Thank you being here! I was diagnosed in February with ET/ Jak 2+ after having a mild heart attack in Nov 2017. I have been on Hydrea since February and my numbers are now in normal range; started @ near 1 million. I will be 60 in December. I have been experiencing foot and calf cramps. Last night woke me up 5 times and so have to get out of bed and put pressure on the foot to release. I have been drinking lots of water. Has anyone else with ET experienced this or is it just getting older thing?
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mbr8076
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I get the darn things too and wish I had a remedy! Also ET-JAK2+ and had a mild heart attack about 16 months ago, 59.... Although I try, I have noticed that I don't drink as MUCH water as I used to normally. I know that either the Anagrylide or Hydroxyurea or the combo kills my appetite, so maybe it makes me less thirsty as well?
Oh how I wish i ate less. Bad spells of ET mean I don’t exercise, eat the nearest and easiest thing (carb or fat loaded. ) gain weight and then depressed because of it.
Thank you. I also noticed sometimes if I wake in the middle of the night I have cotton mouth. Perhaps as you said I may not drink enough. I have been more aware of my drinking habits and have not had cramps.
I’m 64 and I suffered severe pain in right foot and very tight calf muscles from around 2015. Many consultations produced no real diagnosis beyond inflammation of a nerve in the foot and I was told to rely on non-steroidal anti-inflammatory pain-killers.
The foot and calf-muscle problem mysteriously faded away after a course of treatment with an osteopath whom I had consulted in late 2017 on something entirely different: a bout of lower back pain. The only explanation he could suggest was to show me a ‘dermatome map’ of the body’s network of nerve-links. Quite amazing to study the links. It might be worth getting professional advice from osteopath or equivalent re exercises to combat the calf & foot cramps. Best wishes, Peter
I’d suggest stretching pre bed time, especially the one where u kneel on your toes and lean back, there bye stretching the tendon that runs length of the sole of foot.
Also make sure having enough salt (if drinking a lot)
And most batty suggestion, wear bed socks if feet get cold at night! Difficult to imagine in this weather but does improve circulation when weather colder.
I also have recently started getting cramps in my left foot and calf muscle, not very nice in the middle of the night, at one stage I had to press down onto my big toe with my right foot as it was bent towards me and it was the only way I could push back to the floor, then stood on tip toe to try to ease out the rest of the foot, this is all happening on the leg where I had a total knee replacement, so could be a bit of nerve damage going on there. I have been on Hydroxy for over five years now so do not think it is that, I find drinking tonic water helps for some reason, I also drink well over 2ltrs of water a day more in this hot weather, also eat foods that contain natural potassium e.g bannans, almonds, nectarines, any yellow fruits, as when drinking so much water you just pee and sweat it out🤪 and this mineral is very important for us to retain in our bodies.
Sorry cannot help much more, but know how frustrating it can be especially in the middle of the night,
No leg crumps.....but lower back pain from time to time. I am on pegasys ( having my third injection today) it might be side affect who knows? Paracetamol does help for me.
And magnesium is a good idea but consult with your doc first.
I have had muscle pain and at my last consultation they said I was low on phosphates and I took a phosphate suppliment for a week which was a disolveable tablet tasting like an electrolite drink. That week I felt great. I cycle to work and was told that low phosphates are associated with muscle wastage hence the muscle pain. Maybe worth asking your consultant.
Yes I have had that sudden wake up at night with leg cramp fortunately only on an odd occasion - very unpleasant and painful - I do find good hydration all day helps always water bottle with me. And like others magnesium is supposed to help those that regularly have the problem.
My wife, who was admitted to hospital through a&e on Wednesday had terrible restless leg syndrome for two days prior to her collapse. Once she had three pints of blood her RLS disappeared. So it maybe something to do with her low hemoglobin, which was down to 56, normal levels 115-165 g/L
Yep! I experience foot and calf cramps and did before being digagnosed. Can come on at anytime, including during the night. Happens a lot in cold areas or weather. Can be embrassing when your out and least expect it ha ha! X
I have also tried BDH Cannabis oil (the legal kind), rubbed into calf, but really no difference. I saw one website recommends that just before you go to bed, stretch out the calves by leaning facing a wall with one foot further back and stretch the back foot up and down. Hope that makes sense, but does seem to help
When I posted about leg cramps I got all sorts of weird and wonderful suggestions including taking a spoonful of yellow mustard, drinking 2-3 ozs of dill pickle juice and others that I can’t quite remember. I have started drinking 150ml can of tonic water every other day. It seems to have helped if not quite completely. It is because it the quinine in it apparently although many folk reported being told by their doctors that they would have to drink gallons of the stuff to make a difference! Quinine as such is actually not licensed as a treatment. My haematologist warned me that quinine could lower my platelet count which for me is a factor as they are sitting between 30-40 at the moment!
For me cramps are a listed side effect of one of the drugs I take so I guess I’m stuck with them. At least I found that tonic water has helped whether real or psychologically- who cares?!!
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