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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I Have Read That Amyloidosis AL Affects The Nerves. Assuming That Is True How Does It Manifest Itself?

A MyAmyloidosisTeam Member asked a question 💭
Odenville, AL

I am attempting to understand the cause of severe pain in my thighs. Sometimes just one and sometimes both at the same time and sometimes along with calf and foot cramps.
The pain in the thigh is not a cramp. Just sudden and intense pain that is hard to control except by strong pain meds which I prefer not to take.
Always occurs when resting in a recliner.

May 20
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A MyAmyloidosisTeam Member

My husband has neuropathy in his feet, shins, and fingertips. He is bothered most at night when lying down, when his feet and legs become painful. He has found that gabapentin helps. You might ask your medical team whether that is something worth considering.

June 2
A MyAmyloidosisTeam Member

I'm curious how many of you, like me, are on blood thinners - and if my recent experience is worth considering. One night I was suddenly awakened with a painful foot cramp. The next day I experienced suspicious signs of a thrombosis in the top of the foot: pain, limping, swelling, heat, redness. It healed after three days. I assume it was a clot that dissolved, thanks to my anticoagulant therapy (Xarelto).

May 25
A MyAmyloidosisTeam Member

I get foot and ankle cramps at night. I’ve found Voltairin stops the cramp with in 10 minutes. The pain is brutal. My wife thinks it’s because I’m dehydrated, but with a diuretic, I pee constantly.

May 25
A MyAmyloidosisTeam Member

At the beginning of treatment my nerve pain was bad but now all I have is the neuropathy in my feet

May 21
A MyAmyloidosisTeam Member

Yup, that’s another thing he has. We didn’t think of that as nerve problems. Thank you!

May 20

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