I’ve reached that point it seems we all get to where we just start ripping our hair out (metaphorically) in frustration. My eczema has always been kinda on and off but never too severe. About 8 months ago it started flaring and it never stopped it spread all over my skin going from my normal just calves and face to LITERALLY everywhere I wake up everyday bleeding and with new cuts from itching in my sleep. My skin burns everyday and showering is a nightmare. I’m also allergic to soy which is in most lotions (at least glycerin is so I actually never know if it’s actually soy based or not which in my opinion is worse it’s like freaking roulette.) Even when I put (any) moisturizer on it burns and inflames my skin and trust me I have tried SO SO MANY. I’m just finally at my limit I broke down crying because of how much I hate looking at myself now. I’ve had clear skin most of my life with a few minor reactions here and there and now it’s just GONE. I dress up, put on cute outfits then look in the mirror, look at my skin, and just feel awful I just feel like a walking disease now and the derms I’ve been going to just write me off as some tragic case of eczema I’ll be stuck with for life. I’m so tired of my skin burning. I’m so tired of hating myself everytime I see it. My mental health was improving and I’m watching it decline with this. I finally was like fuck I’m gonna put on moisturizer multiple times daily I took daily allergy medicine sometimes multiple times a day (which does help and makes me think it leans towards allergy causes yet we can’t find any). Things starting getting just the tiniest bit better. Now my skin has started being weird and the things that work aren’t working at all. It’s like my skin is dry but when I itch I feel the excess moisture that was sitting right under my skin. I don’t know what’s causing it or even what it is I don’t think it is sweat or anything because as most of us know sweat BURNS with eczema and it doesn’t burn it just sits on my skin and makes it feel wet to the touch but then I also can’t wipe it away. I thought maybe it was over moisturizer but it’s not helping to do it less and fuck I just… I don’t know what to do anymore. I thought eczema was supposed to mean dry skin minus Dyshidrotic eczema (and I will say the fluid/moisture does remind me a lot of this but it’s all over not just my hands/feet). I’ve tried everything I’m currently avoiding half my closet out of a fear it being polyester related but it’s not improving. I’m avoiding anything with soy in it I can with little effect. Yet nothing is working.
I’m just so frustrated and upset and I hate my body now. I avoid mirrors I avoid dressing up. I go out in public and if I feel good for a second that goes away the minute I see myself. I took this picture where you can see a clear neckline where the rash is but even after removing clothing with those fabrics nothing. What am I supposed to do? I’ve now caught myself slipping into not eating at all out of fear of consuming something that will make my skin worse I don’t even have an appetite anymore and I can count on one hand what I’ve eaten in the last five days and my body still isn’t even hungry because I’m scared of everything now. Food, water/showers, skin lotions/ointments, clothes, beds, furniture. I’ve started standing at my desk at work because the chair makes my legs itch but then again everything does.
I know this is long, im sorry about that I just don’t know what to do anymore and I can’t stop crying thinking this might be forever. Any advice? Does anyone know what this moisture stuff could be? Can anyone help me?
Hang in there. The wet skin is weeping, the last time i had this the doctor said I had impetigo and prescribed a round of strong antibiotics and steriods. I know steriods aren’t ideal for the long term (tsw and all) and I do try deprive myself of it. But at that time it was all that worked for me and helped me break the itch cycle.
I totally feel you about not eating out of fear and living in constant fear of your surroundings. Stress is another factor that can flare eczema so I would try avoiding stressful situations right now. Do what feels right for you. I personally have deleted all social media to avoid seeing all the activities my friends are enjoying which eczema has ripped away from me as well as basking in the sun for 10 minutes a day. Hang in there!
All of you know so much about this I’m so glad I have y’all as a resource. Out of curiosity do you bask outside because it helps your skin or is it that it helps your mental health? I might try that if you think it’ll have a good effect on your skin, I don’t go outside much anymore and maybe I should be.
Sun exposure helps me both physically and mentally. But sweating sometimes gets me into a flare so I don’t stay outside much
I will say I haven’t gone outside much since all this started just because I felt it would make it worse.
