Hi
New to this. Diagnosed 2015. Â Suffered for years with headaches told by doctor to drink more water. Lots of symptoms even a TIA in 2012, still missed the condition. Finally got diagnosed after chronic fatigue and bone pain threatened my job as community carer, found brilliant doctor who took action. Almost 10 months before I got to see haematologist. Taking 500 mg hydroxycarbamide each day and aspirin. Side effects, weight gain fatigue late in the afternoon, brittle hair although I am over 60, sweating headaches have gone though so that's good. Â Biggest struggle is work can't retire yet, and I have arthritis in my hip and neck, so pain levels can get high. Â Recommend trying mindfulness especially at night, don't sleep well. This condition has changed my life, I feel under threat all the time it's my monster under the bed. Â trying to make people understand how it makes is a challenge. Been trying to get manager to understand it but it took a letter from my doctor to get her to change my working hours so I do get exhausted. Hope my story helps others. You are not alone xxx
