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A MyMyelomaTeam Member asked a question 💭
Gilbertsville, KY

I didn't have neuropathy with the first treatment, however, after the SCT I came home with mild neuropathy in my feet & mouth(I know I'm weird right?). That was in July of 17. I was on maintenence chemo until January of this year. My neuropathy has progressively gotten worse. I just had a nerve conductivity test. Now its moderate to severe depending on where its at. My questions are - can neuropathy cause joints to stiffen? Cause a person not to be able to walk? What are things that help?

September 5, 2020
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A MyMyelomaTeam Member

Exercise and stretching are important to help with neuropathy💖 might need a PT consult to get started

September 5, 2020 (edited)
A MyMyelomaTeam Member

I also have neuropathy in my feet and mouth (also in my knees and legs). Maintenance Revlimid made it worse following transplant. It did cause my legs to stiffen and caused me to cut back on walking. I'm just hoping it will go away over time, and that I can stay off Revlimid. My understanding is that routine walking is helpful in keeping leg and foot pain under control, building up to longer distances over time. That's obviously easier said than done when neuropathy pain is significant.

September 5, 2020
A MyMyelomaTeam Member

A friend of mine told me to walk through my pain or I'd be bed ridden. I took his advice 3years ago and I'm still walking. When I get cramps or spasms I try to stand and walk. Little by little when I walk outside neuropathy hurts less and less, but I have to keep doing it. It works right now, for me. I had it so bad before, I wound up in hospital with ice packs on my legs once and I don't want to go back to that..Also foot massages are wonderful and helps, some how.
What ever works.

September 25, 2020
A MyMyelomaTeam Member

Jrwindmiller I'm so glad to know I'm not the only one that has it in their mouth! Everyone I tell that too finds it very unusual.

September 25, 2020
A MyMyelomaTeam Member

ReggieJones I couldn't take Cymbalta either. I'm glad you're paying attention to the side effects. Wish you good health!

September 25, 2020

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