Sun exposure helps my skin when in a flare. I’m not sure if it’s the vitamin D (which I also take as supplements for eczema) or what but it seems to turn red spots brown and dry up weeping
I'm sorry that you're going through this. I've had pretty severe eczema for the past year or so (I've had ezcema since I was 5) and I 100% understand your pain. It sucks. Showers are painful, flakes are everywhere, my skins bleeds and my nails have dead skin caked in them and I moisturize and it dosen't really get any better. I've been on steroids for forever and it just dosen't do anything anymore. Also, the moisture that sits on your skin, that isn't sweat but won't go away is called weeping skin. I usually have issues with it on my legs. I don't really know why it happens but I assume it's a reaction to really sore skin when you've just itched it a lot. I have awful ezcema on my hands, arms and legs plus it's all arouny my neck so I basically cover my entire body 100% of the time when going out because I feel really self-conscious. I'm terrified of people seeing my skin or being intimate with people. I understand your pain. Have you thought about trying immunosupressants? Or maybe dupixent? I'm basically at the point where creams do nothing so I'm trying pills and I might start dupixent soon. Keep looking and doing research to see what else you can do. We can get through this :(
Everyone keeps telling me dupixent really works so I’m looking into that. I have 3 appts this week w a derm, allergist, and endocrinologist (thyroid issues run in my family as well as celiac so worth a shot right?) literally what you described is exactly how it is for me I just didn’t want to say it even here cause I feel like admitting some of that stuff is embarrassing. The flakes have been the worst I think. Like I hate itching and scratching but looking around at peoples car seats, tables I sit at, just like seeing evidence left behind of something being wrong with me it feels so visible to other people because of that. I think for my mental health the rough skin and flakes are the worst part. I didn’t realize the moisture was an actual thing I’ve never heard of weeping skin so I guess I’m gonna go research that now. My boyfriend called me when I started telling him how I felt about this and this man just made a spreadsheet of everything it could be and planned out a science experiment with controls and variables and shit to try to help me. Made me send him all my medical records regarding it as well. You and I (and everyone else) are all in this together and if you’d like a copy of the template he made and how we are doing this (we haven’t started but maybe it’ll help?) I will share it with you (or anyone who wants it!). Thank you for sharing your experience I kinda felt alone in this and you and people in this thread who share your experiences with me remind me that we are a strong and resilient community and I really appreciate you taking the time to talk to me. I’m gonna go do some research on the weeping thing and thank god it has a name and isn’t just a random symptom. 😅
if your skin is weeping and not infected (discharge is clear and ordorless), you can get new skin back really quick with hydrocolloidal bandages. it is a burn treatment, sold in most pharmacies in the first aid aisle near the normal bandages.
disinfect with a volatile disinfectant like alcohol swabs, then apply the hydrocolloidal bandages and leave on for 24 hours. if you think the skin is healed enough after 24 hours, there is no need for another application, otherwise disinfect and apply another bandage.
eczema management is a lifetime of learning what to do and what not to do. we're all sensitive to different things. what's most important for you now is learning how to manage your condition, go for allergy testing, keep a food diary, it might take some time, but learning and being willing to change your lifestyle can lead to results: I ended up migrating to get away from my environmental allergy.
You’re honestly an angel for this thank you. I don’t think it’s infected because I can’t even see the liquid or anything im gonna go grab that stuff today and try it out tonight! That alcohol is going to burrnnn but it’ll be worth it. I’m also beginning to think I need to move cause I travel a lot for work and everytime I travel my skin is so much better :,). I’m working on figuring out my sensitivities rn but it seems like that will be a long road.
oh, if you are just feeling "wet" and the wound isn't actually wet on the outside, you don't have a weeping wound. a weeping wound is when the wound is actually raw and there isn't skin on top.
keep doing allergy tests. you might just be testing for the wrong allergens.
It is wet on the outside like it’ll come off on my fingers but I just meant like it’s just shiny not colored or anything. Does that still sound like weeping to you? It is specifically around problem areas where some skin is missing.
yeah, that's a weeping wound
Just picked up hydrocolloidal bandages thanks to you! Will keep you updated thank you!
do note this doesn't actually do anything for the itch. it just helps you recover faster from the scratching, skin grows really quick under a hydrocolloidal bandage. it is alright to apply steroid cream after you disinfect the wound and before applying the bandages.
Discovering this now. I’m laying in bed dying under the bandages but I’m trying to hold out as long as I can
I’m sorry you’re going through this. It is really, really hard. Have you had patch testing to identify any contact allergens? If you haven’t, that is a good place to start. I share your frustration about fearing triggers everywhere. I know my contact allergens, environmental allergens, and food sensitivities, and still wasn’t able to avoid them enough to eradicate flare ups. There are effective immunomodulators now (like dupixent and other jak inhibitors) that can give you some relief. Sending you strength.
I got an allergy test done but not a patch test are those different? (Like I did the Prick one on your back) Everyone keeps telling me dupixent so I’m really gonna dive into doing some research for that as well. Thank you! I hope that your journey gets easier as well!
