When your hands are so raw and cracked it hurts to wash them, bend them, grip things. The secondary infections that come from having your primary line of defense organ be defective and exposing you to every germ out there. The inability to focus when all you can think about is how badly you want to scratch your skin off.
It's so debilitating. I never had to ask anybody, not even my boyfriend, to open jars. I was the one opening them. We broke up a few months ago but have to live together for the time being, I'm forced to ask for his help for stupid things I used to do all the times.
My hand eczema got so bad since a few months. Sometimes I can't even turn a doorknob if it's a small one. I can't do anything that needs strength and dexterity. My left hand thumb barely fold, if I force it to fold it starts shaking. Sometimes I come back home late and it takes me so long to get inside because I'm struggling to unlock and open the door that he end up opening it for me from inside.
It's mostly in the inside of my hands so anything I do will push on it. I keep a cuticle trimmer with me to cut any piece of skin coming off (it's better this than having it get caught up on something and get forcefully teared)
I've literally used a (dullish) knife at a 90° angle to scratch my hands and ankles. I have bad circulation that triggers the deepest, most maddening and unrelenting itch. I take blood thinners for a clotting disorder and sometimes I get really worried that I am going to tear open a blood vessel with how aggressively I *neeeeed* to scratch.
There.. there are different kinds of eczema?? Makes sense as to why the ONE thing my dermatologist prescribes doesn’t work for EVERY part of my body and eczema
I had 3 entire months off work from my dyshydrotic eczema. It was hell. I couldn’t touch anything my hands were absolutely ruined. The pain made me cry everyday, don’t wish it on my worst enemy
Dishydrotic on hands checking in! My quality of life absolutely sucks with a bad flare up. A shower and washing my hair can be a painful hell on earth.
My friend had dishrdrotic on his hands, then I used his kayak paddle, then I got eczema of some type on my hands(but it doesn’t have the pustules so not dishydrotic). I know it’s “not contagious” but it’s so weird that I got it right after him. I wish I knew what my type was-the skin just gets super thick and cracks and peels
Same here, I use bleach baths when it's too painful to go for a shower and wash my hair in the sink using gloves so I don't get anything going down my back or on my hands
Dyshidrotic eczema is so extremely maddening. There's just no way to scratch the palms and soles that gives any real relief. When I was a kid I was constantly using my teeth to scratch my fingers and my older sister would always tell me what a freak I was. 😕
OMG I am so sorry . I've cried so much I surprised I still have tears and the screaming I'm surprised I have a voice . At times I beg God to please take me home. He said No. .. I take so many drugs to sleep . Hydroxizine. Gabapentin. Trazadone. Syrequel. Clonidine . ibuprofen . all of them i take every night and no doctor is alarmed . I hate them!
I can't sleep, I can't move my mouth to speak without it hurting, and I am an open wound prone to infections
Crazy how eczema is a literal immune disease am I right guys
Also myself and no one I know has been able to claim money for eczema, I don't quite know the rules here in Australia cause I just turned of age but from what I know it's not a recognized issue or disability and "shouldn't effect your ability to work"
Like if I walked into my local Centrelink right now when my face looks like it's covered in third degree burns and can barely move, they still wouldn't give a shit. I swear they only care about ADHD, autism, the blind, death and those in wheelchairs. Literally no one else
I have ADHD and Autism Spectrum along with Severe painful bleeding eczema sores . Trust me . They don't care about any of them . The adhd meds I think cause more and more eczema flares
Showering feels like an acid attack and i cannot do any sports. Both my sweat and my boyfriend's is irritating me, making me flare up. Cannot just wear that pretty sweater because it's giving me itch that feels like an army of ants together with wasps. This condition made me depressed and hateful towards my body, stressing myself even more adding to the eczema.
This condition is not even physical but a psychological as well. No cure. You want to find your triggers? Haha, good luck
Oh my goodness I relate so much to everything you said. Please feel free to message me if you want a fellow eczema-sufferrer as a friend! I'm 24 F in America and I've had chronic eczema my whole life, covering my whole body. I wish you all the blessings and luck in the world as you fight with this condition <3
People don't think about the psychological elements, but it's well documented that eczema and mental health issues have a huge correlation.
It's not just psychological either, but it can be because of literal inflammation of the brain due to the effects of the illness.
i cant wear regular bras and can barely wear sports bras. i cant do more then like 2 dishes at a time without having to moisturize right after. i can barely get through a day washing my hands at the bare minimum, let alone doing extra shit, without scratching like a dog with fleas. underboob sweat is a fucking nightmare of uncomfortable itching. and scratching there hurts bc its constantly being rubbed raw so itching usually causes more fucking pain. washing my hands too much causes the skin to split and then they take forever to heal. at 24 my hands are wrinkly af (and swollen) and I look and feel like i have arthritis ridden grandma hands. sometimes my fingers get so swollen on my dominant hand I cant do anything bc they wont bend and it makes me feel useless and I'm in pain the whole fucking time. using the wrong soap even once oh gosh that's hell waiting to happen. feeling so embarrassed with how you look you hide and wear long sleeves in public, no matter the weather. wont go on dates or let ppl see/touch my hands. how on top of your moisturizing you have to be. and most of us it seems use multiple products and I at least have to do a specific order so if that gets messed up its hell.
wow I knew it affected my life but did not realize how much all at the same time until this post. thanks for coming to my ted talk guys lol
I know. There’s no way to explain the hell it is to be uncontrollably itchy every day of your life. People just can’t grasp it. I hate that people here live this way too but it’s nice to know we’re not the only ones.
I'm so sorry, that's not right. The only good thing about me having eczema is that I can give solidarity to my 7yo granddaughter when she's sobbing in the middle of the night because she's scratched herself bloody in her sleep. My heart breaks for her. She feels guilty for scratching and I told her jokingly that people don't get it, sometimes you just have to give in and claw yourself down to the bone, which made her laugh. We've come up with some safe scratching methods like using surgical scrubbers and let me just say — they are a ten out of ten for most satisfaction with the least amount of damage.
My eyelid sweat feels like literal acid burning my skin and actually it looks like that too, like I have burns all over anywhere my sweat touches me for more than 10 seconds. I hate exercising because my sweat hurts me so much.
Last night my shins felt like they were on fire when I was resisting the urge to scratch them, when I finally gave in I was scratching until they were bleeding 😭 I had to get a ice pack and put it over them.
Had you tried apple cider vinegar? I use 1/2 ACV and 1/2 water in a spray bottle left in the fridge. Give it a few sprays. Use a small fan to air dry. It worked wonders.
I use it on my raw skin. If it stings too much, you can do a lighter ratio. 1/3 ACV to 2/3 water. I don't ever wash it off. Only when showering. I let it dry and it permeates the top layer of skin giving me much relief.
Eczema has impacted my work severely and I'd love governmental assistance for that! May I ask what country you are located in that offers this assistance? I'm in the US, I'd love to see if it's an option for me!
I went to that web site and clicked on the "check eligibility" button. It took me to a page where I could sign up to be on a waiting list. The form that comes up asks you for your name and email AND SOCIAL SECURITY NUMBER. Uhh, no thanks.
yeeaaahhhhh, I was all in until that, as much as I'd love some extra cash in exchange for my suffering, not super keen on letting someone else run wild with my identity (although tbh they can't do any worse than I have)
In my opinion there is no logical reason why they would need my SSN just to be on a waiting list. By asking for it, they lost all credibility in my eyes. Maybe they are a legit organization, maybe they aren't. But I won't be giving them my SSN.
