Hey lovely people, hear me out: I know that if you have eczema/TSW fisrt thing they tell you is cut any form of sugar and junk food. Today I've been consuming some candy just because I really wanted to stop scratch me and i was craving sooooo bad sweet. I follow a pretty rfestrictive diet so i didn't eat any refined products for a long time. I decided i wanted to try my favourite candy and a rush of dopamine just invaded my brain and it feels like im in a cloud really relaxed and i didnt scartch a single time. My nervous system is so calm right now and it already passed a couple of hours since the sugar rush. I would say that if you have a bad time scratching its much better if you take some candy (not a lot) in order to relieve that itch inside of you. At least for me this week has been insane with a lot of itchiness (im trying nmt for the first time) and having that candy was the only relief i had since last week. I tried everything from melatonin pills, mangnesium, sleeping pills nothing worked and some candy made my brain to shut down that itch. Just venting of course not real advice but anyone had the same experience?

So I’ve struggling with a lot follicular problems I believe 90% are due to cyclosporin my hair is also very brittle any one have this ?

When did u get to your worse in TSW because when you do
The only way is up ?

Check out me page for pics of my hands at their worst… in July i finally felt peace with my hands, no more redness, no itch, comfortable to move, no weeeping. Since then i feel my skin has smooth out a lot. Very happy :)

What goes unsaid can start to feel shameful by default. Of course you’d feel “dramatic” for feeling something nobody voices.

I didn't have the words to articulate this when I was going through it, but now that I've found the other side of TSW, I have. There's a sense of humility that comes with ‘admitting’ that you wanted to end your life because of your skin. It's a feeling that TSW made me very familiar with, and I would've felt a lot less abnormal in seeking help if it felt more justifiable, normal, or if I'd seen it spoken about before.

I think it’s important that we keep breaking down what this condition actually is like to experience, for both the people experiencing it and those who still undermine it.

It’d mean a lot to me to check out my recent piece: The humility of not coping with “just skin” , and give it a share if it resonated.

And if you're in this thread, I hope softness finds you soon x

While my body has been returning to normal life after 6 hellish months, one of my major triggers is still via heat and sweat. While my body has slowly become more tolerable of these triggers (e.g. less common/intensive/doesn't last as long as before). How long until I am able to fully tolerate heat and sweat like a normal person again? After avoiding heat and sweating for soo long/the major healing progress made (mentioned in my previous post), I'm currently testing methods such as slowly reintroducing myself to these factors by going for walks in the sun as well as simply sitting down and let the sun hit my skin in hopes to get my body adapting to it sooner (if this method did/did not work for you lmk thanks) and I guess I am seeing results? (according to my recent experiences said earlier). Is there anything else I can do be free of these triggers or is it simply a waiting game for my body to be ok with it again?

Heat and sweat never used to be such a major trigger/very rare for it to be pre-TSW, until 6 months ago when I did enter it, so I'd like some insights on this if anyone's experienced it and such as I'd like to get back into my various physical hobbies sooner or later once this is fully behind me. Thank you.

How do you speed up the healing on the chin/under neck area? I’m constantly scratching it and the bone deep itch is unbearable. Everytime it heals, I reset the healing process by scratching it raw.. I’m so over this been dealing with this for 3 years now.

Hi everyone. Just wanted to ask of anyone's experience if they reused topical steroids after being in withdrawal and if they had another flare up how bad it was and how long it set them back.

I was pretty much 2 years off last contact with steroids, 27 months since regular use. And stupidly I let a doctor convince me to use a very mild steroid for 12 days for stubborn inflammation. It was a month ago and suffering, physically and also with self loathing of how I could be so stupid! But also suffering with worry how long this might set me back. Anyone's stories of similar experience and how it played out would be much appreciated 🙏🏼

Just wanted to share the results I've seen on my first week of ciclosporin. Had been feeling pretty hopeless, so thought sharing might bring hope to someone else <3

The last few months have been rough! I came off the steroids at the end of July and felt like I hadn't really been making much progress, suck in cycles of infections, flaking/shedding, burning skin then the unitchable itch.

But finally some progress! This is just five days on immunosuppressants! I was starting to forget what colour my skin was!

Definitely still not feeling 100%, but I feel worlds better than I have in a long time. The itch is subsiding, my skin is holding some moisture and the burning is minimal. Still working on being able to sleep, but got a few short naps last night which is something.

I'm aware this isn't a cure and not a long term solution, but I'm so grateful for a bit of a break and the opportunity for my skin to start to heal.

