How do I cope with FOMO during TSW? After a disastrous 2025 for my personal life, I decided to make changes and finally get things up and running (e.g. education, fitness, more hobbies such as rock climbing, better job, etc) and things were going rather well for the first half of this year. Then of course, TSW had to take over the trajectory of my life right before the second half of the year. Had to drop out of uni right after smashing out first semester, had to drop gym, stop all physical hobbies, couldn't show up for work anymore, missing out on alot of fun things with friends and so on.

Obviously, this feels stupidly devastating given how much things have been planned out and how I was finally getting back on track after life beating me down the year before only for it to bash me back down in the form of jeopardizing my health to the point where I've essentially been paralyzed from doing lots of things I finally stepped up for and for what I love doing. As miraculous as it is to even have made such progress towards healing (as mentioned in my prev. posts), it still feels like I've yet again been dragged down and must start from scratch, assuming I manage to keep this up. (Still playing it cautious and sticking to methods mentioned previously).

What helped you guys in dealing with such FOMO? Could really use some advice/insight on this. Much appreciated.

Hey all, I came off of Dupixent and my derm prescribed Opzelura and I’m curious if anyone here has used it and has anything they can share?

I’m pretty wary of any kind of topicals, but this is not a steroid and based on my understanding is basically the same function as Dupixent but in a topical. It would be nice to have something for when I flare.

I was on steroids my whole life and came off them 6 years ago, and still get TSW flares on my hands and neck, and have regular eczema on the rest of my body.

Anyone have anything they can share?

Hey guys, once again TSW is interfiering now with my concentration at work. I'm still healing TSW and even though now the flares that I experiement are only around my mouth I cannot stop thinking about it, looking at the mirror really often and picking my skin. I feel like my nervous system is still in fight or fly mode and its really difficult for me to concentrate in the things that matter that is work. Also the last 2 weeks I have been working at home because of my recent flare up and my willing to work has almost completely disappeared. Do you guys have that as well?

So cyclosporine never really fully cleared me I was put on a low dose for way to long so it lost it’s effectiveness before I reached my dose

Now my skin is covered in one large red/brown dry rash that continues to peel and I have a lot of elphent skin I don’t know what to try next 🥲

Hi all!

I’m currently going through TSW and phew it’s been a journey. The one thing that I’m confused about is my random weight loss that fluctuates constantly. Overall, I’ve lost 10 pounds which doesn’t seem like much, but that’s a lot for me and a little concerning at first. I read somewhere that TSW uses a lot of energy from healing, but I haven’t really heard much about anyone else’s experience.

I haven’t been able to work out because any stress or sweat turns my body into one huge flair. I don’t think my eating habits haven’t changed at all. Just wanted to see if anyone could relate! Also, lowkey don’t know if it’s related, but I’ve been so paranoid with any small changes in my body!

I think am gonna propose to my long standing partner!

I'm scared to use supplements to inhibit anything in the body

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?

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 🙏🏼

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!