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Severe burning in legs arms etc

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dianne31593
dianne31593

l have had polycythaemia for over 10 years. I have developed a severe burning feeling under my skin on legs arms and face. Nothing helps. Anyone else have this problem? If so any solutions thanks.

0 likes, 8 replies

8 Replies

  • frances20411
    frances20411 dianne31593

    Posted

    I would approach you condition from a different angle than medicine.  I had the

    same condition of burning/itching until I decided to TAKE CONTROL and I did

    this my changing my diet.  I eat NO red meats, or veggies that are full of Iron

    e.g. kale, spinach etc.  I ONLY drink water 50cc without exception and walk

    as much as possible.  I feel the only way will you bring your situation into control

    is by doing such...these  chages took me from almost severe poly v into livable

    day to day life.  I refunse to take oral meds for this disease since I did not like

    the side effects.  I hope that maybe these diet changes and life style will help.

    Good luck.

  • peter98873
    peter98873 dianne31593

    Posted

    Hello Diane.

    PV has affected me for many years and I cannot ever recall undergoing the symptoms you describe.  As you will know PV has a variety of ways of affecting people and in my case it was very severe foot pain which required some tough surgery to correct.  I learned a lot about how PV can affect people and I can only suggest that maybe you have a circulatory problem (not unusual) or maybe what you are suffering is treatment related.  I was prescribed Hydroxycarbamide for a long while in varying doses and this eventually caused me a wealth of difficulties and the drug was stopped.  Perhaps your haematologist can advise you better as they deal with  more cases of PV than any other doctor or individual.  Just maybe another patient has your predicament and will communicate with you.  Venesection has never been on my agenda.  Hope you get the answers you need.  Best wishes for the future.

    • dianne31593
      dianne31593 peter98873

      Posted

      Thanks. I am waiting for my haematologist to contact me for advice.
  • clem19079
    clem19079 dianne31593

    Posted

    Yea, I know all to we'll what's that's like. Gabapenton or lyrica help. For the flu like pains I take paracetamol and maxitram.
    • dianne31593
      dianne31593 clem19079

      Posted

      Thanx Clem do you get side effects with the drugs and do you know what causes this burning? Dianne
    • clem19079
      clem19079 dianne31593

      Posted

      Don't know cause of sensation, something that goes with this disease. Lyrica gave my involuntary movement in my hands and tingling in my lips. Gabapenton does same job only I have no side effects. Others are pain relief.
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