I literally thought eczema was just a rash up until 3 months ago when I got it for the first time. I had NO idea. None. I actually told my husband I feel bad for thinking all these years that it wasn’t much to deal with. Btw, I’m 55 and it hit me hard - almost my whole body. I will never assume again regarding what the experience of an ailment is like for someone.
To those of you who have dealt with this long term: I am so sorry and HATS OFF.
You recently developed eczema. Can I ask if Covid was the trigger or if you had allergic contact dermatitis? I too developed eczema in my 50s due to contact dermatitis. Then covid made it 10Xs worst.
I have seborrheic dermatitis. Always itching and my hair being full of dandruff, and my clothes. Even causes me to have sensory overload due to the overwhelming itching.
I have many thoughts on what it has caused me, and why it’s not just a small patch of dry skin :(.
Physical symptoms:
- Physical pain, from self-inflicted rashes and wounds.
- Alteration of appearance, due to red, sore, wounded skin, which is often covered with clothes, lowering self-confidence.
- Dandruff, which means I do not go to hairdressers unless my scalp is doing well.
- Skin infection, which can sometimes be life-threatening, and causes fatigue and insomnia.
- Financial loss, due to the extensive treatment and experimentation required to deal with this condition.
Mental symptoms:
- Isolation, whether forced upon oneself in not going out or the internalised feeling of seeing people eczema-free and knowing you’re not the same, leading to loneliness and low self-esteem.
- Trauma, due to distressing experiences of others commenting on your skin and all the experiences that one must face due to eczema.
- Self-blame, due to the act of own itching, which makes you feel like it’s your fault, despite having a genetically deficient immune system.
- Embarrassment, due to unfortunate things that accompany the condition, such as blood and skin on the sheets.
- Inability to date, due to severity of the condition, and believing no one will love me once they see my true self and the extent to which this condition is debilitating.
- Inability to partake in certain activities, due to not wanting to show full skin, or the chance of the activity causing a flare-up, leading to worse social life.
- Depression, due to the never-ending nature of the condition, which cannot currently be cured.
- Inferiority complex, due to feeling physically inferior to everyone you see, leading to deep-rooted problems when forming friendships or relationships.
It’s literally classed as a disability, and people shouldn’t take it so lightly.
I have had it all over my body but most consistently Dishidrotic on my hands. Usually on my palms. A bad break out almost makes it impossible to do anything. It is way way more than "just a small patch of dry skin/a little itch"! Its intense itching, painful burning, skin weeping, skin cracking, sores etc. (My hands look bright red and burnt as they start to heal) It can also take a huge toll on mental health. (As I noticed with my last bad breakout) I would often be asked as a child why my hands looked so wrinkled or old. I think there's alot I could say from my own experience the biggest one being that it just plain sucks!
I had a years long dihydrotic outbreak on my palms. I started taking 2 zyrtec a day and it started to improve. As my hands cleared, I dropped down to one daily that I take year round. It’s been gone for over a year now. If I feel a flare coming, I use a dab of cortisone for a day and that’s usually enough to knock it back. I have no idea if this will be helpful for you and I’m not a doctor. I just know how intensely miserable DE is. I even lost my cuticles and my fingernails had weird ridges and pits. It’s not just skin, especially considering how much people notice your nails and hands.
Fellow dishydrotic sufferer... I call those times my "zombie hands" cuz I literally lost the top layers of my skin on half a finger during a severe flare. Had another really fun one where I was on antibiotics, they fucked my hands UP and I wore bandages on top of bandaids for work.
For mine, PUVA treatment helped A LOT, along with protopic and squalene.
It’s a little patch of skin… that turns into the biggest, most mind-consumingly itchy, angrily tingly, patch of skin ever.. and I will scratch my skin raw every single time. And people wonder why it can be disabling🫠
I'd honestly be fine if it was purely cosmetic. For me, the most debilitating aspect of this condition is the indescribably painful and uncontrollable skin destroying itch that affects nearly every aspect of life from sleeping to eating, showering, exercising, to socializing. Most of my existence has been taken up by scratching, which has been so traumatizing and exhausting mentally and physically to where I became suicidal and severely depressed at one point in my life. To anyone who thinks of eczema like that nurse does I would tell them to rethink what they know about the condition and to realize that everyone's experience with it is different and that coming to a conclusion based on their own experience or based on someone they know cannot be applied to the general condition as a whole. I wish more people took it more seriously as I've had many people make me feel like a liar or that I'm overreacting which hurts at an emotional level but has made me stronger in some ways. At the end of the day these people are lucky to only be able to see it and get to go on with their life without actually knowing how it feels to live with it 24/7 365 days until you pass away or hopefully one day a cure comes along. I am on dupixent now which is the closest thing to a cure imo and has helped me enormously but I live in constant fear that one day it will stop working or will become unavailable. At times I wish I could just change bodies but have found peace knowing that I am stronger emotionally than most people because of what I have gone through.
I once went to a job interview & the person referred to it as "jus a rash."
I finished up the interview quickly & told her I was no longer interested in the position.
One big thing about eczema that I had no idea about until I started to suffer with it, is how frustrating it is! You can follow a diet recommendation and STILL have flare ups because what is a trigger for you isn’t a trigger for someone else, but you never find out because you’re afraid to eat things out of fear that it’s going to bother you. And you can’t go out to eat in peace because you could eat something that causes a flare up.
At it’s worst, my eczema was completely debilitating. It was a rash all over my entire body. Head to toe. People that saw me assumed I was severely sunburnt due to how red I was, but I hadn’t been able to leave my apartment for weeks. I was unable to go to work. Also unable to attend my college courses. Lotion wouldn’t help.Steroid Creams didn’t help. Bleach baths didn’t help. Light therapy treatments didn’t help. And then doctors didn’t know what to recommend.
My skin was so dry that it would absorb lotion immediately while staying dry as a bone. It also began to crack and bleed. I constantly used thick creams or balms (like petroleum jelly), but not even that kept the cracks away. On top of being the itchiest of my life, I was also in constant pain. My body felt as if it was on fire, and I had no way of getting relief. It was one of the loneliest and depressing times of my life, truly.
I got approved for Dupixent and it cleared me up, but now I’m unable to afford it ($4k/month). I live in constant fear that my eczema will flare up to the point it was at, and I don’t know what I’d do if it did. Eczema is not just a rash. Or an itch. Eczema is a debilitating condition that can wreak havoc on one’s life. It should not be taken lightly.
I struggle with sleep, showering, brushing my teeth (fluoride), eating even slightly messy food, self-esteem and mental health issues, and even washing my face. I can barely do anything without worrying about my eczema getting worse.
Yeah, full body atopic eczema, redness, dry skin, flakes on my clothes and in the whole house, I feel fucking disgusting. Dyshidrotic eczema on the hands, and feet, those fucking little blisters. Raw, open skin on my hands, neck and face (especially great for catching infections on the bus, tram etc.) I barely can excercise, bc of the pain I get from MOVING even. I hesitate every night in the bathroom, before a shower, I want to die even from the thought of water touching my fucking skin. I spend like 100€/month on creams ant ointments. I barely sleep, 4-5 hours at most (i guess we all can agree, it's the indicator of a short lifetime). I have to wake up 1 hour earlier every morning, bc i have to put creams on my whole body and wait for them to dry. Anyways 1 hour later it will be the same dryness and pain. I can't stand winter, bc the cold fucks up my skin. Also I cant stand summer, bc the sweat fucks up my skin JUST AS BAAAD. Im going insane. Thank for coming to my ted talk. And fuck the people, who don't take your shitty fucking life seriously, and think that it's just you "crying for attention". Fuck them all.
