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Does anyone with Myelofibrosis suffer musscle spasm?
At first I thought they were just cramps or what I call charlie horses. Then I was told they were muscle spasms. They happen at night in either leg. Many times only in my ankles other times in my calves and thighs. I have to get up and walk around until they go away, sometimes they are so painful I can't walk and break out in a sweat, nausea. Very disruptive of my sleep. I am on Jakifi 10mg 2Xs a day. My Doc. says to drink water melon juice or tonic water. I've tried both.
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I have been on Jakafi for 3+ years. The leg/feet cramps started about 10 months ago. I have tried the pickle juice and liquid in with no relief. I guess I will give the spray a try.
I did try the spray and it gradually took a layer of skin off my feet, so after about two months I discontinued the spray. I have to say the spray seemed to work, because I just had a few muscle spasms. I went several nights without any, and mild one when I did get them. But the skin peeling off my feet made me rethink the use. So now I am just taking magnesium tablets before I go to bed. Still getting some spasms but not as many when I started Jakafi. Last night I was woken 3 times with my left leg acting up, I have to get up and walk them off. The spasm usually start in my ankle then radiate up the leg. So not sure what to do anymore.
@hanya
Hi Anna
Just reading the latest today and came across your post. I’ve had 3 instances of muscle spasms in the last year. Horrible pain, in my feet/ankle area but thankfully they didn’t last long. I’m not on meds— might be the sMF. Wishing you the best.
Hi joplin,
I also had debilitating muscle spasms - especially at night which is caused by medication (Brukinsa) that I take for a rare form of blood cancer "WM" (Waldenstrom's macroglobulinemia). My oncologist recommended Magnesium capsules. I started with 200 mg before bedtime but eventually was recommended to take 800 mg each evening. The 800 mg dose has worked miraculously as I can finally sleep at night without my legs/ankles/feet muscles cramping and twisting. Magnesium has been a godsend.
Take care and stay strong against cancer!
@ranchgal4sure