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Peripheral neoutopathy worried what can I do

Posted , 9 users are following.

Dingle_dell
Dingle_dell

I would like to hear from other sufferers how they deal with this. I cant seem to get any help.

0 likes, 40 replies

40 Replies

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  • pippa58442
    pippa58442 Dingle_dell

    Posted

    There isn't a lot of help for neuropathy other than nerve medications which can cause other problems. It cannot be cured. Your best bet is to try and live with it.I find heat helps my neuralgia.

    • Dingle_dell
      Dingle_dell pippa58442

      Posted

      thank you Pippa, I do find heat helps, but the burning tingling pain wakes me up at night. pain from feet and hands then creeps up to inside my chest, i get quite worried.

    • dawn68509
      dawn68509 Dingle_dell

      Posted

      ive had tingling none stop in all my limbs for 34 months mine came on overnight im yet to find anything that helps its a nightmare

    • pippa58442
      pippa58442 Dingle_dell

      Posted

      I wouldn't worry; try to stay calm. Worry solves nothing and only makes you feel ill. Try a hot water bottle at night since heat helps you. I get numbness, tingling and pain at night; this seems to be the point when it flares up the most. I don't worry because I know it is neuropathy caused by injuries; my doctor confirmed it. I am used to the symptoms because they have gone on for years, but I also know that I have good days and bad days with it, I know I will be free of it during the summer when I am Italy and enjoying hot weather and I can also treat it in the UK with hot showers, the natural heat of my flat and when I am having a cup of tea, I put the hot cup on the affected areas. Knowing that I have found a treatment that works, reassures me.

  • Dingle_dell
    Dingle_dell

    Posted

    hi dawn you are the first person ive heard that has it all over the body. how did you get a diagnosis . my doctor said I had it in my feet , when I told him year later it was creeping into my shoulders upper arms and inside my chest he didnt take any notice just suggested b12 blood test. no treatment apart from ibruphen., which doesnt do much. I just want answers but its a help to talk to other sufferers. I am fit and well apart from this and apart from fatigue Im not letting it affect my daily life. just rest when I need too.

  • dawn68509
    dawn68509 Dingle_dell

    Posted

    there are many the same on groups for small fibre neuropathy ,with it over the entire body ,mine never stops 24 hours a day its toes to pelvis fingers to shoulders ,its driven me insane ,have u not had mris of the brain and spine ,nerve study emg ,these are the tests used to diagnose it ,im fully fit always have been i just have none stop tingling im 43 and was fine till i woke up like this no cause has been found its idiopathic

    • Dingle_dell
      Dingle_dell dawn68509

      Posted

      hi dawn so sorry to hear that , it must be awful to have it constantly. sounds like you had tests. my doctor just said to take ibrufen and that many of his patients get the same thing and doesnt know what causes it. he is a very kind doctor but keeps sending me for blood tests. i really dont know what to do. maybe go private if not too expensive. feet tingling like made tonight quite painful. but off the cinema to see the film Judy . kathy

    • dawn68509
      dawn68509 Dingle_dell

      Posted

      if its coming and going its a good sign ,how old are you ,and nerve studies shud be dun on the nhs straight away for tingling i had one 4 weeks after onset ive had 4 within 2 years every thing is normal as nerve studies test long fibres the only test for small is biopsy so when all tests are normal your diagnosed with small fibre ,look up small fibre neuropathy if you need more advice you can inbox me on here

  • deborah301080
    deborah301080 Dingle_dell

    Posted

    does the numbness effect you lips aswell please I have numb tingling lips only on my left side no one will tell me what it is no diagnosis at all 7 years had this

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