At the end of my itchy rope
June 11, 2014 8:13 AM Subscribe
As an eczema sufferer, how can I stop scratching in my sleep and give my raw, battered skin time to heal?
I've had eczema since I was a toddler. Over the years, it's been in various stages of severity- right now probably being the most severe it's ever been.
I've had many recent episodes of rebound eczema after being off topical steroids, so I've discontinued my use of all steroids. I was using a very potent cream most recently, clobetasol propionate. Right now I'm hydrating my skin with Mustela Stelatopia (a cream intended for babies with eczema) and CeraVe, and using topical diphenhydramine to relieve severe itching. I'm trying not to use too many products that are new, or going too nuts trying multiple things, in an attempt to calm my skin.
My main problem right now is that my face and neck and upper arms are really getting the brunt of this flare (though the rest of my body all has active patches), and I scratch in my sleep. I've tried Benadryl, wearing gloves, wearing mittens, wearing oven mitts attached to a long sleeve shirt. The problem is, I've been using the gloves/etc to rub against my face and neck to relieve the itch, since my fingers can't get to it. The friction is killing my skin, leaving it red, sore, and swollen.
Short of handcuffing myself to the bed, I can't think of any method that will be comfortable enough to let me sleep, but not let me itch or rub at my raw skin.
I'm averaging 2-4 hours of sleep a night, and my quality of life as well as my performance at work is dropping dramatically.
Other things I'm trying right now: phototherapy (seems to have helped a tiny bit, nothing great yet), cold packs on hot itchy skin, mild diet, cool temperatures, wet wrap therapy.
My doctor is basically at her wits' end as well and has offered more steroids, but I declined. I am at least 3 weeks away from seeing a new dermatologist.
Help?
I've had eczema since I was a toddler. Over the years, it's been in various stages of severity- right now probably being the most severe it's ever been.
I've had many recent episodes of rebound eczema after being off topical steroids, so I've discontinued my use of all steroids. I was using a very potent cream most recently, clobetasol propionate. Right now I'm hydrating my skin with Mustela Stelatopia (a cream intended for babies with eczema) and CeraVe, and using topical diphenhydramine to relieve severe itching. I'm trying not to use too many products that are new, or going too nuts trying multiple things, in an attempt to calm my skin.
My main problem right now is that my face and neck and upper arms are really getting the brunt of this flare (though the rest of my body all has active patches), and I scratch in my sleep. I've tried Benadryl, wearing gloves, wearing mittens, wearing oven mitts attached to a long sleeve shirt. The problem is, I've been using the gloves/etc to rub against my face and neck to relieve the itch, since my fingers can't get to it. The friction is killing my skin, leaving it red, sore, and swollen.
Short of handcuffing myself to the bed, I can't think of any method that will be comfortable enough to let me sleep, but not let me itch or rub at my raw skin.
I'm averaging 2-4 hours of sleep a night, and my quality of life as well as my performance at work is dropping dramatically.
Other things I'm trying right now: phototherapy (seems to have helped a tiny bit, nothing great yet), cold packs on hot itchy skin, mild diet, cool temperatures, wet wrap therapy.
My doctor is basically at her wits' end as well and has offered more steroids, but I declined. I am at least 3 weeks away from seeing a new dermatologist.
Help?
It's pretty "woo" and I don't personally know anything about it beyond its existence but if you have nothing to lose why not try hypnosis?
Also apparently skin psychologists and dermatology-psychiatry clinics are a real thing, albeit fringe right now. Possibly another avenue to try?
posted by Wretch729 at 8:28 AM on June 11, 2014
Also apparently skin psychologists and dermatology-psychiatry clinics are a real thing, albeit fringe right now. Possibly another avenue to try?
posted by Wretch729 at 8:28 AM on June 11, 2014
You say you're on a 'mild diet,' but what do you mean by that? And have you tried an elimination diet? You may have eczema secondary to a low-level food allergy. Which is to say, my kid gets wicked bad eczema from eating too much cow dairy. It's worth the attempt, anyway?
posted by Andrhia at 8:28 AM on June 11, 2014
posted by Andrhia at 8:28 AM on June 11, 2014
Would it help if you were sleeping more effectively? If you could give yourself 8+ hours of respite and time to heal each night (not to mention the mental benefits of a good night's sleep), that seems like it could help.
