Winter tips for familial amyloid polyneuropathy caregivers

This season's brutal cold can mean pain from heavy or course clothing

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by Ezekiel Lim |

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Starting in late November and often lasting through March, the cold weather in much of the U.S. can be a burden for many patients with familial amyloid polyneuropathy (FAP). Those living on the East Coast or in the Midwest often face especially brutal winters. My mother-in-law’s FAP symptoms require that she stay indoors as much as possible during this season.

A few of her uncles were diagnosed with peripheral neuropathy when they were older, and some found it especially difficult to touch coarse surfaces with their extremities. Even putting on new socks required the help of a caregiver because the action caused extreme pain. That side of the family primarily lived in western Pennsylvania and Ohio, where the winters were especially cold and demanded attention, even inside the house.

Extreme cold requires certain articles of clothing, such as gloves, to stay especially warm for those with aHUS. Most of the time, the weather demands patients wear heavy, knitted socks, as well. They’re easy to find, but require a great deal of care when putting them on a patient’s foot without triggering pain because of peripheral neuropathy symptoms.

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Heavy jackets, winter hats, and scarves are a regular part of the winter wardrobe, too, but their weight and coarseness can cause a great deal of discomfort for someone suffering from neuropathy pain. Caregivers should be mindful of which articles of clothing cause their patients discomfort. I’ve found that it’s best to keep a patient indoors during the winter months as much as possible.

To keep neuropathy pain at bay indoors, caregivers can help patients stay mobile, as better blood circulation often reduces the numbness and tingling. That’s what happens for my mother-in-law: When she’s indoors during the winter months, she tries not to remain sedentary in her wheelchair too long.

Topical ointments such as Tiger Balm and capsaicin cream can help soothe irritated feet. We’ve also found benefits in a roller for foot massages.

Caregivers must always be mindful of their patients’ seasonal comfort level, both inside and outdoors. Newer caregivers might find it helpful to understand patients’ tendencies and what they respond to best. The most important thing is to help them feel as comfortable as possible while maintaining a sense of their self-worth.

Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.


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