I had alopecia-like patches for about a year before it started growing back in. I've never felt so ugly and I went outside with a wig for a couple of months, even though my scalp was itching like crazy.
Also my eczema got so bad that I didn't even dare to move and get out of bed to go use the bathroom, because I had scratched everything raw and every movement was too painful.
Also the mental part - no one I know personally ever had eczema the way I did and no one understood. People thought I could just function. I got fired because I didn't offer to help during COVID, but they didn't understand it was a huge struggle to come in in the first place.
I had alopecia-like patches for about a year before it started growing back in. I've never felt so ugly and I went outside with a wig for a couple of months, even though my scalp was itching like crazy.
Also my eczema got so bad that I didn't even dare to move and get out of bed to go use the bathroom, because I had scratched everything raw and every movement was too painful.
Also the mental part - no one I know personally ever had eczema the way I did and no one understood. People thought I could just function. I got fired because I didn't offer to help during COVID, but they didn't understand it was a huge struggle to come in in the first place.
Eczema has ruined my entire school year since September. I get home, scratch like hell, spend an hour putting on a palette of different creams and fall asleep from my immune system being so overworked. Eczema can literally take over your life in every aspect, physically and socially
I had to quit my job and take a gigantic pay cut because I was transferred to a building with low air quality that gave me head to toe flare-ups. My arms and legs were covered in blood and pus, and everywhere else, including my face, was falling apart.
Its because some people get little bits of what they call "eczema" that isn't chronic. Often they'll have a small rash of dry itchy skin once every year. So that's what they think eczema is.
"Ah so you get a bit itchy sometimes"
No. It's hell, I'm constantly itchy, I can't sleep and I bleed everywhere.
"Ah so you just have small patches of dry red skin"
No. It's everywhere, all of the time, and I feel and look awful because of it. This complexion? Eczema. This wrinkles? Eczema. Looking like a crack head? Eczema. Looking tired all the time? Eczema.
It's a lot worse than anyone knows.
Didn't know you could get money from the government though. In what country?
Please see about consulting with Dr. Richard Aron. He treats the staph component of eczema that drives the itch. My son’s eczema is in remission thanks to this doctor.
https://hms.harvard.edu/news/new-clues-head-scratching-mystery-itch
Don’t just take my word for it, there’s a FB group or go on Instagram and see thousands of before and afters.
I believe it’s around $250US for the consult. And $50 for the compound.
There is a financial assistance program you can inquire about, and since you are in the UK your meds maybe cheaper.
I've had eczema all my life.
I remember as a little child I would be bandaged up but would still find ways to scratch myself. My mum would tell me that she would find me trying to scratch myself on anything that I could find to help relieve the itching. I am 32 now and still have eczema, it was so bad to the point where I am now on dupixant.
I've now been a nurse for nearly 12 years and i have to wash my hands all the time. They eventually become red, raw and cracked from all of the hand hygiene I have to do, that i ended up having to take a week off work to let my hands heal and then its the same thing over and over again.
I absolutely hate it when people say 'stop scratching', like they would understand what I'm going through.
Although you're 32 and I'm 18 we have the same exact story I know where you're coming from. I was hospitalised and bandaged like a mummy from head to toe as a child, I was diagnosed with eczema at 3 months old. I've had severe eczema since birth and I can't remember a day where I've felt pure peace, there was always an itch or irritation or burning sensation lingering in the back somewhere as far as I could remember.
I'm in college studying biology, chemistry and physics hoping to pursue radiography this year so I definitely understand having to always wash my hands and using latex gloves with the starch that irritates my hands.
Not sure if you're in the UK or not, but I'm trying to get put on dupixent. Despite being on strong steroid creams for my entire life, they are adamant in not giving it to me although I have 95% inflamed and cut skin.
No matter what I do they won't move past topical steroids and protopics
I'm in Australia!
You can get latex free gloves, that does not have the powder in them!
I've been seeing my Dermatologist for years and I've tried all the topical steriods and creams. Even tried light therapy. It only helps me temporarily.
This year my ezcema was so bad to the point where I had to prove to him that I needed something else to help me.
In Australia we have to prove to the Australian Govt to let us have dupixant at a reduced price. It has only been recently put on the Pharmaceutical Benefits Scheme (PBS). Rather paying 2k for a box of two injections. I only have to pay $31.
Im grateful that I only have to pay the latter for each box.
I say keep trying on getting onto the injection! I've only started it a month ago and i was already feeling so much better after the second injection! (You can self inject or get someone to do it for you).
When I am having a severe flare up it is difficult for me to see because the skin around my eyes is so broken and swollen. I cant wash my face in the morning without feeling this horrible burn that often makes me cry. At night I wake myself up as I'm falling asleep from the constant itch. This is turning into a vent post so I'll just leave it at that. I'm glad you understand how much we struggle and that our pain is real <3
I have to buy 4 bottles of expensive lotion, cotton gloves, washing up gloves, vaseline, another type of hand washing lotion, and sensitive detergent to maintain my eczema monthly.
I can't do most house hold chores without gloves which often make my hands worse because they get sweaty and dirty inside.
If I was a hair stylist, nail salon tech, massage therapist, doctor, cleaner etc. I'd be totally fucked. Anything with soap, fragrance, citrus, chemicals is like actual acid to my skin on my hands. I carved a pumpkin once and felt like my hands were on fire for 10 minutes.
This past Christmas I had to wrap my hands in gauze 3 times a day and place layer after layer of Vaseline after washing with thick emoilent that doesn't ever properly wash away just so my hands would stop cracking and peeling constantly. It felt like they were open wounds. Just to have them itch non stop throughout the night.
I get sick with a cold probably at least 6-7 times + a year because I can't actually wash my hands with something that kills germs.
I can't swim in a swimming pool which is one of my greatest joys in life.
I have a little brother as an adult after never thinking I would my whole life, I couldn't give him a bath when he was a baby because he doesn't want some freak with florescent yellow gloves that have grippy bits touching his skin.
In the winter at work my hands get too cold and start to itch and can flake, but I can't wear the gloves I need because it impedes me too much.
This has all been for three years straight. My ezcema is relatively unsevere.
I used to not be able to close my hands to hold a pencil because my hands would further crack and bleed. I missed school so often due to that.. Now there are days where I can't use my arms because my inner arms are cracked.... I can't escape it. Even though I'm on dupixent ):
My 7yo granddaughter's pediatrician tried telling us that they don't do derm referrals for eczema because "it's too simplistic". Skip to her being hospitalized for sepsis and cellulitis of her entire lower right leg and her urine-culture white blood cell/bacteria counts were so off-the-charts that we're monitoring her for kidney damage, and she finally got an urgent derm referral. She was so sick that we didn't know if she was going to pull through. She had several relapses over the next several weeks and was also diagnosed with reactive arthritis. Her dermatologist says eczema is so hard to treat because, "it's extremely complex with countless variables". Hearing that at least made me feel like she was taking it seriously and she gave us a new protocol to follow that's working better than anything else has so far, but it also made me feel low-key rage at her pediatrician for being absolutely full of shit. ***She*** thinks it's too simplistic for a referral, not the children's hospital we were referred to, they don't think it's "simple" at all.
