skin irritation question

monaj 421

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I was diagnosed with ALS last month after months of trying to figure out what was wrong with me. I don't have my first ALS clinic until late March. I've been having lots of problems with itching. It seems like my clothes irritate my skin and the itching drives me nuts and, of course, I can't scratch it. Is this typical for ALS?
 

nona

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I don't know if it's typical for ALS but I have had the same problem for years. Cerave anti itch cream helps temporarily.
 

lgelb

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Welcome, Mona, while sorry that you find yourself here. The loss of mobility can affect natural oil distribution, circulation/hydration, etc. and putting pressure on some areas affects the skin, too. If your CALS can do some light massage, that could help. Over time, in some areas, you might need to dry up moisture using cornstarch powder; in others, moisture with a non-water-based cream or ointment is the key.

Best,
Laurie
 

Nikki J

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I also find exfoliating before moisturizing helps
 

affected

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I don't think it is related to mobility as this was a really early symptom for Chris, before mobility was at all compromised. I've also known a lot of PALS over the years that report odd itchy skin things from before or not long after first real ALS symptoms.
It seems really common. Definitely exfoliating, no soap, moisturising well and investigating fungal issues seem to help the most.
 

Trixie80

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i am always extremely itchy, ix years now. If you find anything that helps I would love to know. I have tried everything, cortezone cream, moisturizer, mild body wash, anti histamine, and nothing works
 

Jimi

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I'm paralyzed from the shoulders down. Living in my recliner. As I was getting used to not being able to itch myself, there were times it would drive me crazy! For me, a lot of the issues were in my imagination. The more I thought about not being able to itch, the more places I wanted to itch! Fast forward some time, and I am now able to distinguish between real itchiness and imagined. I don't have the facilities or manpower to be getting a real shower or bath. October '17 was my last running water shower! Oh those were the days. Sponge bathing is totally adequate. I only use Dr. Bronner’s - Pure-Castile Liquid Soap Citrus, including in my hair. I was getting flaky soap build up and itchiness with other soap, and even thought I had dandruff. Not a problem anymore. I don't use any lotion or powders. For me I think these things do more harm than good, clogging the pores. On occasion I will get a pimple and then will use peroxide to clean the area until it's gone. Good soap, minimal sweating, simple cotton clothing and a couple sponge baths a week seems to be OK. Plus I don't smell!
 

monaj 421

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Thank you for your responses. I am still working out what seems to work best. I have found that what helps is (1) cotton (clean) clothing, and the less the better, (2) lack of seams, creases, elastic bands, etc helps. We have used Cortisone, Benadryl and zinc oxide creams which all seem to help temporarily but in my case it appears that sweating (or elevated skin temp) and clothes impingement appear to be the cause. By minimizing these aspects it helps me to reduce the overall itching and redness on the skin.
 

Tkthiede

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I’ve had different issues with itching Some is from dry skin but I am one of those lucky people who gets fungal infections from the Radicava. I had to go on a maintenance dose of an anti fungal. I seem to have things under control for this five minute period! 🤣
Tammy
 

nona

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For the above mentioned clothing, I have found eBay to be a great source for Fresh Produce dresses. Commando is key!
 
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