Hello fellow PV sufferers! I have been diagnosed with PV two years ago. Although I haven't felt well for several years. I like many of us find the fatique so debilitating and also have recently stopped taking HU as the side effects made me feel terrible! i have felt so go, but today started Pegasys and although been and felt so sick feeling better now.
I gave up my job in 2007, I worked part time but I also have Complex Regional Pain Syndrome, My left leg is totally knackered after 7 DVTs and 1 PE that gave me pneumonia and pleurisy. i was hospitalised for 5 weeks. I kept getting cellulitis and leg ulcers. I worked as a medical sectretary in a GP surgery, Using the foot pedal to work the dictaphone caused excruciating pain, I couldn't sleep due to the pain, I was a mess! I applied for NHS pension early through ill health and eventually was awarded tier 2. I also claim some benefits. I definately am no scrounger, I have worked all my life and now I have 2 chronic progressive illnesses so have to rely on benefits!. I am in severe pain in my legs my veins are totally knackered and I have very poor blood flow in my leg due to the DVT damage. It's swells up and although I manage to get around. I take regular strong medication and a cocktail of other drugs that do help.
PV added in with the CRPS one thing aggravates the other. I try to potter in the house, but need a nap after lunch. I find sleeping at night a problem due to bone pain, but it is improving!
I recently attended an MPN Conference in Bath and found it helpful. It was nice to meet other PV patients and chat and compare notes. I have started Pegasys today and have felt and been sick but feeling much better now! My photo is a bit grim but it is of my leg ulcer and is really improving now!