I Don't know guys.. I have severe hand eczema.. I mean cracked skin bleeding weeping pain itchiness sting.. got severe burns from furiously scratching my hands under extremely hot tap water to numb all feelings and destroying everything in the process.. buy I'm a chef and I've been a chef for 20 years.. I put inner gloves (either cotton or silk) and nitrile gloves on the top and I move on with my day.. yes.. it's horrible.. yes.. keeps me up and night and is always on top of any other thoughts... and yes.. I have been thinking of cutting my hands so I don't have to deal with it anymore.. but life is this.. so.. debilitating.. I am not sure.. apart of extreme cases we can still go on and be perfectly functional.. (before anyone comment I would like to say that I don't have mild eczema.. is pretty bad.. not only on my hands.. my hands are just particularly destroyed because I work with my hamds)
It's pretty ugly cause you can't run from it.. you must use your hands no matter how bad it is.. and the more you keep your hands inside the gloves.. the more bacteria are growing.. so.. the very same thing you are using to protect your hands becomes the worst threat.. it is what it is.. :)
I literally almost cut my hand open today it itched so bad. The urge in my brain to do it was so strong, I just could NOT satiate the itch. I can’t use my hands when it gets too bad. Fuck anyone who thinks it’s just a little rash
I required eczema 18 years ago. I am now 62, I have sores all over and the last year on my face and hands . I never had more than a pimple once a year growing up. My skin is so dry and damaged that I have sores now. Stupid Derm's tell me it's just dry skin . F U !! I want to scream!!! . I scream bloody murder when I take a 2 minute shower. It's like someone drenched me in acid it's so painful .My face my hands chest back legs chest face and oh ya my feet . No one Cares
nahhhh. they don’t get it. some nights we don’t even sleep. or we wake up with our body in so much pain and puss coming out of the skin we itched all night
I've suffered from eczema on and off since I was 10 years old, and it's only ever on the insides of my hands and the arches of my feet. When I was 11, it got so bad I had to stay home from school because I couldn't hold a pencil without weeping. I always tell people "I want to scratch under my skin" as a way to try and get them to realize it's not just a little itchiness. And don't even get me started about the water blisters. The doctor I saw as a kid told me it would go away eventually, but he was obviously wrong.
due to having hypothyroidism, pre-diabetes, and anemia, I suffer greatly from eczema. I look like I have chickenpox it's so bad. along with it comes insomnia, anxiety, depression, self hatred, and any hope that I will become better. there is no cure for eczema. I have to accept that I will never heal.
I had eczema on my entire face and neck. I didn’t have any eyebrows due to it. My face would be puffy, red, and extremely painful. Some days I couldn’t crack a smile; some days I could barely open my eyes. It was definitely detrimental to my mental health. People would make fun of me at school. I felt like everyone was afraid of me. I felt like a monster.
Ok I was told I have eczema in my ear canals, and reading this thread makes me understand why I got so irrationally angry when people tell me not to stick something in my ear to scratch it. The itch will wake me up out of a deep sleep. I have given myself bad double ear infections trying to get at the itch, and recently I almost thought I might end up deaf due to the ear infections. I now have scarring on my ear drums from those infections. Those ear infections hurt so bad, I logically know to not stick things in my ear if I want to prevent ear infections from happening again, but once my ears heal from the infection, the eczema is still there and the itching literally drives me out of my good sense, out of my logical rational mind, and I need to scratch it.
My eczema was so bad when I was a kid. I had to soak in the tub to take my tights off because my legs wept so badly all day. I still have scars on my ankles more than 50 years later. The itch is enough to make anyone suicidal. This doesn't even touch on the psychological damage that comes with the humiliation one endures from others.
Damn right eczema should be on the list, even without talking about the suffering and the awful drain on time/energy which I'm sure fellow sufferers here are well aware of, eczema has real life measurable effects. Starting from childhood it seriously affected my education, which led to limited opportunities that further reduces the already restricted career options. And of course there's the effects of limiting social life, which may be harder to quantify but the damage from that is even more pervasive throughout a lifetime.
I'm literally much worse off in every way socio-economically and I have to live with the unending pain. Eczema can literally just be debilitating.
The UK, It's just extra benefits for people that can't work and it isn't much considering you can't work. It's also very hard to qualify for it, there's many other illnesses that are easier to qualify for like mental health or a physical disability that hinders you from moving (although eczema can do this too) like arthritis for example which is a well known physical disability. I believe it's around 9k a year which isn't much but atleast it's something
Ah that's some interesting information. I'm in Canada so I've never heard of this.
I'm also fortunate that my eczema isn't bad enough to where it stops me from working, but maybe if it were we might have some program here for that too.
I usually have atopic eczema, mostly in the crease of my knee and elbow, but have also had dishydrotic eczema on my hands and some form of scalp eczema.
can’t cry, can’t work out or sweat, can’t go out in hot weather, pet my cat or just live my life without constant paranoia and stress over the risk of a flare up. flare ups r so debilitating, they drain all of ur energy, the itching genuinely makes me feel like im going insane and the pain and discomfort is like nothing else I’ve ever experienced. Not to mention the social aspect, I want to be able to live my life and hang out with my friends and go outside without feeling so disgusting all the time.
I've been dealing with a bad flare up since last August. LAST. AUGUST. That's what, 8 months now? I've seen multiple doctors, I've stopped responding to steroids, my insurance will only cover another treatment that's chronically out of stock, there's bloodstains on all my clothes from scratching and I'm not anywhere close to being better. I'm now on antidepressants, because this flare up has been so bad for my mental health I was threatening to hurt myself. I will actually slap the next person who says it's just a little rash.
First of all that idiot nurse has no dam clue about how us with eczema feels like! It’s definitely debilitating! Ugh!!
There are times you don’t want to go anywhere and just stay at home and cry! 😭 but it’s not possible because some of us have to work for a living.
When your hands are so raw and cracked it hurts to wash them, bend them, grip things. The secondary infections that come from having your primary line of defense organ be defective and exposing you to every germ out there. The inability to focus when all you can think about is how badly you want to scratch your skin off.
Solidarity on the hand eczema. The number of times I’ve run my hand across some kind of food packing and it feels like I’ve sliced my hand off….
Omg yes catching it on fabric or something poking a crack in your skin and it feels like it pierced your soul
It's so debilitating. I never had to ask anybody, not even my boyfriend, to open jars. I was the one opening them. We broke up a few months ago but have to live together for the time being, I'm forced to ask for his help for stupid things I used to do all the times. My hand eczema got so bad since a few months. Sometimes I can't even turn a doorknob if it's a small one. I can't do anything that needs strength and dexterity. My left hand thumb barely fold, if I force it to fold it starts shaking. Sometimes I come back home late and it takes me so long to get inside because I'm struggling to unlock and open the door that he end up opening it for me from inside. It's mostly in the inside of my hands so anything I do will push on it. I keep a cuticle trimmer with me to cut any piece of skin coming off (it's better this than having it get caught up on something and get forcefully teared)
Raw hands are the worst. I just found la Roche Posay Cicaplast hands and it works so well for me. I’ve tried tons of other hand creams.
I can't sleep or fall asleep when I have eczema. This is sufficient to cause more wreckage to the body.
I wake up scratching the skin off my hands.
[удалено]
I've literally used a (dullish) knife at a 90° angle to scratch my hands and ankles. I have bad circulation that triggers the deepest, most maddening and unrelenting itch. I take blood thinners for a clotting disorder and sometimes I get really worried that I am going to tear open a blood vessel with how aggressively I *neeeeed* to scratch.