Melatonin works really well to keep me asleep and immobilized through the night, but maybe your doctor can recommend Ambien or some other prescription sleep aid.
posted by magdalemon at 8:28 AM on June 11, 2014
Melatonin works really well to keep me asleep and immobilized through the night, but maybe your doctor can recommend Ambien or some other prescription sleep aid.
posted by magdalemon at 8:28 AM on June 11, 2014
One other thing: my eczema went nuts this year in conjunction with hay fever/spring allergies. A mild antihistamine (store brand Claritin) helped clear things up.
posted by magdalemon at 8:29 AM on June 11, 2014
posted by magdalemon at 8:29 AM on June 11, 2014
Response by poster: Homemade straitjacket might work, though I've been known to wriggle out of almost any garment.
Mild diet meaning no spicy food, nothing really wheaty or acidic. Kind of bland. I know it's not an elimination diet, but I've been tested for food allergies and nothing came up. Since I love food, I've been putting off a true elimination diet, but it may be time for that.
Melatonin could be worth a try, thanks.
I do use 180mg of Claritin daily, forgot to mention that. Have not seen improvement in the month or so I've been on it.
I'll try to refrain from stepping back in unless necessary.
posted by rachaelfaith at 8:33 AM on June 11, 2014
Mild diet meaning no spicy food, nothing really wheaty or acidic. Kind of bland. I know it's not an elimination diet, but I've been tested for food allergies and nothing came up. Since I love food, I've been putting off a true elimination diet, but it may be time for that.
Melatonin could be worth a try, thanks.
I do use 180mg of Claritin daily, forgot to mention that. Have not seen improvement in the month or so I've been on it.
I'll try to refrain from stepping back in unless necessary.
posted by rachaelfaith at 8:33 AM on June 11, 2014
Would temporarily knocking out nerve feeling be an option/work? Gabapentin (sp?) I saw used on House for that. I know it's TV but I've also heard it prescribed to friends who have nerve/skin pain. Worth talking to your doc about.
posted by tilde at 8:36 AM on June 11, 2014
posted by tilde at 8:36 AM on June 11, 2014
It is by no means a solution for everyone, but my husband in desperation with his eczema went to an allergist, got tested, and was found to be allergic to a number of things. (We had noticed it seemed to worsen during spring allergy season.) He then went ahead and got allergy shots. His eczema is not gone after his allergy shots reached "maintenance" level, but has been diminished and is more controllable without more than topical creams, plus zyrtec during allergy season since he is no longer getting the shots at this point. His allergist was skeptical that this would help his eczema, but he was pretty desperate and it did turn out to help in his case.
posted by gudrun at 8:39 AM on June 11, 2014
posted by gudrun at 8:39 AM on June 11, 2014
Came back to add, some people are now trying bleach baths for eczema. Have you ever talked to your dermatologist about this? (I would not do it without talking to a doctor). Some info.
posted by gudrun at 8:44 AM on June 11, 2014
posted by gudrun at 8:44 AM on June 11, 2014
Best answer: I've had eczema for over 40 years, and it times it's been as bad as you describe.
I used to believe in the 'rebound effect', but I don't any more. I've come to understand that what's actually happening is that people stop applying the topical corticosteroids too soon. If you stop using them as soon as the skin looks 'clear', you'll still have an inflamed layer of skin underneath that will resurface a week or a month down the line. You need to continue applying the cream or ointment for at least a week after it looks healed. It's hard to remember to do that, but I've never had any 'rebound' since I learned about the need to extend the period of treatment.
Other things that work for me:
Wash bed linen every week in a mild, scent-free liquid detergent and no fabric softener.
Take a shower every night before bed, either with a very mild non-drying shower gel, or just water - this helps to remove any allergens from my skin, and stops me transferring them to my bed. Apply cream or ointment to any patches of eczmea between showering and going to bed.
