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Got PV, new symptoms

Posted , 5 users are following.

Orseblue
Orseblue

Hello all, I was dignosed with PV early last year.

Got all the normal symptoms, night swets, lg spleen, on warafin, itchy skin (under R foot), flushed face, etc.

I'm still working full time, today I went to work in 5cm shoe heels, my R big toe and bone under foot is hurting so much now, I have found same thing been happening from just normal walking in the bush with good shoes.

I wear "health" shoes most times.

Does anyone get " inflamed or whatever it is" foot part?

I thought it was gout?

Every time I get up from sitting all my bones in my feet are very painful.

Hoping I dont have bone cancer as well, will see my hematologist on the 31 May.

0 likes, 6 replies

6 Replies

  • monneywese
    monneywese Orseblue

    Posted

    Hi -  I have PV and the symptoms you describe with feet.  At times it is so painful I can hardly walk.  My Dr. says it is erythromelalagia.  Impossible word to spell!  But there it is.  It is a complication of PV.  I don't take hydroxyurea, but I read that it may help - I would ask about it at your next appointment.  Good luck!
  • bernard42121
    bernard42121 Orseblue

    Posted

    I have been getting painful and swollen big toes, which I thought was gout but is obviously yet another side effect of the condition.
  • Orseblue
    Orseblue

    Posted

    Thanks for the responses, I will be put on the hydroxyurea.

    It helps to hear others talk about what they go through.

  • clem19079
    clem19079 Orseblue

    Posted

    Asked to be tested for gout. I get checked from time to time. Gout is a symptom of the disease. Maybe getting your feet measured will get u proper fitting foot wear. All da best
  • peter98873
    peter98873 Orseblue

    Posted

    Sorry you have been afflicted with foot pain.  I have encountered this during the past 3 or 4 years.  Excrutiatingly painful.  You seem to be on the right track with your footwear.  I have worn a medical shoe for a year or more now.  I still suffer night foot pain which eases during the daytime.  Exercise can aggravate it.  You should consider referral to a vascular clinic to test your circulation and to clear any thoughts of diabetes which can easily be mis-diagnosed as the symtoms are similar.  Keep a check for any foot ulcers that may present themselves.  They are treatable but can take a long time to heal whilst also very painful.  These can be caused by unusual pressure on the feet and if caught earlly can be contained.  I have been through the whole mill and can understand just what you are going through.  Not very pleasant I assure you, so do take care.  I was diagnosed with hereditary gout long before the diagnosis for PV.  This may affect some people but mine is very much controlled with medication.  The symptoms are again similar but caused by uric acid levels in the blood.  A simple blood test can deal with this.
    • clem19079
      clem19079 peter98873

      Posted

      I suffer the same foot pain, it's also in my hands and I have also had it on my face. It's like walking on broken glass at times. It's just another symptom of pv or prv. I take gabapenton and maxitram. The drugs don't ease it 100% but it's a long way from where it was. I know what your going through, I used to be crippled with it . All the best.
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