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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.

What Amyloidosis Symptoms Keep You Up At Night?

A MyAmyloidosisTeam Member asked a question 💭
San Francisco, CA
December 19, 2023
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A MyAmyloidosisTeam Member

My feet and hands keep me up at night--neuropathy. Hellish pain.

December 19, 2023
A MyAmyloidosisTeam Member

I see all these really painful neuropathy responses and I can’t get over how positive you each remain. It’s really helps the rest of us. I really wish you the best.

February 2
A MyAmyloidosisTeam Member

Three things have helped me with severe cramping. 1) I have used Quinnine Sulfate as needed for years for leg/arm spasms. It is very strong and not something to take on a regular basis, just when cramps are debilitatingly horrible. They come in capsule form, and when spasms are really bad, I break one and leave it under my tongue as it is absorbed quicker. I have not had to use them much since solution three (listed further down.) 2) I found a way to keep heavy blankets lifted off my legs while I sleep. My room is kept cold, so I have needed 3 down blankets (2 summer, 1 winter) to stay warm with a thick bead spread over that. I stayed warm, but the weight had my legs in constant spasms... (just awful!) So, I found a hospital bed tray that fits my queen size bed on Amazon. I use it at the foot of my bed with 2 of the 4 blankets draped on it and this has helped immensely!! 3) A medication recently prescribed medication from my neurologist has really been a game changer for me! It eliminates most muscle stiffness and just about all of the cramping I've experienced. It is Mexilentine HCI and is non-narcotic. I take one in the morning, and one in the evening, and has been incredibly beneficial is stopping cramps and stiffness throughout the day and night. It is a relief not to have to worry about when my next severe cramping will be, or whether or not I will have Quinnine on hand.

January 4
A MyAmyloidosisTeam Member

Noticed many responses with neuropathy as the culprit for sleep deprivation. Same here, along with severe muscle cramping. Neither gabalin/pregablin or cyclobenzarine helps either. Cortisone shots helped tremendously in my wrists but Dr warned that he will only do it 3x then surgery as the bones & tissue will begin to break down causing worse problems. If surgery occurs my oncologist insist they get biopsy samples as it is very valuable for analysis regarding impacts to the heart! Sympathies to all of my comrades & their loved ones as they continue to cope with their version of Amyloidosis.
Peace & Merry Christmas

December 20, 2023
A MyAmyloidosisTeam Member

My husband was up constantly from carpal tunnel pain in his hands. He had surgery and it was an amazing outcome.
My thoughts keep me up at times - this is a very emotional disease and I have no doubt it weighs heavy on your mind and heart. Perhaps your doctor could recommend a sleep supplement to help you put your thoughts away to get rest. Please keep us updated on what you try and how you make out.

December 19, 2023

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