If I wake up in the night feeling really itchy, I go and shower the affected area with cold water until it's numb, then go back to bed.
Got rid of my bedroom carpet; a bare floor is much easier to keep free of dust etc.
Things that don't work:
Allergy medication does nothing for me, really, except help with my hayfever and dust allergies.
Moisturising, oddly enough, generally irritates my skin. Instead, I use things like Diprobase or Doublebase Dayleve, which both add a protective layer to reduce drying-out.
posted by pipeski at 8:53 AM on June 11, 2014 [4 favorites]
I used to believe in the 'rebound effect', but I don't any more. I've come to understand that what's actually happening is that people stop applying the topical corticosteroids too soon. If you stop using them as soon as the skin looks 'clear', you'll still have an inflamed layer of skin underneath that will resurface a week or a month down the line. You need to continue applying the cream or ointment for at least a week after it looks healed. It's hard to remember to do that, but I've never had any 'rebound' since I learned about the need to extend the period of treatment.
Other things that work for me:
Wash bed linen every week in a mild, scent-free liquid detergent and no fabric softener.
Take a shower every night before bed, either with a very mild non-drying shower gel, or just water - this helps to remove any allergens from my skin, and stops me transferring them to my bed. Apply cream or ointment to any patches of eczmea between showering and going to bed.
If I wake up in the night feeling really itchy, I go and shower the affected area with cold water until it's numb, then go back to bed.
Got rid of my bedroom carpet; a bare floor is much easier to keep free of dust etc.
Things that don't work:
Allergy medication does nothing for me, really, except help with my hayfever and dust allergies.
Moisturising, oddly enough, generally irritates my skin. Instead, I use things like Diprobase or Doublebase Dayleve, which both add a protective layer to reduce drying-out.
posted by pipeski at 8:53 AM on June 11, 2014 [4 favorites]
Claratin (loratadine) doesn't do a damn thing for me -- it used to but it stopped working over time, and I've heard the same story from other people. I've switched to Zyrtec and it does a much better job. If you can make that switch, I'd consider it.
Supplemental magnesium is another option that can help sleep for some people.
How is your allergen control game? If you can wash your sheets/pillows/bedding and dry on hot, it may help remove dust mites. I know I pretty much have to use an air purifier this time of year to be able to sleep. I agree with pipeski's suggestion to shower before bed and get rid of the bedroom carpet (if possible).
If you haven't had allergen testing, or haven't had it recently, you could look into that, although I have no idea if they do scratch testing when someone has an active eczema flare. I had a major allergy fail from feathers only one year after a test that showed I wasn't allergic to them -- turns out you can develop allergies pretty quickly when you buy a nice feather mattress topper and comforter and start exposing yourself to them.
posted by pie ninja at 8:57 AM on June 11, 2014
Supplemental magnesium is another option that can help sleep for some people.
How is your allergen control game? If you can wash your sheets/pillows/bedding and dry on hot, it may help remove dust mites. I know I pretty much have to use an air purifier this time of year to be able to sleep. I agree with pipeski's suggestion to shower before bed and get rid of the bedroom carpet (if possible).
If you haven't had allergen testing, or haven't had it recently, you could look into that, although I have no idea if they do scratch testing when someone has an active eczema flare. I had a major allergy fail from feathers only one year after a test that showed I wasn't allergic to them -- turns out you can develop allergies pretty quickly when you buy a nice feather mattress topper and comforter and start exposing yourself to them.
posted by pie ninja at 8:57 AM on June 11, 2014
Response by poster: Unfortunately, I can't make any major changes to my living conditions, as I am a renter. I would love to have a water softening system, and only hardwood floors, but I am stuck with hard water (have an okay shower filter, doesn't do a lot) and a fully carpeted apartment. I do vacuum often, and I do have a HEPA air filter in my bedroom. I change my sheets about twice a week and I change my pillowcase more often than that. I also have an allergy/dust mite cover on my pillow.
posted by rachaelfaith at 9:02 AM on June 11, 2014
posted by rachaelfaith at 9:02 AM on June 11, 2014
Also, how's the temperature in your room? Keeping things on the cool side definitely helps my eczema.
