the right people to be seeing. but we will see.

    As i say I am fine at night and Ok in the morning but as the day wears on it gets worse and worse, it's not to bad when I am moving about but when I sit down it comes on very quickly, and as my job entails a lot of sitting down well you can iamagine. I take paracetamol which can help but not always, wondered if anyone could advise on better pain relief and do I have to get it through my GP.

    Thank you!

     

    • simon14319
      simon14319 tony_1416

      Posted

      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.

       

    • linda54686
      linda54686 tony_1416

      Posted

      Hi tony..not sure how old your post was as im new on here but u had exactly same symptoms as I have and im wondering how you are now?..im over a year undiagnosed my pain in muscles started in arms and moved to legs arms fine now. its like sciatic pain in back.of thighs and glutes every day..but not when I sleep and I sleep well...had spine mri ..many blood tests..seen rhumatologists..neurologists all clear..so fed up with it ..im 58 im not lethargic at all tho.did have anxiety at first as it scared the hell out of me and twitching but thats settled.. when i walk it eases but sitting down is so painful...any ideas .have u been diagnosed now..
  • Tumtum1963
    Tumtum1963 moimystique

    Posted

    Hi Moimystique. I have the same symptoms as you but in my hands and arms too and, apart from a high ESR and a diagnosis of seronegative, non-erosive RA, no one is any the wiser yet for me as my immunology is all negative too. My neurologist did confirm that, after 18 months of this getting slowly worse, I appear to have a small fiber neuropathy affecting each limb equally now. At the end of this week I'm to have an MRI of my brain and cervical spine and a lumbar puncture.

    These are not expected to tell my neurologist anything much but should rule out MS and CIDP. Yours sounds worse in legs than mine - although mine is very painful often at night and it does affect my gait sometimes with the numbness. But my hands and wrists are really bad at night too so this shows it is quite advanced I'm told.

    I take the lowest dose of Cymbalta now having failed to tolerate Amitriptyline, Gaberpentin, Pamiprexole for RLS (tgis hospitalised me!) and three disease modifying drugs for my RA. I also take 100mcg for hypothyroydism. Have they ruled out prediabetes for you too?

    • Tumtum1963
      Tumtum1963

      Posted

      PS - suggest you ask for a lumbar puncture to exclude CIDP and Lyme
    • jodie39832
      jodie39832 Tumtum1963

      Posted

      Did you have any luck? I have the same. I'm looking at arachnoiditis. Have you heard of or been tested for that?

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