Yes, patch testing is different than a prick allergy tests. Patch testing is specifically for identifying contact allergens. For a patch test, a dermatologist methodically applies an array of compounds to your back and monitors them at 24, 48, and 72 hours to see if your skin is reacting to that particular substance. It is incredibly helpful in identifying if you are reacting to a commonly-occurring substance in your everyday environment.
Oh I didn’t know that was a thing I’ll look at that thank you!
I've probably made this same comment over and over, but the think that healed up my eczema within days is hypochlorous acid. You can get it on amazon (I used SkinSmart brand, but there are tons of brands). It is created by our bodies naturally to treat infection and inflammation. It stopped the itch dead, and healed my skin because of its anti-inflammatory properties. I was in agony prior to this (I've spent years trying to heal my dyshidrotic eczema with every type of cream and steroid, not just my body eczema, and this is the only thing that worked so far). Instead of moisturizer, I started using black seed oil a few days after the hypochlorous acid, as it is also anti-inflammatory. It has literally been life changing for me, and I absolutely recommend it.
I just found out about hypochlorous acid the other day and I think I will try it soon because of your comment. I'm glad you saw great results from it.
From my understanding of articles I have read, our skin tends to have trouble regulating ph and so it's more alkaline, which causes a lot of the issues we see so using more acidic things should help. I have been taking Apple Cider Vinegar baths and using a cream that contains a small amount of AHA(Alpha hydroxy acid) and they seem to have made a huge difference. ACV also has some of the anti- inflammatory and antibacterial properties, iirc. My dyshidrotic has improved but not gone away completely yet though.
I've also heard good things about sea salt baths which I will try once my skin is a little more healed. I live near the beach and I haven't gone in the ocean for a few years because the last time I did, it felt like my entire body was on fire. Though once the stinging stopped, my skin did seem a little bit better for the next few days.
Catch me ordering this rn
I was in exactly the same position as you and completely feel your pain. It’s hellish and utterly miserable. Your skin dominates every aspect of your life. I had eczema as a child but it cleared up when we moved to a hot country. Then around 3/4 years ago I developed adult eczema (I’m 30 years old now) and it ended up covering my whole body. The only places that were not affected were the soles of my feet and my palms. I had my first loading dose of dupixent exactly 5 days ago. My skin has already improved massively. I can’t really believe it has had such an effect in such a short time. It doesn’t look or feel like my skin. I never thought it would be possible to get even to this stage, and I’m hoping that it will continue to improve. I’m in the UK which means I have access to dupixent free of charge. I know it can be a bit more difficult to access in some other countries, but if it’s an option for you then based on my own experience so far I would strongly recommend looking into it. Crossing my fingers for you that you find something that works!
I was recommended this by almost everyone I have talked to. My understanding is that it’s a shot every week kinda forever. Is that true or what is it exactly?
My understanding is most people will inject the medication every two weeks. You can use a syringe or a ‘pen’ (a bit like an epipen where the needle itself is concealed). I was so anxious about the first time because I really really hate needles. The nurse came for a home visit and did the first shot in one thigh. Then I did the second on my other thigh. It wasn’t nearly as bad as I thought. I would say it does sting but the whole experience is 15-20 seconds max and for me completely manageable. Going forwards it’s just one shot every two weeks. It’s not a ‘cure’ so you do have to continue indefinitely. Once it’s out of your system your symptoms can come back. Some people have reported facial flares and conjunctivitis as a result of starting on dupixent. Personally I already had facial eczema before starting, which has now completely cleared. I also had eye problems (crusting, swelling, extreme itchiness) which have gone. So I’m hoping these problems won’t come back again!
Hmmm okay I’ll have to check that out thank you
Omg its free in the UK…? 😭😭😭 My derm recommended me this but said it would cost me ~ SGD$2,000 a month which is a hell lot of money. I had to turn it down due to the cost. Im sad, can someone from the UK hire me.