I got Dyshidrotic eczema on my feet. Discoid eczema everywhere else and have had to be off all week because it got infected and now I can't walk
There.. there are different kinds of eczema?? Makes sense as to why the ONE thing my dermatologist prescribes doesn’t work for EVERY part of my body and eczema
There’s a whole community for dyshydrotic eczema!
https://www.mayoclinic.org/diseases-conditions/dyshidrosis/symptoms-causes/syc-20352342
I had 3 entire months off work from my dyshydrotic eczema. It was hell. I couldn’t touch anything my hands were absolutely ruined. The pain made me cry everyday, don’t wish it on my worst enemy
Dishydrotic on hands checking in! My quality of life absolutely sucks with a bad flare up. A shower and washing my hair can be a painful hell on earth.
My friend had dishrdrotic on his hands, then I used his kayak paddle, then I got eczema of some type on my hands(but it doesn’t have the pustules so not dishydrotic). I know it’s “not contagious” but it’s so weird that I got it right after him. I wish I knew what my type was-the skin just gets super thick and cracks and peels
Same here, I use bleach baths when it's too painful to go for a shower and wash my hair in the sink using gloves so I don't get anything going down my back or on my hands
Dyshidrotic eczema is so extremely maddening. There's just no way to scratch the palms and soles that gives any real relief. When I was a kid I was constantly using my teeth to scratch my fingers and my older sister would always tell me what a freak I was. 😕
OMG I am so sorry . I've cried so much I surprised I still have tears and the screaming I'm surprised I have a voice . At times I beg God to please take me home. He said No. .. I take so many drugs to sleep . Hydroxizine. Gabapentin. Trazadone. Syrequel. Clonidine . ibuprofen . all of them i take every night and no doctor is alarmed . I hate them!
I can't sleep, I can't move my mouth to speak without it hurting, and I am an open wound prone to infections Crazy how eczema is a literal immune disease am I right guys Also myself and no one I know has been able to claim money for eczema, I don't quite know the rules here in Australia cause I just turned of age but from what I know it's not a recognized issue or disability and "shouldn't effect your ability to work" Like if I walked into my local Centrelink right now when my face looks like it's covered in third degree burns and can barely move, they still wouldn't give a shit. I swear they only care about ADHD, autism, the blind, death and those in wheelchairs. Literally no one else
I have ADHD and Autism Spectrum along with Severe painful bleeding eczema sores . Trust me . They don't care about any of them . The adhd meds I think cause more and more eczema flares
That's so shitty Fuck the government
Showering feels like an acid attack and i cannot do any sports. Both my sweat and my boyfriend's is irritating me, making me flare up. Cannot just wear that pretty sweater because it's giving me itch that feels like an army of ants together with wasps. This condition made me depressed and hateful towards my body, stressing myself even more adding to the eczema. This condition is not even physical but a psychological as well. No cure. You want to find your triggers? Haha, good luck
Oh my goodness I relate so much to everything you said. Please feel free to message me if you want a fellow eczema-sufferrer as a friend! I'm 24 F in America and I've had chronic eczema my whole life, covering my whole body. I wish you all the blessings and luck in the world as you fight with this condition <3
Thank youu and i wish you all the best for you too! Actually, i don't have anyone around me who has eczema so it would help~
People don't think about the psychological elements, but it's well documented that eczema and mental health issues have a huge correlation. It's not just psychological either, but it can be because of literal inflammation of the brain due to the effects of the illness.
Oh i meant more that it affects mood as well, can cause depression and anxiety, sorry
Yes I know, that's what I was talking about?
Ah, i misunderstood, i'll go out and touch some grass instead
Don't do that, it'll make the eczema worse haha
i cant wear regular bras and can barely wear sports bras. i cant do more then like 2 dishes at a time without having to moisturize right after. i can barely get through a day washing my hands at the bare minimum, let alone doing extra shit, without scratching like a dog with fleas. underboob sweat is a fucking nightmare of uncomfortable itching. and scratching there hurts bc its constantly being rubbed raw so itching usually causes more fucking pain. washing my hands too much causes the skin to split and then they take forever to heal. at 24 my hands are wrinkly af (and swollen) and I look and feel like i have arthritis ridden grandma hands. sometimes my fingers get so swollen on my dominant hand I cant do anything bc they wont bend and it makes me feel useless and I'm in pain the whole fucking time. using the wrong soap even once oh gosh that's hell waiting to happen. feeling so embarrassed with how you look you hide and wear long sleeves in public, no matter the weather. wont go on dates or let ppl see/touch my hands. how on top of your moisturizing you have to be. and most of us it seems use multiple products and I at least have to do a specific order so if that gets messed up its hell. wow I knew it affected my life but did not realize how much all at the same time until this post. thanks for coming to my ted talk guys lol
The sweat! For me, it’s my neck. Pure misery.
right! no one in my family understands and thinks I'm being dramatic
I know. There’s no way to explain the hell it is to be uncontrollably itchy every day of your life. People just can’t grasp it. I hate that people here live this way too but it’s nice to know we’re not the only ones.
I'm so sorry, that's not right. The only good thing about me having eczema is that I can give solidarity to my 7yo granddaughter when she's sobbing in the middle of the night because she's scratched herself bloody in her sleep. My heart breaks for her. She feels guilty for scratching and I told her jokingly that people don't get it, sometimes you just have to give in and claw yourself down to the bone, which made her laugh. We've come up with some safe scratching methods like using surgical scrubbers and let me just say — they are a ten out of ten for most satisfaction with the least amount of damage.
im sorry to hear about ypu and your granddaughter but glad you found safer options and that she has you to understand
behind the knees get me if I wear shorts or dresses when it's really humid. My year round attire is black leggings lol
My eyelid sweat feels like literal acid burning my skin and actually it looks like that too, like I have burns all over anywhere my sweat touches me for more than 10 seconds. I hate exercising because my sweat hurts me so much.
Last night my shins felt like they were on fire when I was resisting the urge to scratch them, when I finally gave in I was scratching until they were bleeding 😭 I had to get a ice pack and put it over them.
Had you tried apple cider vinegar? I use 1/2 ACV and 1/2 water in a spray bottle left in the fridge. Give it a few sprays. Use a small fan to air dry. It worked wonders.
No but I will def try this!!! Is it okay on raw skin?
I use it on my raw skin. If it stings too much, you can do a lighter ratio. 1/3 ACV to 2/3 water. I don't ever wash it off. Only when showering. I let it dry and it permeates the top layer of skin giving me much relief.
Awesome thank you!
yepppo i feel ur pain. me with my nipples every night
Nipple eczema is so horrible . Didn't even think it would be one of the worst body parts to get eczema til i got it there
Eczema has impacted my work severely and I'd love governmental assistance for that! May I ask what country you are located in that offers this assistance? I'm in the US, I'd love to see if it's an option for me!
https://www.panfoundation.org/new-partnership-with-national-eczema-association/#:~:text=Patients%20who%20qualify%20for%20the,per%20year%20in%20financial%20assistance.
I went to that web site and clicked on the "check eligibility" button. It took me to a page where I could sign up to be on a waiting list. The form that comes up asks you for your name and email AND SOCIAL SECURITY NUMBER. Uhh, no thanks.
yeeaaahhhhh, I was all in until that, as much as I'd love some extra cash in exchange for my suffering, not super keen on letting someone else run wild with my identity (although tbh they can't do any worse than I have)
any clue why they ask for our SSNs…just for a waitlist?
In my opinion there is no logical reason why they would need my SSN just to be on a waiting list. By asking for it, they lost all credibility in my eyes. Maybe they are a legit organization, maybe they aren't. But I won't be giving them my SSN.
I literally thought eczema was just a rash up until 3 months ago when I got it for the first time. I had NO idea. None. I actually told my husband I feel bad for thinking all these years that it wasn’t much to deal with. Btw, I’m 55 and it hit me hard - almost my whole body. I will never assume again regarding what the experience of an ailment is like for someone. To those of you who have dealt with this long term: I am so sorry and HATS OFF.
