Even though I’m now writing this blog as mainly a TSW blog (it started as an eczema blog, clearly, but eczema and TSW are very different in things like their care, affect on life, moisturizers needed, etc) I still sometimes had this horrible thought:
“What if I don’t really have TSW? What if I just haven’t found what I’m sensitive to, and will never find out, and am doomed to live with dry, painful, red, markedly imperfect eczema skin forever?”
It’s hard not to think that sometimes. Even with all the concrete evidence out there, the firsthand accounts and the marvelous stories of people healing, TSW is just so wacky that it’s easy to get a little crazy trying to wrap your head around it.
Then I think of all the things I tried that did not make any noticeable difference in my eczema. I think of the pictures online from other sufferers that look so much like me. I think of the ITSAN forum and how I nod in agreement and identify with so many posts there. I think about my history with steroid creams and things always coming back worse after the latest rounds this winter. I fit the description to a pretty good tee. I bring myself back to calm reality by thinking about Dr. Rapoport’s studies on TSW, all starting with eyelid dermatitis (which is, incidentally, where MY rashes also started as an adult and was the first place I ever used steroids). EVERY SINGLE PERSON in his study that stopped all steroids was eventually cured. That’s a 100% success rate. You cannot beat that. The only people that were not cured were….. the ones who kept using steroids.
So about 5 weeks ago, when I was less than a month into Topical Steroid Withdrawal, I wrote this post discussing all the symptoms and noting which ones I have. I’m no TSW marathoner in that I’ve only been at this for just over 2 months, but my answers to the symptom list have markedly changed. If I wasn’t convinced I have TSW from my answers to this list before – I am now.
(The following symptom list is courtesy of ITSAN.org). I am putting my responses to the answers in bold after they are listed.
Q: What are the most common symptoms of topical steroid withdrawal?
These symptoms occur after you stop using topical steroids. You may not experience all of these symptoms, although some people do. You may start experiencing some of these symptoms within days of stopping topical steroids; other symptoms may take longer to occur or may not occur at all. You may experience some of these symptoms throughout the entire time or you may only experience them during flares.
- Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads.
Guess what. I do now have the red skin that stops at the wrist. It is pretty faint, but I have it on both arms. You can clearly see the demarcation in the picture below and the tiny strip of “normal” lighter colored skin just before my palm starts. The skin is also red on the tops of my hands. Some people have an entire red hand, fingers and all, but my fingers are pretty much spared, at least on my left hand. I also definitely had red burning skin. My elbow and knee creases specifically would burn and feel like they were sunburnt, making it painful to move them.
- Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth.
YES! Oh my goodness. I scratched clear through the skin some days and turned it into an oozy mess. You could have pointed a gun at me and I still would probably be itching. Sometimes it felt completely uncontrollable. I actually had my hands cramp up many times because I was using them to itch so much!! This is getting much better though.
- Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.
Last week I had a first. I had to vacuum out my bed! There were so many flakes in there that I figured it was the best thing. If I wore dark-colored clothes to bed, they would be covered in flakes when I woke up. This is getting better too, but I still am reluctant to wear a lot of dark clothing. At work during the day I often escape to the restroom and scratch to my heart’s content, leaving little flakes in my wake. I liked the image from PinkLikeaBeacon’s blog, who said something like “The cleaning lady probably thinks I’m eating saltines in the bathroom stall due to all the white crumbs all over the floor”.
- Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.
This is really the only symptom that I haven’t had (yet – anything could happen). My fingers and hands have felt stiff sometimes, but have not swelled.
- Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.
The worst site for oozing was my groin. At peak badness, I also had mild ooze on my neck and my face (forehead and around eyes).
- Itchy skin. The itch is unbelievably intense and feels like it originates under the skin.
Why yes, yes, I had that. Please see above, #2.
- Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch.
Absolutely yes. Sometimes my skin felt exactly like a sunburn. Again, the worst parts for this symptom were elbow and knee creases. On the worst days, the simple sensation of clothing touching them was aggravating. I can see how some TSWers just laid around naked when they could.
- Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin.
I did have and still have spreading rashes. I mean, the rashes I have currently are no longer spreading, but when everything exploded, things spread to places I had never used steroids or only used them maybe a handful of times, like my groin, stomach, and lower back.
- Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.
Absolutely. I would get these ‘shaking chills’ where I was cold and could not stop shaking. I always have had cold feet for the last 3-4 months at least. I would wrap them in towels warm from the dryer, but STILL had trouble getting warm, and they felt like ice. I attributed it just to winter, but come to think of it, yesterday we had nights that were 20 degrees F, like very winter-like, and my feet were not especially cold. This could be another sign of improvement that my body temperature can regulate better. I haven’t had the ‘shaking chills’ in a couple weeks and it has been just as cold around here.
Oh yes. Some days I was completely pooped. That was why I had to go back to coffee here and there.
- Insomnia or difficulty maintaining a normal sleep schedule.
Affirmative here too. Things have gotten a LOT better from a few weeks ago, where I would lie awake until the early hours and I just could not get to sleep.
- Loss of appetite
Oh, besides the edema, this was another one that I didn’t have. I like my food. Good thing I have a decent metabolism and now am feeling up to exercising again, because I feel like I am always hungry and always eating now! Who wants to come with me to the all you can eat buffet?? 🙂
- Very, very dry skin that has the look and feel of plastic.
I get the “plastic-y” skin around my eyes especially. It will be really shiny and dry and feel like there is this layer of skin that I need to break through in order to get to the healthy, living skin underneath. Sometimes I can pick off this layer in little peels like you would peel off a sunburn.
For the TSW friends out there…. when were you convinced that you had TSW? Did you have most, if not all, of the symptoms on this list, and which ones were your worst?