Hi All, I am 40 years old lady, working reduced hours (7 hour day)! now but use to be full time, I was diagnosed with ET 5 years ago with counts ranging from 900 to 1800, currently around 1300, fatigue & tiredness debilitating a lot of the time, but like most push myself to carry on as near normal, have 2 teenage children to contend with, which to us exhausting. I started hydroxycarbamide in November but only lasted about 6 weeks as had bad reaction & also the flu! Then tried Pegysy's interferon, did not agree with me either, am currently deciding on next treatment, but my question is........ Since starting & stopping therapies I have experienced almost total body pain in my bones!! I feel like I have been kicked by a horse, for one of a better term. When on treatment my doc recommended codeine 30/500 without any relief, I then progressed to slow release morphine capsules zomorph 20mg then 30mg then 40mg etc until finally being on 100 mg twice a day + oramorph every hour through the night as required! Extreme I know, but now I am not on therapies for this short period I am still in a considerable amount of bone pain, my feet, legs, lower back particularly bad, arms, fingers, head etc. I am trying my best to reduce the morphine as I am uncomfortable talking it, but the pain is still so severe. My Heam has said that this 'practically unheard of' in ET, I am very interested to know if any of my fellow sufferers out there have/ are experiencing the same? My Heam is wonderful and not disbelieving , is it just that no one else had shared this experience or am I simply EXTREMELY UNUSUAL ? Thanks guys and good luck to you all, it's tough, but that ever popular motto, there is ALWAYS someone worse off, makes me think xx
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