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Profile picture for gajokos @gajokos

Thank you (Jean) m@nohrt4me for mentioning your experience with erytrhomelalgia. I am sorry to hear about your flare-ups. Cool compresses do help. Overall, luckily the inflammation is now minimal for me --except when I go for long rides on my motorcycle and my feet get constricted far too long in my leather boots. Baths are great. I also practice inverted yoga poses a couple of times each day and found that keeping my feet out of the covers at night keeps them cool.
At the risk of sounding somewhat cynical, sometimes I wonder if erytrhomelalgia too disappears for all the folks here who make it sound like HU is some heaven-sent mana that eradicates all symptoms of their blood cancer. Yes, I understand, for many of us HU is still better than risking a stroke, but for now at least I'll opt to stay away from it.

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Replies to "Thank you (Jean) m@nohrt4me for mentioning your experience with erytrhomelalgia. I am sorry to hear about..."

@gajokos Erythromelalgia has been less severe since I started HU, but it might not shake out that way for others, and I don't want to fight about it. I wish that MPN patients were not so polarized about it. We're all doing our best dealing with an ailment that is poorly understood and inadequately explained.

I appreciate the tip about inverted yoga poses! I do daily yoga and qigong (old lady version!) for my scoliosis and will add a legs-up position to see if that helps. I am going in for open heart surgery Thursday to fix a congenital heart valve problem, and hope I can get back to exercising asap. Even a week off and I start to get frozen up.