posted by pipeski at 9:41 AM on June 11, 2014
posted by pipeski at 9:41 AM on June 11, 2014
[Sibling of a dermatologist & am a lifelong eczema sufferer] Traditional eczema treatment focuses on mitigating dryness and combating allergens. But I think now there's also more research on, for example, the relationship between eczema sufferers having naturally higher staph presences on their skin and active flareups - hence, bleach baths, which I recently discovered and highly recommend as long as your skin isn't broken. They sound scary but you make them more dilute than pool water which is also essentially a bleach bath. Another path of treatment that I've heard doctors are exploring is SSRIs for night itching.
posted by sestaaak at 10:39 AM on June 11, 2014 [1 favorite]
posted by sestaaak at 10:39 AM on June 11, 2014 [1 favorite]
I'm a nose doc, so I don't know a ton about skin. BUT...
(1) Consider seeing an allergist instead of another dermatologist if you can afford it. Immunotherapy (allergy shots or drops under the tongue) can target specific allergens and desensitize you. And the great thing is that sometimes desensitizing the system to one or two predominant allergens (dust mites and ragweed, for example) will downregulate the whole system. Eosinophils will go down, circulating IgE antibodies will decrease, the whole system just calms and this can sometimes help with atopic skin reactions too.
(2) I suffer from brachioradial pruritis on my sun-exposed forearms and I know itching. That condition is actually from a nerve problem in the neck and so it doesn't have anything to do with the skin, but it is still an intense itch that is relieved temporarily and exacerbated long-term by scratching. The two things that worked for me to break the itch-scratch-itch cycle were capsaicin cream and, even more, ice pack application. YMMV, but if I can just stop scratching for a day, it gets so much better. But it's certainly much more difficult at night. Maybe take a dose of Benadryl for one night and get that first one under your belt and then when you're awake make a conscious effort to not scratch. Way harder than it sounds, I know.
Good luck! PM me if you have any questions and I can try to help!
posted by robstercraw at 11:04 AM on June 11, 2014 [1 favorite]
(1) Consider seeing an allergist instead of another dermatologist if you can afford it. Immunotherapy (allergy shots or drops under the tongue) can target specific allergens and desensitize you. And the great thing is that sometimes desensitizing the system to one or two predominant allergens (dust mites and ragweed, for example) will downregulate the whole system. Eosinophils will go down, circulating IgE antibodies will decrease, the whole system just calms and this can sometimes help with atopic skin reactions too.
(2) I suffer from brachioradial pruritis on my sun-exposed forearms and I know itching. That condition is actually from a nerve problem in the neck and so it doesn't have anything to do with the skin, but it is still an intense itch that is relieved temporarily and exacerbated long-term by scratching. The two things that worked for me to break the itch-scratch-itch cycle were capsaicin cream and, even more, ice pack application. YMMV, but if I can just stop scratching for a day, it gets so much better. But it's certainly much more difficult at night. Maybe take a dose of Benadryl for one night and get that first one under your belt and then when you're awake make a conscious effort to not scratch. Way harder than it sounds, I know.
Good luck! PM me if you have any questions and I can try to help!
posted by robstercraw at 11:04 AM on June 11, 2014 [1 favorite]
Sorry - I didn't read carefully enough and see that you've tried ice and Benadryl. Try the capsaicin (in a small amount first to make sure that it doesn't burn on any raw areas) and then disregard suggestion (2) above.
posted by robstercraw at 11:07 AM on June 11, 2014
posted by robstercraw at 11:07 AM on June 11, 2014
Have you tried a sleeping pills in the short term? The only way I could sleep through my last severe eczema flare was to get something prescribed. It knocked me out to the point where I stopped scratching in my sleep and actually got a decent sleep in the short term. YMMV etc.