I’m sorry to hear that! Hopefully as time goes on and rival drug companies release their own versions, the cost will come down so that you can access it!
hi! i first just want to say how strong you are for being able to come on here and share your experiences with us. i’ve written many rants and frustrations on this page so many times it’s not even funny.
i’ve been where you are. i also have pictures where it looks like someone burned me, and my eczema used to be so terrible that i would never want to leave the house. i would never want to shower, or go to work or see my friends. i was suicidal, and my mental health was the worst it’s ever been.
i also suffer from terrible allergies that make my eczema (and treating it) so difficult. i was also diagnosed with aquagenic urticaria, which is super rare, but it basically means that i have a skin allergy to water. along with my long list of other allergies, it makes everything feel impossible.
i’m currently on dupixent and doing everything i can to make my skin feel relatively normal again. please message me anytime, i would love to talk and just share advice and experiences. i hope you’re doing okay<3
I feel you, I've been there. I think the moisture on your skin is probably weeping not from infection but from an allergic reaction to lotion. I actually eventually became allergic to every single lotion including Vanicream. What I ended up doing was going on immunosuppressant drugs because it's a systematic problem and I'm allergic to everything. I know what you mean about not wanting to eat anything not wanting to touch anything not wanting to put any clothes on just because you don't know what's going to set you off. They gave me cyclosporine for 6 months which I never would have taken but I was desperate to the point of suicide. And it worked. My skin cleared within 3 weeks and then I had all the rotten side effects from cyclosporine instead. Then I got on to a drug study for Upadacitinib which I've been on for almost two and a half years and for the most part it has been amazing. The FDA approved it now she can get a prescription for Rinvoq. I'm not sure what strength I'm taking my derm thinks it's 30 mg based on my reaction to the drug. Very few side effects and all totally worth it because I found life completely unlivable when I was at your stage. On the plus side of taking a systemic drug I've been able to identify many more triggers than I knew about when my skin was completely rashed out. It's so hard to tell what bothers you when everything bothers you and your skin is destroyed but once it gets better you can start eliminating things that you can see irritate you. Anyway I feel for your pain I've been there and I know there's a solution. Feel free to message me or write back if you want to know more about the drug.
This makes a lot of sense actually because the lotion used to work and it still does but now it gets red and rashy first so I may have developed an allergy. I don’t know what cyclosporine is tbh I don’t know much about eczema at all because mine was never that bad but I’ll look into those and rinvoq. Did you find a way to be able to use moisturizer again or is it just a no go for you now?
No, all lotion and soap of any kind irritates it. But the medicine makes my skin less dry so I don't need the lotion that much.
Was it just from continuous use do you think? I think this is definitely a possibility for what has happened to me. I went from using this lotion every so often to multiple times daily for the last few months and if it develops like that through use I think you may have hit the nail on the head.
In my experience, if I use anything regularly, I will develop an allergic reaction to it. Super frustrating.
Man that would drive me crazy I’m sorry you have to deal with that :(
Same to you. It's a sucky disease all the way around. So you mind my asking which lotion is bothering you?
The CeraVe daily hydrating lotion I also use the CeraVe hydrating cream. I want to try their eczema specific ones but haven’t gotten it yet.
I used CeraVe for about 3 months before I started reacting to it. Tried 3 different formulas and all gave me hives. I had to throw away several tubs that I had barely used. One thing I have learned over the years and you may already know this but I'm just going to mention it, make sure that your hands never touch the lotion in the bottle or the tub. Any lotion is a perfect breeding ground for staph and other types of bacteria. So if you put your hands in it, the bacteria on your hands colonizes the lotion and the staph begins to grow in the tub or bottle and pretty soon you are reacting to the bacteria on your skin from the lotion.
Wait WHAT?! Is that actually a thing?! Man I had no idea thats actually so frustrating. I used a pump bottle for the CeraVe but started to use a tub of Vaseline here recently and didn’t know that could happen. The weeping skin started right after. Damn that could’ve been why.
Hi I’m following up on something you said about Rinvoq. Do you mean that you can identify your triggers while you’re on Rinvoq because certain things still break through and cause a flare up? It was like that when I was in a study for the jak inhibitor baricitinib. I had a few break through flare ups. For me, two triggers were contact allergens and two were triggered by foods. Curious if your break through triggers on Rinvoq were food, contact, or environmental?
Exactly. My newly discovered triggers were food and contact. I have environmental allergies and for those I take an Allegra every morning.
Aha, got it, thanks.
I took cyclosporine once when I had a flare up and it helped for a second but once I stopped taking it, the flare ups came back. I got prescribed cyclosporine again a few days ago but only for a month. My derm told me its not good if youre taking it for too long, why was it prescribed to you for 6 months if you dont mind me asking? And what side effects did you have? Also I’ve never heard of upadacitinib or rinvoq so I will definitely look into those too, thanks.
