I feel very much like I traded one hell for another. In place of a constantly red and inflamed neck (prior to TSW) I now deal with alternating periods in which my skin is calm and smooth followed by periods of an intensely raw and itchy sensation. During the bad periods, the eczema is localized in the entire region above my chest and along my entire arm. My eyelids are dry and itchy, my cheeks and forehead display a reddish blush, and the skin around my shoulders peel like grated chocolate curls. I call this a new hell because while my neck is noticeably less red than it has been in the past, the fact that topical steroid withdrawal (TSW) induced eczema on my shoulders make it physically painful to move, wear backpacks or bras due to the rawness and sensitivity. Most fabrics now irritate my skin making it impossible to wear many of my clothes. When the eczema was just on my neck, I didn’t have to worry about these things because it was literally bathed in air. The worse part of TSW is the pain. I can’t describe it perfectly but its almost an intense itchy sensation. You want to scratch it but you know that if you do, the skin becomes more sensitive. When I fight the urge to scratch, it feels like ants are crawling up my skin. I’m not sure if I should call this burning. It’s a lot more intense and painful than what I dealt with prior to TSW. This burning sensation is constant, so for the whole day I feel pretty much like I’m in pain. Sometimes I get so sick of it that I wish I was never born. Despite this, when the good period comes its absolutely rewarding! For anyone deciding TSW, just please make sure that you prepare yourself mentally and emotionally because it literally is like a roller coaster.
After 5 days of normal skin, the dreaded redness on my neck and hands has returned. I’ve been having this horrible urge to scratch my neck and hands the entire the day. This sensation of itchiness feels different. It almost like a burning itch instead of a dry itch. My neck feels both red and raw. I had always expected the redness and eczema to return because I know from reading others people’s blogs on red skin syndrome that it can often involve an initial period of worsening eczema followed by alternating periods of calm and less severe eczema flare-ups.
Sometimes I sit there and wonder whether if I will ever reach a point where I won’t have to deal with eczema on my neck anymore. I want to say its a tough life, but I know I have no right to complain given how there are worse things that could have been given to me. Hopefully, other people are showing good signs with topical steroid withdrawal as well.
Strangely, the redness on my hands and wrists have disappeared during these last 5 days. I did feel that today, it seems to be on the verge of coming back. I find it so amazing that my neck has calmed down so much. If improvements continue, then no doubt, red skin syndrome was the culprit all along.