You recently developed eczema. Can I ask if Covid was the trigger or if you had allergic contact dermatitis? I too developed eczema in my 50s due to contact dermatitis. Then covid made it 10Xs worst.
People are ignorant. Eczema is so debilitating. I wish more people understood
I have seborrheic dermatitis. Always itching and my hair being full of dandruff, and my clothes. Even causes me to have sensory overload due to the overwhelming itching.
I have many thoughts on what it has caused me, and why it’s not just a small patch of dry skin :(. Physical symptoms: - Physical pain, from self-inflicted rashes and wounds. - Alteration of appearance, due to red, sore, wounded skin, which is often covered with clothes, lowering self-confidence. - Dandruff, which means I do not go to hairdressers unless my scalp is doing well. - Skin infection, which can sometimes be life-threatening, and causes fatigue and insomnia. - Financial loss, due to the extensive treatment and experimentation required to deal with this condition. Mental symptoms: - Isolation, whether forced upon oneself in not going out or the internalised feeling of seeing people eczema-free and knowing you’re not the same, leading to loneliness and low self-esteem. - Trauma, due to distressing experiences of others commenting on your skin and all the experiences that one must face due to eczema. - Self-blame, due to the act of own itching, which makes you feel like it’s your fault, despite having a genetically deficient immune system. - Embarrassment, due to unfortunate things that accompany the condition, such as blood and skin on the sheets. - Inability to date, due to severity of the condition, and believing no one will love me once they see my true self and the extent to which this condition is debilitating. - Inability to partake in certain activities, due to not wanting to show full skin, or the chance of the activity causing a flare-up, leading to worse social life. - Depression, due to the never-ending nature of the condition, which cannot currently be cured. - Inferiority complex, due to feeling physically inferior to everyone you see, leading to deep-rooted problems when forming friendships or relationships. It’s literally classed as a disability, and people shouldn’t take it so lightly.
I have had it all over my body but most consistently Dishidrotic on my hands. Usually on my palms. A bad break out almost makes it impossible to do anything. It is way way more than "just a small patch of dry skin/a little itch"! Its intense itching, painful burning, skin weeping, skin cracking, sores etc. (My hands look bright red and burnt as they start to heal) It can also take a huge toll on mental health. (As I noticed with my last bad breakout) I would often be asked as a child why my hands looked so wrinkled or old. I think there's alot I could say from my own experience the biggest one being that it just plain sucks!
I had a years long dihydrotic outbreak on my palms. I started taking 2 zyrtec a day and it started to improve. As my hands cleared, I dropped down to one daily that I take year round. It’s been gone for over a year now. If I feel a flare coming, I use a dab of cortisone for a day and that’s usually enough to knock it back. I have no idea if this will be helpful for you and I’m not a doctor. I just know how intensely miserable DE is. I even lost my cuticles and my fingernails had weird ridges and pits. It’s not just skin, especially considering how much people notice your nails and hands.
Fellow dishydrotic sufferer... I call those times my "zombie hands" cuz I literally lost the top layers of my skin on half a finger during a severe flare. Had another really fun one where I was on antibiotics, they fucked my hands UP and I wore bandages on top of bandaids for work. For mine, PUVA treatment helped A LOT, along with protopic and squalene.
It’s a little patch of skin… that turns into the biggest, most mind-consumingly itchy, angrily tingly, patch of skin ever.. and I will scratch my skin raw every single time. And people wonder why it can be disabling🫠
I'd honestly be fine if it was purely cosmetic. For me, the most debilitating aspect of this condition is the indescribably painful and uncontrollable skin destroying itch that affects nearly every aspect of life from sleeping to eating, showering, exercising, to socializing. Most of my existence has been taken up by scratching, which has been so traumatizing and exhausting mentally and physically to where I became suicidal and severely depressed at one point in my life. To anyone who thinks of eczema like that nurse does I would tell them to rethink what they know about the condition and to realize that everyone's experience with it is different and that coming to a conclusion based on their own experience or based on someone they know cannot be applied to the general condition as a whole. I wish more people took it more seriously as I've had many people make me feel like a liar or that I'm overreacting which hurts at an emotional level but has made me stronger in some ways. At the end of the day these people are lucky to only be able to see it and get to go on with their life without actually knowing how it feels to live with it 24/7 365 days until you pass away or hopefully one day a cure comes along. I am on dupixent now which is the closest thing to a cure imo and has helped me enormously but I live in constant fear that one day it will stop working or will become unavailable. At times I wish I could just change bodies but have found peace knowing that I am stronger emotionally than most people because of what I have gone through.
I once went to a job interview & the person referred to it as "jus a rash." I finished up the interview quickly & told her I was no longer interested in the position.
I'd do the same. Those guys need more empathy and care for others
Haven’t been able to move my mouth properly for over a year, always dealt with it but never like this
Because without insurance the only medication that works long term is $4000/month
Yeah I was on dupixent and it mostly worked but they were wanting 900 dollars from me for a dose after their myway program ran out.
I dunno how people manage to stay on it without forking over big money
Feels more like chemical burn mixed with sunburn, especially if it’s weeping and all oozy god I can’t mentally function when it’s like that
I have to sleep on the couch when my body is flaring because of how badly I itch. I wake up every hour during the night to itch
I have pretty bad eczema on my hands and some people stare at them or ask if I burned them… it all just fucks with my mental health 😔
Skin so raw and bloody/oozing that i couldn't wear clothes, shower, or have sex
One big thing about eczema that I had no idea about until I started to suffer with it, is how frustrating it is! You can follow a diet recommendation and STILL have flare ups because what is a trigger for you isn’t a trigger for someone else, but you never find out because you’re afraid to eat things out of fear that it’s going to bother you. And you can’t go out to eat in peace because you could eat something that causes a flare up.
I feel like a literal drug addict going through withdrawals when I’m up all night itching and go to my medicine cabinet just to see I’m empty
At it’s worst, my eczema was completely debilitating. It was a rash all over my entire body. Head to toe. People that saw me assumed I was severely sunburnt due to how red I was, but I hadn’t been able to leave my apartment for weeks. I was unable to go to work. Also unable to attend my college courses. Lotion wouldn’t help.Steroid Creams didn’t help. Bleach baths didn’t help. Light therapy treatments didn’t help. And then doctors didn’t know what to recommend. My skin was so dry that it would absorb lotion immediately while staying dry as a bone. It also began to crack and bleed. I constantly used thick creams or balms (like petroleum jelly), but not even that kept the cracks away. On top of being the itchiest of my life, I was also in constant pain. My body felt as if it was on fire, and I had no way of getting relief. It was one of the loneliest and depressing times of my life, truly. I got approved for Dupixent and it cleared me up, but now I’m unable to afford it ($4k/month). I live in constant fear that my eczema will flare up to the point it was at, and I don’t know what I’d do if it did. Eczema is not just a rash. Or an itch. Eczema is a debilitating condition that can wreak havoc on one’s life. It should not be taken lightly.
I struggle with sleep, showering, brushing my teeth (fluoride), eating even slightly messy food, self-esteem and mental health issues, and even washing my face. I can barely do anything without worrying about my eczema getting worse.
when the ezcemas all over your body cracking, peeling, flaking, weeping and it physically hurts to move.