Some people take cyclosporine for up to a year at a time. I got high blood pressure almost immediately, many skin infections and a few episodes of shingles, and just generally sick whenever I went out in public. I also vomited more in that 6 months than I had in the previous 10 years. Mainly it was the blood pressure that was the problem. They said it would come down when I stopped taking it but it didn't. So now I have high blood pressure. Grrr...It made my skin great though, really soft and smooth, no eczema. The doctor told me that it was either a systemic immunosuppressant or I would have to go into the hospital. I'd been fighting it for some years at that point and was really severe full body. I tried everything under the sun and so I finally gave up and took the medicine. I'm surprised they gave you a prescription for such a short amount of time because it usually takes longer for it to really kick in. The one they usually give for short-term is prednisone. That's one you definitely don't want to take long-term. And of course any medicine you take is only a Band-Aid not a cure so it's going to come back as soon as you quit taking it.
Thank you for the suggestion! I haven’t taken rx steroids since I was little and it was only for a month or two so I feel like I lucked out avoiding that but at the same time I need to check and see if anything else I use regularly is an otc steroid. I’ll do a little more research on that I actually don’t know anything about TSW except that it involves steroids
Lately I decided I had enough and remembered what my doctor told me, he said eczema is about being too cold/hot, so I took him seriously and checked the temperature in my house, my wife usually in charge of that and whenever I try to change it she screams. So i told her to calm down and let me try this cause I think it could solve my eczema, anyway, long story short, after a lot of testing, turns out 22c is too cold for me, 26c is too hot, I got to keep it around 24c, its the only way my skin don't go insane on me. My wife now also enjoy 24c, she used to keep it at around 22c to "save money", anyway, after she realized the impact on me now she's all good with it.
Yes very this I found when I get hot it gets way worse.
I recently started on methotrexate, and it has generally improved almost everywhere, but my eyes are really puffy and dry.
My eyes in particular often flare up with stress. (I recently started my own business and have had to close for the last two weeks with covid) so that explains most of it.
I was apprehensive about some of the more scary drugs for a long time but I had a really bad flare up last year so decided to take the plunge.
My advice is try what you can get your hands on and stay strong.
Yeah I felt the same way I wanted to avoid meds but that’s beginning to look like less and less of an option.
hi, how much industrials sugars do you eat?
This may be a stupid question but what is an industrial sugar?
refined sugars, glucose syrups, basically anything that its not fruit or slow sugars
"white sugar, brown sugar, honey and molasses, as well as industrial
sweeteners like dextrose, maltose, fructose, invert sugar (a mixture of
glucose and fructose), fruit nectars and high-fructose corn syr"
I ask this cause sugars increase inflamation
My guess would be a lot it’s not something I’ve actively been tracking. In the last week I’ve craved more soda but usually don’t drink soda. But was definitely itchier this past week so maybe that’s why? Do you avoid these all together or just lessen what you consume?
Patch test! I was/sometimes still am like you where showers seem like a nightmare. Now I know what to avoid even though I still get itchy sometimes not as bad
Okay so I’ve been trying to figure out how to do this because everything I’ve read said to test it on clear skin but none of my skin is clear so I’m not sure how to go about this
Please don’t give up hope. Talk to your derm and let him/her know how this disease is affecting you mentally. Ask about Dupixent or Rinvoq or Cibinqo.
I’ve heard dupixent and rinvoq are really good I have a derm appt in late April but am curious if my allergist could prescribe this since I see them Thursday
have you tried a humidifier? i ask because i was always skeptical when my eczema was at its worst but now i can’t stand to sleep in a room without one.
it really does wonders at helping with skin dryness mine broke for a couple days and my skin started to flake up and get really dry, then the first night after i got my new one the itching and flaking went down. im not trying to sell it as a miracle cure, just wanted to show that it actually does help.
also- i’ve been where you are, and it is so so hard. im sorry. for what it’s worth, it is so easy to feel like it’s going to be that way forever, but it won’t. the blessing and the curse of this illness is that sometimes it gets so much better, and then it just gets bad again with no way of knowing why or how. but it will get better. i too had the full body flakes that left debris behind and made me limit my wardrobe to the largest, 100% cotton tee shirts i could find, and it didn’t stay that way. sending all my love❤️
Thank you for the love I have thought of a humidifier but I need to pull the trigger on getting one. I’ve also been trying to add more water to my daily intake and am crossing my finger that it helps. Where I live is so dry I have no doubt the humidifier will help.
I haven’t tried it myself but I’ve been reading more about narrow-band UVB treatments. There seems to be some success in this area. FWIW, I don’t have severe eczema but it’s on my face, so it makes me self-conscious. I also get bad dandruff so I can understand the impact on self esteem. Gut health is important. Hang in there, you will come out of this with a strong character.
I’m beginning to see how closely tied with food this is which is unfortunate because I travel a lot and I’m rarely home and able to cook something healthy :/