ET symptoms/leg cramps night

Any one have night cramps in legs, I have these for years and years, knock me right out of bed, but seem to be worse now, had two test which showed nothing, just had a sonogram on the left leg, nothing, past couple of weeks its every hour and switching legs. Got any suggestions, anybody else have this? is it ET or just plain old poor circulation! Think I will ask Dr for a Doppler. byw I have had these for years they come and go but with this ET scary stuff. Thanks all, Mickey

15 Replies

  • Hi Mickey,

    Yes, I too get those twitchy, jumpy , crampy legs, and I have ET as well. I find that drinking tonic water before going to bed stops it completely, apparently because of the quinine it contains. Give it a go. Good luck. Alan.

  • Ohhhhh I like this remedy. I'm going to add a slugg of gin to mine tho....good nights sleep guaranteed then!! Poll x

  • Hi Mickey I have been having pains in my legs for a couple of weeks they feel like they are tightening and it hurts to stank on them by the late afternoon. I am new to all of this I have been seeing a chemo/hemo Dr. At the cancer center in mount airy for a year. He watched it for a year and was taking 81 aspirin. He started me on hydro 2 days ago. I sleep for 12 hours last night . Yeah but my legs still hurt . Any ideas Anne

  • Hi Anne, I'm new to this myself, just started taking the meds this week. What dose are you taking? You live close to me, I live in PerryHall, MD. How high were your platelets??. OK I always got severe leg cramps sometime knock me out of bed in the middle of the night. I take the meds in the evening and I drink 32 ounces of water between the time I take it and go to bed. For some reason all the water has really seem to help with the leg cramps. I also leave a glass of ginger ale to sip on when I wake up during the night. I also when I wake up drink 8 ounces of water first thing. Now I am a coffee lover so that might help with the fatigue. So far I sleep yes, but its not overwhelming yet. I do get fatigue but try to switch my mind to something else or walk it off to try to fight it.

    This is a wonderful forum full of wonderful supportive people. Are you on facebook, there facebook site that is helpful also.

  • Hi Mickey, I to have ET and get cramp in my legs, in fact they can happen any time of day, so I drink tonic water works a treat.

    As Alan said give it a go😃


  • Hi Mickey I too have ET and get horrendous leg cramps at night. Tonic water didn't work for me. I have to take quinine sulphate, prescribed by my GP. It works most of the time but as soon as I miss one the cramps are back with a vengeance.


  • Hi I've just been diagnosed with ET and Jak2 after several years of experiencing all sorts of symptoms including twitchy legs, cramp and painful feet especially at night. I've been seeing a podiatrist for two years who made me orthotics and have had to buy special shoes. It's hard to believe that all that time, money and NHS treatment was probably unnecessary as since my diagnoses and going on Hydroxycarbamide my pain has almost gone. There definitely needs to be more awareness in the medical profession of the symptoms of MPN's.

  • I was recommended to drink soda water for the quinine. It helped a bit but not too keen on Soda water!!

  • Sorry, that s tonic water. Maybe it's better with gin in it.?!!

  • I have ET and bad leg cramps - usually at night - but can happen in day. Lately, been taking magnesium, which has definitely helped. There is a thought that bananas can cause it, but also some believe that bananas can prevent it, so worth seeing what you have been eating previously to see if anything is actually setting it off. Worth checking out magnesium, maybe? Best wishes, Tinkerbell13

  • Hi. Tinkerbell. Think I met you at the Colchester forum last year.

    I have looked up magnesium and foods on the net and bananas are mentioned. Also dark chocolate!

    I too suffer from restless legs, cramps , especially in the toes and hardening up of calf muscles. A good exercise is to stand on the bottom step of the stairs with the heels of the feet overhanging and stretch out those calf muscles.

    I, too, have E.T. Jak neg and was diagnosed over 10 years ago.

  • Many thanks for your reply - clever of you to remember Colchester, it was a good and helpful Forum and delightful people, I remember!....yes, dark chocolate good too. Keep wondering if anyone has painful fingers and hands as well, mine keep me awake, usually one or two fingers, occasionally going to whole hand. But it is predominantly leg cramps which affect people. My mother had PV and had the most terrible cramps, I recall now. Best regards, Tinkerbell13

  • I suffered from restless legs in bed, then I discovered Magnesium. Fantastic mineral. I recently ran out and the twitchy legs started again. Please look it up on internet. So many people suffer from a shortage of this mineral with many symptoms associated with shortage. There are many forms of magnesium so you need to research which is best. I use magnesium citrate .

    As with all supplements PLEASE check with your healhcare provider.

    Hope this helps.

    Regards Sandy.

  • Hi Mickey. I too had leg cramps and occasionally whole body cramps. I was advised by another patient to try Magnesium Citrate and I am much more comfortable now. Hope you find something that helps you.


  • You might try acupuncture, if you can find a good practitioner.

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