Important 2017 Update! An Australian medical study on topical steroid withdrawal that started recruiting participants in March 2016 has been extended to September 2017. Please inform others in this region! To be eligible you need to live in Australia, be aged 18 or over, have used topical steroids for eczema and stopped using topical steroids within the last 4 months.
Participants will be asked to complete a number of surveys over 2 years.
If you are interested please go to the Australian Facebook page and join for more information and details on how to contact the principal investigator. You are not allowed to view links. Register or Login
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« Last post by AYID on Today at 09:38:43 AM »
I'm doing heavy moisture and healing well!
« Last post by CML on Today at 08:23:24 AM »
There are articles that Fukaya wrote regarding MW on this website. There are conflicting arguments on this website about this topic. For me, the pain I went through was worth it as moisturizing kept making my skin inflamed. Vasoline made my nails horrendous.
Although there are conflicting reports on this forum, I'm still yet to see anyone who went through MW and didn't have any good reports.
Oh. That's interesting. I haven't cuticles either! Didn't even realize it...
TSA/TSW Skin Documents / Nav1.7 channel and Erythromelalgia, otherwise known as man on fire syndrome« Last post by Andrew B. on April 22, 2017, 10:28:51 PM »
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"But if you look closer at her cheeks, her feet, and her legs, they bear traces of a deeper shade of plum. Everywhere there is plum, there is pain. She was born with a rare neurological condition called erythromelalgia, otherwise known as man on fire syndrome, in which inflamed blood vessels throughout her body are constant sources of pain. Because the inflammation is exacerbated by physical contact, stress, and even the smallest elevation in surrounding temperature, Costa lives her life with great care."
"Waxman was interested in the sodium channels found in the membranes of neurons—portals that allow charged particles to flow in and out of the nerve cells. In particular, he believed that one of those sodium channels, Nav1.7, played an especially powerful role in how we experience pain. In his theory, a stimulus triggers the Nav1.7 channel to open just long enough to allow the necessary amount of sodium ions to pass through, which then enables messages of stinging, soreness, or scalding to register in the brain. When the trigger subsides, Nav1.7 closes. In those with faulty Nav1.7 channels, sensations that typically wouldn’t register with the brain are instead translated into extreme pain."
Yes! I've noticed a years back that I had no more cuticles either.
« Last post by xuudxk on April 22, 2017, 09:51:10 PM »
The amount of sun I gave myself that day was just overkill. Perhaps some exposure to sunlight might be good for the skin but I must say, I live a hermits life these days and most definitely avoid the sun a lot.
« Last post by Georgie.C on April 22, 2017, 05:51:18 PM »
I thought I'd mention hydromol. It's amazing stuff. Looks like vaseline but is 10 times better as vaseline didn't seem to do anything for me.
I tried oils and all sorts but nothing helped about from hydromol.
« Last post by Georgie.C on April 22, 2017, 05:46:07 PM »
I love my pot of hydromol. I honestly do not know how any of you go through this without moisturisers. It's the only relief I get. I'm exactly like BraveCs son except with hydromol instead of vaseline.
I'm no expert but I think it does help with the itch as dry skin is unbearably itchy. Also if you scracth dry skin it damages a lot more than skin that has had moistoriser applied. (IMHO anyway). It could be that its just a placebo and I like putting the cream on to make me feel like I have something to help. Either way it works for me.
I haven't read anything aboout the reasons behind MW. I'm sure there are really valid reasons for giving it up. But I will tackle these things one at a time TSW first then when that is done I will think about reducing the moistorisers. I just can't do both t the same time. It would be horrendous!!
« Last post by Georgie.C on April 22, 2017, 03:43:47 PM »
So sorry to read that all of you are going though such emotions. I'm lucky to be one of those people that don't tend to be effected by this kind of thing. Yes I hate the bad skin the itchiness and so forth and all the other nasty things that come with this. But mentally it hasn't changed me much at all.
I think it's due to the bullying I got at school for having excema. That kind of thing can send you one of two ways either over sensitive to people's opinions of you or not giving a fig about them. Luckily I had the latter reaction.
However if my twin sister had have had to go through I don't think she would have faired well at all so I guess it's better for us that it was me. I never changed my behanviour at all even with TSW at its worse. I left the house red face and bandages and all. I dealt with the staring (TBH I didn't actually notice it a lot of the time, until my twin confronted people who were laughing or whatever). I smiled sweetly when people told me how brave I was being (code for crikey I can't beleive you left the house looking like that)
I am wishing you all good energy. Try not to over think things (I know it's hard). Try not to let other people's reactions, energy and opinions of you shape what you think of yourselves. It's easier said then done I know that. But we hsve TSW nothing is going to change that. Only time. But while we are waiting try to limit what it takes from us.
Remember in many ways we are the lucky one. There are people right now on cancer forums. I know what one I would rather be on.
Sending you all big hugs on TSW and the stress that it is causing you.
« Last post by BraveC on April 22, 2017, 02:55:57 PM »
With my son, I cannot tell if the sun hurts or makes his skin better. I think his skin gets better when he is swimming on the daily like when we went to Hawaii, but I think the sun itself seems to irritate it. This may have to do with the heat. It makes sense though that swimming on the daily would help since the chlorine itself kills a lot of the bacteria on the skin. You mix that with the sun and I think you have a recipe for better skin. The only downside is the chlorine seems to dry the skin out.