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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Muscles and Nerves

GVHD can also affect your neuromuscular structures. This causes nerve pain, muscle weakness, and cramping. Muscle cramping can also be caused by some of the medications used to treat GVHD. However, for reasons that are not fully understood, muscle cramping can persist years after GVHD has resolved and can also occur in individuals who have never experienced GVHD.

My muscle cramping is so bad that I sometimes wake up crying out in pain. Even simple things, like holding a pen, are now difficult.

I have neuropathy in my lower legs and feet. It feels like my legs are going to sleep. My balance is affected, and I use crutches to walk far. Foot and calf massages help alleviate the symptoms of peripheral neuropathy.

For the first five years after the transplant, I used to have muscle cramps every night that required me to get up out of bed several times to walk it out. But that has now resolved, and I can no longer remember when I last had a muscle cramp.

Muscle cramping post transplant usually does not resolve with typical muscle relaxants and pain medications. Tonic water, which contains quinine, can sometimes provide relief as can certain prescription drugs that can be used alone or in combination with quinine. Talk to your doctor about possible treatments. Specific guidelines for treatment can also be obtained from larger transplant centers with departments dedicated to long-term care post transplant.

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