Having been diagnosed with MF in 2011 at the age of 60 (actually on my birthday) I have been on Hydroxy and asprin ever since. My health does seem fine but fatigue sets in in quiet easily no matter what I am doing.
I have suffered with cramp from time to time in my wrists and feet but last night....
Anyway last night I suffered severe cramps in my lower legs which locked my ankles firmly and the pain was excruciating I couldn't move with the fear of falling over, this lasted for about 4/5 minutes then it subsided. It returned another three times exactly the same and then throughout the night with decreasing severity.
Does any one else out there have any symptoms like this.
Should I treat this as a separate issue and go to my GP or wait for for my next haematology appointment in a month?
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dave117
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Hi Dave I don't know if it will really help I do get leg cramps and have my ankles lock but have been getting this before I was diagnosed with JAK2 Pos ET, and I find that I have to wait it out or if I can walk then standing on a cold surface helps. I was only diagnosed this year and had the cramps for a couple of years.
Hi Dave117 - I have MF - as everyone and his dog probably knows by now - I get night cramps regularly mainly lower limbs and it bxxxxy 'urts like crazy for a few mins then as you say subsides. some nights I don't get it others I have several episodes. . I think mine is directly linked to my MF but don't know just why it occurs. I get my wife to rub it vigorously so tend to get many more episodes than I actually have. . And Im the only guy to have cramp in my back, well you need some fringe benefits. . Joking apart I think it might be worth asking your GP but I don't know they might prescribe to prevent it. .
This had made me think as I usually drink gallons of water everyday - must be the Hydroxy - but this particular day I had only had a couple of glasses and may be that is it. I need to make sure I have the water intake kept up and we'll see how it goes.
Thanks so much it is easy to forget sometimes when your busy!!
Hi . I have posted before on this one....I had restless legs in bed disturbing my sleep and very uncomfortable , then I read an article on Magnesium , so many of us are short of this very important mineral ...which then has lots of effects on the body , Since taking the Magnesium my restless leg problem has all but disappeared . my partner is now taking it for his cramp pain . Do use your search engine to look it up , it's well worth the time. Also check with your pharmacist or GP to make sure they don't have a problem with you taking it. All the best Sandy.
Hi, i use to get leg cramps and restless legs too every night/day. I was advised that complex Magnesium will help. So now I am taking it and is working well for me. This may help you too. I am patient with ET Jak 2+. Wishing you well.
I was recommended to have the glass of soda for the quinine by the lovely nurses on the MacMillan day bed unit I go to for bloods. It sparked a big conversation about what to have with the soda - and that would be a matter of choice - but it's the soda that's important! My! JediReject! you are a crafty old fox aren't you, my old friend!
I sure am Beetle my friend. . . I'm like a mischievious child, though as you will no doubt guess my lovely wife reads me like a book as she ain't daft by any means. . Hope you are doing well as things go. JR
I'm flying high at the moment! I had a red cell transfusion this week and my first grandchild arrived on the same day! what's NOT to feel good about?!. I have four sons and my grandchild is a little girl but alas they live in San Francisco so I probably wont get a cuddle until Christmas :-(. Thank goodness for Skype! How is the brasso working on your golden ticket? I am looking around at other trials but we have to move from our present address and will probably move south to be nearer family and old friends so can't commit to anything until I know where we'll end up! Take care
You have a very good memory Beetle. Firstly allow me to congratulate you on the birth of your lovely Grand-daughter, as you may be able to make out I am holding mine in my profile pic, she just turned one.
As you say Skype is fantastic to keep in touch esp where great distance is a factor. Im still buffing my ticket with vim and vigor and pressing on with Rux fttb. I hope you get a chance to trial but as you say better be settled first as it's not without disruption when you sign up for one. Great to hear from you my friend. JR
Apology to dave for hijacking a couple slots here.
I have suffered with cramps for a long time but after starting hydroxy 2.5 years ago they got so bad in my shins and thighs that it used to make me scream! My husband wanted to call an ambulance one night it was so bad that it frightened him. Anyway my GP prescribed quinine tablets and they did the trick, though when I stopped taking them the cramps started again so I had to start taking them again. I have just weaned myself off them again gradually and, fingers crossed, so far so good a week after I took the last one.
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