So im a black woman and i have develop white patches on my hands and feet. I was wondering on what i can take to help restore pigmentation. As far as i know, hypo takes long than hyper to restore itself

I believe I am about 6 months into battling TSW, but compared to the typical timeframes of healing, it feels as if my skin is slowly returning to normal already. Dealing with the first stage of TSW e.g. red sleeves then spreading to most of my body, highly intense flares, high sensitivity to temperature, oozing and skin heating up like crazy etc pasted within a couple months. Went into the skin shedding phase and despite the rapid shedding of the skin, it seems to have mostly come to an end after about 2 and half months??? While of course my skin it still quite sensitive to heat and sweat, it doesn't feels as intensive as it was before and is slowly adapting to such things again as well as dealing with a couple flares here and there due to still sensitive skin barrier likely picking up a trigger here and there.

P.S, my methods was using silk mittens during sleep to prevent night time scratching to cause significant damage, adapted a hybrid approach to both using NMT and using moisturizers with barrier repair like formulas, (e.g. using NMT to get the skin to shed for about a week, then showering + using a barrier repair moisturizer afterwards to ensure the skin sheds safely to prevent tearing, cracking and infections.) Avoiding as many irritants as possible such as keeping room and house clean. Given heat and sweat was also a major cause of my flares during this time, I tried to stay as cool as I can for as long as possible and minimize exposure to said heat and sweat + possible triggers. Then, slowly re introduce heat and sweat by going for relaxing walks in the sun, going outside, sitting down in the sun etc to get my body slowly adapt to such things again (Body still flares to these, but its becoming more tolarable and i am slowly able to last longer for walks and such, like being able to walk for 20 to 30 minutes in the sun before a flare sets in. As for diet, I've tried to stick to mainly eating clean such as eating more veggies, whole foods etc. (FYI, did not go full on with this via elimination diets and such.)

As much as it feels great to have gained mobility again, not waking up shedding skin/blood or ooze all over my bed + sweeping my skin off the floor anymore, flares not being soo intensive etc, compared to how long it took for others to heal and their methods, it just feels too good to be true that I am slowly adapting to normal life this soon and just feels like I am doing something wrong despite such progress. Any thoughts on this or any similar instances per say?

Anyone else having this atrophy issue? On neck, inner arms, inner legs?

Did anyone stop oozing and then it returned moths / years later ??

Yall I dont even know anymore. I realize oozing is a normal part of TSW. but this is my 6th yearly flareup and this has been the worst one yet. I have insane yellow crusting all over my face and went to urgent care and they seem to think its impetigo (non bullous or whatever). My question is how do you differentiate normal tsw vs something like that? I think i will try the topical antibiotics but wait a few days to do a course of antibiotics because I read about people here doing course after course of antibiotics and that doesnt seem like the issue.

hi there - has any woman ever experienced tsw after applying topical steriods down there? I used a medium potency for 1 month and then stopped suddenly back in March. (i was not educated or informed by my doctor about how to taper properly). if so - what were your symptoms and how long did it take you to recover? I'm now in month 7 and it started off really intense with itching and burning, now the itching and burning is not always bad, but sometimes it flares and it gives me nerve pain in my legs also.

Thanks for any advice/thoughts as looking for reassurance!

It still seems to be spreading and getting really dry I am 6 months completely off steroid and 1 year in with these rash’s

So I’ve been dealing with TSw 1 year 2 months. But officially stopped steroids 6 months 1 week ago my skin seems to still be strong worse cyclosporine still isn’t working and I’ve been on it 9 months I had a biopsy that came back inconclusive I feel so lost and like this is never gonna end any advice or hope would really be appreciated guys

I’ve been diagnosed with cancer, and if I was too do chemotherapy dexamethasone is a prescribed drug.

Idk what to do with myself tbh. Has anyone else have to take oral steroids for other reasons and flared back to day one?

Hello! I was wondering if anyone knows of any TSW friend dermatologists in NYC that accept TSW as a legitimate condition?

Avez-vous aussi une folliculite persisante sur le corps ? J'en ai sur les cuisses : des boutons rouges ou blanc avec du pus autour du poil... Est-ce un symptôme du TSW ? Car malgré tous les traitements, ça vient, ça part... et ça peut venir sur mes bras, mollets... Cela fait quelques mois que je lutte avec ça

Est-ce parce que la peau est abîmée ? Peau sèche ?

J'espère que ça s'estompera... :(

Hello, je voulais savoir si c’était fongique ou toujours le TSW. Je l’ai que sur mon bras droit et ça s’aggrave la nuit. Merci!!

im asking this because i need a beacon of hope amidst all the flare ups, im so tired of my skin flaring up after finally seeing a slight chance of it recovering.

for context, my doctor prescribed me oral Prednisone for 15 days, tapering them every 3 days. alongside that, im also applying steroid creams wherever needed, 1-2x a day.

now, i have officially finished the program and im scared that i'll get another bad rebound. i have gone through it twice already this year, i never wanna have to go through that shit again.

to anyone that has undergone any steroid treatment for a couple weeks. what did you do afterwards to maintain the state of your skin to avoid/minimize TSW symptoms?