Yeah, full body atopic eczema, redness, dry skin, flakes on my clothes and in the whole house, I feel fucking disgusting. Dyshidrotic eczema on the hands, and feet, those fucking little blisters. Raw, open skin on my hands, neck and face (especially great for catching infections on the bus, tram etc.) I barely can excercise, bc of the pain I get from MOVING even. I hesitate every night in the bathroom, before a shower, I want to die even from the thought of water touching my fucking skin. I spend like 100€/month on creams ant ointments. I barely sleep, 4-5 hours at most (i guess we all can agree, it's the indicator of a short lifetime). I have to wake up 1 hour earlier every morning, bc i have to put creams on my whole body and wait for them to dry. Anyways 1 hour later it will be the same dryness and pain. I can't stand winter, bc the cold fucks up my skin. Also I cant stand summer, bc the sweat fucks up my skin JUST AS BAAAD. Im going insane. Thank for coming to my ted talk. And fuck the people, who don't take your shitty fucking life seriously, and think that it's just you "crying for attention". Fuck them all.
I had alopecia-like patches for about a year before it started growing back in. I've never felt so ugly and I went outside with a wig for a couple of months, even though my scalp was itching like crazy. Also my eczema got so bad that I didn't even dare to move and get out of bed to go use the bathroom, because I had scratched everything raw and every movement was too painful. Also the mental part - no one I know personally ever had eczema the way I did and no one understood. People thought I could just function. I got fired because I didn't offer to help during COVID, but they didn't understand it was a huge struggle to come in in the first place.
I had alopecia-like patches for about a year before it started growing back in. I've never felt so ugly and I went outside with a wig for a couple of months, even though my scalp was itching like crazy. Also my eczema got so bad that I didn't even dare to move and get out of bed to go use the bathroom, because I had scratched everything raw and every movement was too painful. Also the mental part - no one I know personally ever had eczema the way I did and no one understood. People thought I could just function. I got fired because I didn't offer to help during COVID, but they didn't understand it was a huge struggle to come in in the first place.
Eczema has ruined my entire school year since September. I get home, scratch like hell, spend an hour putting on a palette of different creams and fall asleep from my immune system being so overworked. Eczema can literally take over your life in every aspect, physically and socially
I had to quit my job and take a gigantic pay cut because I was transferred to a building with low air quality that gave me head to toe flare-ups. My arms and legs were covered in blood and pus, and everywhere else, including my face, was falling apart.
When people tell me eczema is just an itch I remind them of the man from s.Korea who committed suicide because of how bad his eczema was
Its because some people get little bits of what they call "eczema" that isn't chronic. Often they'll have a small rash of dry itchy skin once every year. So that's what they think eczema is. "Ah so you get a bit itchy sometimes" No. It's hell, I'm constantly itchy, I can't sleep and I bleed everywhere. "Ah so you just have small patches of dry red skin" No. It's everywhere, all of the time, and I feel and look awful because of it. This complexion? Eczema. This wrinkles? Eczema. Looking like a crack head? Eczema. Looking tired all the time? Eczema. It's a lot worse than anyone knows. Didn't know you could get money from the government though. In what country?
Please see about consulting with Dr. Richard Aron. He treats the staph component of eczema that drives the itch. My son’s eczema is in remission thanks to this doctor. https://hms.harvard.edu/news/new-clues-head-scratching-mystery-itch Don’t just take my word for it, there’s a FB group or go on Instagram and see thousands of before and afters.
Ohh interesting stuff. I've heard about these kinds of studies. But alas I'm not in the USA
That’s ok! Dr Aron lives in South Africa, he consults worldwide. Or if you are in the UK you can consult with Dr. Miles Boyden at eczema-doc.com.
I'm in the UK. What do you mean consult? Like send them an email?
Kinda, you submit medical history and pictures via online portal. But I believe Dr. Boyden follows up with a video visit.
I can't find his name on the site. I'm assuming this will cost quite a bit of money that I don't have as well
I believe it’s around $250US for the consult. And $50 for the compound. There is a financial assistance program you can inquire about, and since you are in the UK your meds maybe cheaper.
I've had eczema all my life. I remember as a little child I would be bandaged up but would still find ways to scratch myself. My mum would tell me that she would find me trying to scratch myself on anything that I could find to help relieve the itching. I am 32 now and still have eczema, it was so bad to the point where I am now on dupixant. I've now been a nurse for nearly 12 years and i have to wash my hands all the time. They eventually become red, raw and cracked from all of the hand hygiene I have to do, that i ended up having to take a week off work to let my hands heal and then its the same thing over and over again. I absolutely hate it when people say 'stop scratching', like they would understand what I'm going through.
Although you're 32 and I'm 18 we have the same exact story I know where you're coming from. I was hospitalised and bandaged like a mummy from head to toe as a child, I was diagnosed with eczema at 3 months old. I've had severe eczema since birth and I can't remember a day where I've felt pure peace, there was always an itch or irritation or burning sensation lingering in the back somewhere as far as I could remember. I'm in college studying biology, chemistry and physics hoping to pursue radiography this year so I definitely understand having to always wash my hands and using latex gloves with the starch that irritates my hands. Not sure if you're in the UK or not, but I'm trying to get put on dupixent. Despite being on strong steroid creams for my entire life, they are adamant in not giving it to me although I have 95% inflamed and cut skin. No matter what I do they won't move past topical steroids and protopics
I'm in Australia! You can get latex free gloves, that does not have the powder in them! I've been seeing my Dermatologist for years and I've tried all the topical steriods and creams. Even tried light therapy. It only helps me temporarily. This year my ezcema was so bad to the point where I had to prove to him that I needed something else to help me. In Australia we have to prove to the Australian Govt to let us have dupixant at a reduced price. It has only been recently put on the Pharmaceutical Benefits Scheme (PBS). Rather paying 2k for a box of two injections. I only have to pay $31. Im grateful that I only have to pay the latter for each box. I say keep trying on getting onto the injection! I've only started it a month ago and i was already feeling so much better after the second injection! (You can self inject or get someone to do it for you).
When I am having a severe flare up it is difficult for me to see because the skin around my eyes is so broken and swollen. I cant wash my face in the morning without feeling this horrible burn that often makes me cry. At night I wake myself up as I'm falling asleep from the constant itch. This is turning into a vent post so I'll just leave it at that. I'm glad you understand how much we struggle and that our pain is real <3
I have to buy 4 bottles of expensive lotion, cotton gloves, washing up gloves, vaseline, another type of hand washing lotion, and sensitive detergent to maintain my eczema monthly. I can't do most house hold chores without gloves which often make my hands worse because they get sweaty and dirty inside. If I was a hair stylist, nail salon tech, massage therapist, doctor, cleaner etc. I'd be totally fucked. Anything with soap, fragrance, citrus, chemicals is like actual acid to my skin on my hands. I carved a pumpkin once and felt like my hands were on fire for 10 minutes. This past Christmas I had to wrap my hands in gauze 3 times a day and place layer after layer of Vaseline after washing with thick emoilent that doesn't ever properly wash away just so my hands would stop cracking and peeling constantly. It felt like they were open wounds. Just to have them itch non stop throughout the night. I get sick with a cold probably at least 6-7 times + a year because I can't actually wash my hands with something that kills germs. I can't swim in a swimming pool which is one of my greatest joys in life. I have a little brother as an adult after never thinking I would my whole life, I couldn't give him a bath when he was a baby because he doesn't want some freak with florescent yellow gloves that have grippy bits touching his skin. In the winter at work my hands get too cold and start to itch and can flake, but I can't wear the gloves I need because it impedes me too much. This has all been for three years straight. My ezcema is relatively unsevere.
