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Do you have ET and siginificant bone pain? My lower back, legs & feet seem the worse

Hi All, Hope you are well! I have ET have had for 5 years, I suffer along with the other dibilitating side effects (severe fatigue, itch, headaches, dizziness etc) very significant bone pain, the worse pain seems to be in my lower back and legs but has now travelled to my feet and sometimes my hands, I wake up in the morning with general all over swelling, most noticable on my hands? again is this strange? I am interested to know if any of my fellow sufferers experiance the same/similar pain and if so 'how do you treat it'? I am currently taking a mixture of 30/500 co-codamol on not so bad days and anything from 10 to 100mg of zomorph for more severe days. Any comments most welcome. Good luck to you all out there. Best Wishes Rinty.

3 Replies

Hi Rinty, I have PV, not ET but seem to suffer from pain due to osteoarthritis, inflammation of soft tissue, nerve compression. I don't seem to swell up all over but certainly certain joints, i.e. thumb at moment will swell as the pain increases. I have co-codamol too but I am at the stage it doesn't seem to do much for the pain. I find fast acting panadol seems to agree with my body and stomach better! Sorry I am not much help but wish you well. You at least know you are not alone. Take care Aime x


Thank you so much for your reply, yes I also find the pain relief not very helpful, I do find the pain so incredibly painful I do not know what to do with myself, I am 40 years old and not sure if the arthritis might be the actual problem, I had another bone marrow biopsy and am currently awaiting the results, I am concerned it could be progression ! However I am also comforted by my amazing Heam that this is probably 'not' the case. Best Wishes to you also xx


i am on hydroxycarbamide i have also suffering severe fatigue also suffer chronic back pain on co codamol 8/500mg and also fentynal patches 100mg the fatigue is that bad i have to sleep for 2 hours every afternoon suffer night sweats and also really itchy hands but only during the night i go to hospital every 3 month come next year it will be 20 years since being diagnosed


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