Hi @sandrine, I’ve not been on this forum for long, although I was diagnosed with Polycythaemia vera (PV) in 2018. I’m in my late 60s now and take Hydroxycarbamide on a daily basis which has stabilised my blood counts at a normal level. Like you I experience bouts of fatigue from time to time although, being retired, I can’t put it down to stress! My medical team does say it’s just a consequence of the condition even though it is well controlled.
For me, I can often overcome it by taking exercise such as a walk or bike ride. If that isn’t possible I also find treating it as though it were low blood-sugar levels by eating something like chocolate or a piece of cake. Everyone is different, but this helps me.
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HI Jeremy
Thanks for your suggestions. I might try eating something sweet if I feel really drained. With
Christmas round the corner it shouldn’t be too difficult!!!
Things have been better lately. I find that I go through cycles of feeling fine and feeling exhausted. I’ve been on hydroxycarbamide for 10 years now and they have had to increase it bit by bit over the years. I think I’m getting close to the max dose now.
I’ve been told that as my PRV is under control there is no reason for me to feel tired and that it has nothing to do with PRV. I don’t believe this for a second as my blood results vary everytime I get my blood test results. Sometimes the platelets are good but my red cells are very low. Sometimes its the opposite. Sometimes everything is high. My body must have to continously adjust to the changes and that in itself must be tiring. The more I I read this forum and the more examples I find of people who have the same symptoms and who have been told by their medical teams that it’s part of the parcel. I’ve queried this again and asked why this seems to be brush under the carpet everytime I mention it but once again no answer to my last email for the past 3 weeks and I’m not holding my breath. At least finding answers on the forum has helped tremendously as I was started to think it was all in my head. Have a ni e Christmas and Happy New Year.
Sandrine
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sandrine Sorry to hear about the on going fatigue, hopefully the break over the holidays will help. Fatigue is hard to explain. I have several health conditions all which have fatigue as a symptom, I guess most things do. Has your thyroid been checked as an underactive one can cause fatigue. It is annoying and upsetting when the doctors dismiss what can have a real impact on your daily life. There is as far as I know nothing they can do for fatigue but a little understanding would go a long way. Definitely have some treats over the christmas. Best wishes. Liz59
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