Day 41-64


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.


31 responses »

  1. Yes, the flares absolutely do get less intense! Mine were pretty bad up until month 5-6 or so. Meaning: I was/am still red and itchy but I don’t feel as shitty, I don’t look as red or dry or oozy, I hurt and itch less, I am less raw. And each month further out it keeps getting less painful and less aggravating. Right now (day 264!), nine times out of ten, it’s more annoying than anything else. I still get itch frenzies but it’s much less often and I can usually talk myself down, so to speak, and stop or at least lighten up on the scratching. TSW sucks and is so hard but I know it will be worth it for all of us TSWers. Hang in there!

      • Hi.. Would like to find out wht is topical steroid withdrawal. I ve contact dermatitis. It’s on my face n at times I do hv it on d neck. Had it for d last 2 yrs. I do apply steroid cream but not everyday for d last 2 yrs. it’s only when it’s unbearable I ll used it for 2-3 days. But my face never got really better.

  2. Hi, use epsom salt. It will lessen the redness. You’re in a situation where you have secondary bacteria infection so your skin is unstable. Email me if you want to know more.

      • Well, I don’t get TSW but I do I am allergic to certain drugs and sometimes even the doctor will pescribe the wrong drug to me and rash will appear. Besides puffy face, I will get raw redness on my neck and arms. So I know that kind of raw pain.

      • Vuvie, I was only commenting on the part where you said epsom salts will lessen redness. WIth TSW, you will be red until your skin decides to stop being red. There’s not too much you can do with that. However, I definitely agree that epsom salt baths help with pain.

  3. I feel you. I have eczema of all sorts on my palms, back of hand and all over my limbs and torso. I know how it’s like to have eczema and no one understands how painful and tiring it is to go through a day without collapsing.

    I finally broke down and cried 2 weeks ago because I’ve had it with the pain and itch. I can never sleep because of the pain and itch so much so I have to take sleeping pills.

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