Doe anyone with Myelofibrosis suffer musscle spasm?

Posted by sharonm2024 @sharonm2024, Aug 24 12:17pm

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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gset | @gset | Aug 25 10:58am

Hi there, I have post ET MF and the muscle spasms are awful. I get them at night and cannot get out of the bed to stand the calf and leg is so tight. I have tried lots of things, eat bananas take magnesium supplements. The thing that helps when I get them is to have a bottle of the magnesium oil spray beside the bed as that seems to help release them. As a result of spasms I have had nerve pain in my feet from the tendinopathy I also get indirectly as a result. If you cannot get the magnesium oil there is also a gel which is good for the same thing..

hanya | @hanya | Aug 25 2:27pm

Hello friends! I have been on JAKAFI for longer than a year
I get terrible leg cramps during sleep ! Sometimes it hurts for several days! If I had to run ! I could not ! My hem/onc did not inform me that it could be from JAKAFI OR MF 🥵my husband is ordering me the oil from AMAZON NOW !! I will let you all know how it helps ! $20 for 12 once’s ! Good luck to all of you ! I empathize and truly hope that all of you continue to battle this awful illness! Anna

sme225 | @sme225 | Aug 25 5:30pm

I have myelofibrosis and have been on 10 mg Jakafi for several years. I have found that drinking
LiquidIV helps the night spasms
They are awful.

sharonm2024 | @sharonm2024 | Aug 26 5:55am

In reply to @gset "Hi there, I have post ET MF and the muscle spasms are awful. I get them..." + (show)

I will try the magnesium oil spray. Thanks

knissy | @knissy | Aug 27 10:34am

In reply to @sharonm2024 "I will try the magnesium oil spray. Thanks" + (show)

I get muscle cramps and use magnesium oil spray. It works for me.

sharonm2024 | @sharonm2024 | Aug 30 11:10am

In reply to @gset "Hi there, I have post ET MF and the muscle spasms are awful. I get them..." + (show)

What brand of Magnesium oil do you use?

gset | @gset | Aug 31 4:31am

It’s a spray or gel called BetterYou Magnesium Muscle Body Spray. I am in the UK so you may have different brands

sharonm2024 | @sharonm2024 | Aug 31 6:27am

Thanks and best to you and your fight with this disease.

nan77 | @nan77 | Sep 1 5:41pm

I have CMT, which is a rare neuropathy and affects my entire body, that was diagnosed in 2022. The muscle spasms have been so severe that I can't move or walk and sore for several days. I am on magnesium and muscle relaxers. Staying hydrated is supposed to also help. Doctor suggested drinking a bottle of Pedialite every day. I use a powder form of electrolytes in water that helps. These spasms come on so suddenly, day and night, that I knew I needed something that would help immediately. What has been working for me when I feel one coming on is pickle juice. I carry it with me everywhere and have by my bed It truly has been a blessing. It doesn't interfere with the meds and stops the spasms before it goes to the "I can't take it anymore stage." I hope this helps you as it has me. Prayers for you all.

joplin | @joplin | Sep 3 3:18am

In reply to @nan77 "I have CMT, which is a rare neuropathy and affects my entire body, that was diagnosed..." + (show)

Thank you for info re muscle spasms, you do get to stage where Can't take it anymore. have not found secret to stop it yet - but very debilitating

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