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Advice on getting some sleep when sweat is your main trigger?

It’s been 2 years now since this cycle of flare ups started for me. It started after I started to go to the gym more often and it only started as small patch near my armpit. I remember the irritation being so bad that I was running/holding my face to stop scratching my arm but that led to my face and eyes flaring up and becoming another main spot for my dermatitis. For almost the entire first year i tried all the home remedies I could to help it but I was making it worse by going into a scratching frenzy as soon as I fell asleep every night. That’s the cycle I’m stuck in, it slowly getting better for me to get a couple hours of sleep to be woken up covered in blood. When I first saw the nurse she told me it looked like dermatitis to her and gave me a steroid cream to use. I used it until I was clear for all to flare up again, seeing the same nurse she said she would refer me to dermatology. After months of waiting I got no appointment and the dermatitis has spread to my arms, hands, legs, neck and ears. It’s got so bad and painful from me falling asleep scratching that I had to go to A&E, where they also said it looked like it was AD but id need a diagnosis from dermatology. They also gave me a stronger steroid cream which worked again but flared up after I got a little bit of sleep, got sweaty and scratched. Any good advice on this from anyone. Maybe you’ve experienced the same?


Community Answers
  • Linette Roungchun
    2 months ago

    Hi @jasondugal96 I’m sorry that you’re experiencing this! It’s frustrating because you’re trying to do something GOOD for your body by freakin’ exercising!! Come on eczema, give him a break!

    I totally understand because having eczema and TSW most of my life, my own sweat makes me itch too. It’s not as bad now as it was years ago, but it still bothers me and I need to immediately cool down as soon as I get sweaty.

    Have you looked into Topical Steroid Addiction? There are support groups on Facebook and a huge community of us on Instagram.

    So there are some people who can use topical steroids with no side effects nor withdrawal. But then there are some of us whose skin gets addicted to the steroids, and the steroid no longer works so we need to use stronger and stronger steroids. We then have to stop using them altogether because they are just making us worse- and then we go through Topical Steroid Withdrawal.

    When I was 3 years old, I stepped on a hot iron and then a patch of eczema appeared on my leg. I was taken to the doctor and prescribed TS. My parents applied it, the patch went away, and then since they stopped using the TS, the eczema came back with a vengeance and actually ended up spreading to more areas of my body.

    Long story short is that I am one of those people who have an adverse reaction to topical steroids. It sounds like you are in the same boat too, unfortunately.

    If you would like to watch some youtube videos on this condition, I have some right here for you! Dr. Rapaport is the doctor who coined the term RSS(Red Skin Syndrome) and TSW(Topical Steroid Withdrawal). He explains the iatrogenic condition here. I’m also including a documentary called Preventable that addresses TSW as well. Oh and please visit ITSAN.org. Kelly Barta is the President of the International Topical Steroid Addiction Network- she is a wonderful woman who actually has gone through and is still dealing with symptoms of TSW.

    Though I speak with confidence about TSW and from an entire lifetime of experience, I’ll be honest and say that I hope I am wrong in your case, because TSW is a rough road. But the good news is that I’m here for you to reach out whenever! And that though there is no cure for TSW at the moment, there are some treatments available that ease the symptoms of TSW.

    Find me on Instagram @linettero and I will connect you with all of our fellow TSW warriors. I am one of them but so far have gotten through the worst bit of TSW. Still going through it, but I’m alive 🙂

    Here is the video of Dr. Rapaport explaining RSS(Red Skin Syndrome), TSA(Topical Steroid Addiction), and TSW(Topical Steroid Withdrawal).

    https://youtu.be/0JNVj6eAHDs

    Preventable documentary by Briana Banos (Briana is also going through TSW)

    https://youtu.be/RMbtf3C8BZk

    And for the meantime- ice packs. Ice packs help calm that insane itch right down. Keep them by your bed!! And take them with you whenever you know you’re going to be outdoors or in a hot place! I also have a portable fan (about $30) that I can add chilled water to cool down the air or freeze a part of the fan so that it cools nicely. But if you have AC, then even better!! 😀 Good luck! And again please feel free to reach out 🙂

    Wishing you less itchy days,
    -Linette (Atopic Dermatitis Site Moderator)

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