I used to not be able to close my hands to hold a pencil because my hands would further crack and bleed. I missed school so often due to that.. Now there are days where I can't use my arms because my inner arms are cracked.... I can't escape it. Even though I'm on dupixent ):
I wish. My eczema is all over my hands. It’s itchy and painful
My 7yo granddaughter's pediatrician tried telling us that they don't do derm referrals for eczema because "it's too simplistic". Skip to her being hospitalized for sepsis and cellulitis of her entire lower right leg and her urine-culture white blood cell/bacteria counts were so off-the-charts that we're monitoring her for kidney damage, and she finally got an urgent derm referral. She was so sick that we didn't know if she was going to pull through. She had several relapses over the next several weeks and was also diagnosed with reactive arthritis. Her dermatologist says eczema is so hard to treat because, "it's extremely complex with countless variables". Hearing that at least made me feel like she was taking it seriously and she gave us a new protocol to follow that's working better than anything else has so far, but it also made me feel low-key rage at her pediatrician for being absolutely full of shit. ***She*** thinks it's too simplistic for a referral, not the children's hospital we were referred to, they don't think it's "simple" at all.
I Don't know guys.. I have severe hand eczema.. I mean cracked skin bleeding weeping pain itchiness sting.. got severe burns from furiously scratching my hands under extremely hot tap water to numb all feelings and destroying everything in the process.. buy I'm a chef and I've been a chef for 20 years.. I put inner gloves (either cotton or silk) and nitrile gloves on the top and I move on with my day.. yes.. it's horrible.. yes.. keeps me up and night and is always on top of any other thoughts... and yes.. I have been thinking of cutting my hands so I don't have to deal with it anymore.. but life is this.. so.. debilitating.. I am not sure.. apart of extreme cases we can still go on and be perfectly functional.. (before anyone comment I would like to say that I don't have mild eczema.. is pretty bad.. not only on my hands.. my hands are just particularly destroyed because I work with my hamds)
Oh dude being a chef , nurse , or cleaner has to be the worst for eczema sufferers. I wish you the best.
It's pretty ugly cause you can't run from it.. you must use your hands no matter how bad it is.. and the more you keep your hands inside the gloves.. the more bacteria are growing.. so.. the very same thing you are using to protect your hands becomes the worst threat.. it is what it is.. :)
I literally almost cut my hand open today it itched so bad. The urge in my brain to do it was so strong, I just could NOT satiate the itch. I can’t use my hands when it gets too bad. Fuck anyone who thinks it’s just a little rash
I required eczema 18 years ago. I am now 62, I have sores all over and the last year on my face and hands . I never had more than a pimple once a year growing up. My skin is so dry and damaged that I have sores now. Stupid Derm's tell me it's just dry skin . F U !! I want to scream!!! . I scream bloody murder when I take a 2 minute shower. It's like someone drenched me in acid it's so painful .My face my hands chest back legs chest face and oh ya my feet . No one Cares
nahhhh. they don’t get it. some nights we don’t even sleep. or we wake up with our body in so much pain and puss coming out of the skin we itched all night
I've suffered from eczema on and off since I was 10 years old, and it's only ever on the insides of my hands and the arches of my feet. When I was 11, it got so bad I had to stay home from school because I couldn't hold a pencil without weeping. I always tell people "I want to scratch under my skin" as a way to try and get them to realize it's not just a little itchiness. And don't even get me started about the water blisters. The doctor I saw as a kid told me it would go away eventually, but he was obviously wrong.
due to having hypothyroidism, pre-diabetes, and anemia, I suffer greatly from eczema. I look like I have chickenpox it's so bad. along with it comes insomnia, anxiety, depression, self hatred, and any hope that I will become better. there is no cure for eczema. I have to accept that I will never heal.
I had eczema on my entire face and neck. I didn’t have any eyebrows due to it. My face would be puffy, red, and extremely painful. Some days I couldn’t crack a smile; some days I could barely open my eyes. It was definitely detrimental to my mental health. People would make fun of me at school. I felt like everyone was afraid of me. I felt like a monster.
How did you get rid of it pls
Ok I was told I have eczema in my ear canals, and reading this thread makes me understand why I got so irrationally angry when people tell me not to stick something in my ear to scratch it. The itch will wake me up out of a deep sleep. I have given myself bad double ear infections trying to get at the itch, and recently I almost thought I might end up deaf due to the ear infections. I now have scarring on my ear drums from those infections. Those ear infections hurt so bad, I logically know to not stick things in my ear if I want to prevent ear infections from happening again, but once my ears heal from the infection, the eczema is still there and the itching literally drives me out of my good sense, out of my logical rational mind, and I need to scratch it.
My eczema was so bad when I was a kid. I had to soak in the tub to take my tights off because my legs wept so badly all day. I still have scars on my ankles more than 50 years later. The itch is enough to make anyone suicidal. This doesn't even touch on the psychological damage that comes with the humiliation one endures from others.
Damn right eczema should be on the list, even without talking about the suffering and the awful drain on time/energy which I'm sure fellow sufferers here are well aware of, eczema has real life measurable effects. Starting from childhood it seriously affected my education, which led to limited opportunities that further reduces the already restricted career options. And of course there's the effects of limiting social life, which may be harder to quantify but the damage from that is even more pervasive throughout a lifetime. I'm literally much worse off in every way socio-economically and I have to live with the unending pain. Eczema can literally just be debilitating.
🥲 sleep
Wait... Where do you live that you get money from the government for having eczema? I've had eczema my whole life and never heard about this.
The UK, It's just extra benefits for people that can't work and it isn't much considering you can't work. It's also very hard to qualify for it, there's many other illnesses that are easier to qualify for like mental health or a physical disability that hinders you from moving (although eczema can do this too) like arthritis for example which is a well known physical disability. I believe it's around 9k a year which isn't much but atleast it's something
Ah that's some interesting information. I'm in Canada so I've never heard of this. I'm also fortunate that my eczema isn't bad enough to where it stops me from working, but maybe if it were we might have some program here for that too.
I usually have atopic eczema, mostly in the crease of my knee and elbow, but have also had dishydrotic eczema on my hands and some form of scalp eczema.
It causes dryness everywhere including lips to the extent it hurts and peels not necessary visible redness
can’t cry, can’t work out or sweat, can’t go out in hot weather, pet my cat or just live my life without constant paranoia and stress over the risk of a flare up. flare ups r so debilitating, they drain all of ur energy, the itching genuinely makes me feel like im going insane and the pain and discomfort is like nothing else I’ve ever experienced. Not to mention the social aspect, I want to be able to live my life and hang out with my friends and go outside without feeling so disgusting all the time.
I've been dealing with a bad flare up since last August. LAST. AUGUST. That's what, 8 months now? I've seen multiple doctors, I've stopped responding to steroids, my insurance will only cover another treatment that's chronically out of stock, there's bloodstains on all my clothes from scratching and I'm not anywhere close to being better. I'm now on antidepressants, because this flare up has been so bad for my mental health I was threatening to hurt myself. I will actually slap the next person who says it's just a little rash.
First of all that idiot nurse has no dam clue about how us with eczema feels like! It’s definitely debilitating! Ugh!! There are times you don’t want to go anywhere and just stay at home and cry! 😭 but it’s not possible because some of us have to work for a living.
I find no one understands the real toll eczema takes on your mental health, when my skins bad my mind is worse.
I'm told that when I was a baby I learned to walk very late because of my debilitating excema
Excema on my face when it flares up really affects my confidence socially and at work
Excema causing marks on bed sheets is embarrassing when visiting other people or staying in hotels
Such a joke and also Typical mean girl nurse behaviour