In the longer term, I would highly suggest finding someone to give you a blood test for allergies. It exists, you may have to pay out of pocket but it's amazing. I went through years of eczema he'll with no obvious cause, and and my skin tweezers all negative for allergies. The blood test revealed I have a moderate allergy to wheat and eggs, haven't had a flare since I stopped eating both. If I do, it comes back. I'm on my phone but I'll see if I can dig up info on the test I had.
posted by snowysoul at 11:46 AM on June 11, 2014
In the longer term, I would highly suggest finding someone to give you a blood test for allergies. It exists, you may have to pay out of pocket but it's amazing. I went through years of eczema he'll with no obvious cause, and and my skin tweezers all negative for allergies. The blood test revealed I have a moderate allergy to wheat and eggs, haven't had a flare since I stopped eating both. If I do, it comes back. I'm on my phone but I'll see if I can dig up info on the test I had.
posted by snowysoul at 11:46 AM on June 11, 2014
What about having mittens made out of a very smooth and soft fabric that you cannot rub against your face at night? I'm thinking you could either buy silk glove liners or purchase a bit of silk and make very simple "bags" to attach to and put over existing gloves/mittens you wear at night.
posted by gumtree at 11:54 AM on June 11, 2014 [1 favorite]
posted by gumtree at 11:54 AM on June 11, 2014 [1 favorite]
Have you tried Aquaphor? Or alternatively how about Solarcaine, which contains aloe vera to moisturize your skin and lidocaine to numb your skin? Whatever you try, I would try it in a small area first to make sure it doesn't make things worse.
posted by Dansaman at 12:01 PM on June 11, 2014
posted by Dansaman at 12:01 PM on June 11, 2014
Best answer: I'm sorry you're dealing with this too.
One idea that might help gently restrict your arm movements so you can't scratch in your sleep: a fabric sleeve with a pad or flexible foam insert on the inside of your arm/elbow. Something like this, with a stiffer pad and turned to the other side. I rigged up something similar with a cotton sleeve and piece of flexible foam when I was suffering from ulnar nerve problems and needed a way to stop scrunching my arms up at night. You still have some movement, but it's harder for your hand to reach your face/neck.
posted by mefireader at 12:14 PM on June 11, 2014
One idea that might help gently restrict your arm movements so you can't scratch in your sleep: a fabric sleeve with a pad or flexible foam insert on the inside of your arm/elbow. Something like this, with a stiffer pad and turned to the other side. I rigged up something similar with a cotton sleeve and piece of flexible foam when I was suffering from ulnar nerve problems and needed a way to stop scrunching my arms up at night. You still have some movement, but it's harder for your hand to reach your face/neck.
posted by mefireader at 12:14 PM on June 11, 2014
Response by poster: Mefireader, that's a great point. I actually have an elbow wrap/immobilizer that I had to use when I was getting carpal and cubital tunnel symptoms, which would serve a similar purpose, I think- can't bend my elbow to scratch.
posted by rachaelfaith at 12:23 PM on June 11, 2014
posted by rachaelfaith at 12:23 PM on June 11, 2014
Bit late but: my daughter has had eczema all her life, she's now in a kind of maintenance period without flare-ups.
1/ Eczema sufferers may be allergic to lanolin, an ingredient in many moisturisers such as E45 cream (British dry-skin remedy). Check ingredients and eliminate lanolin.
2/ Food allergies are totally a thing with eczema. Milk and shellfish are very common triggers. I've never heard of spicy food exacerbating anybody's eczema, although it does cause your skin to flush and that might enhance the feelings of itchyness temporarily.
3/ Sea water helps. Swimming in the sea did our daughter a world of good.
4/ (Related) Urine is a folk remedy. I'm not recommending it tho! But I have seen someone wipe their toddler down with a wet nappy claiming it helped their skin.
5/ Stay away from scented chemicals on your skin and rinse your laundry thoroughly.
Steroids are great, but if you're using them already and this flare-up has occurred, obviously you need to look for a separate cause. Sounds like you're in a vicious circle and you need to find the one element that will let you break a link in the chain.
posted by glasseyes at 7:04 AM on June 14, 2014
1/ Eczema sufferers may be allergic to lanolin, an ingredient in many moisturisers such as E45 cream (British dry-skin remedy). Check ingredients and eliminate lanolin.
2/ Food allergies are totally a thing with eczema. Milk and shellfish are very common triggers. I've never heard of spicy food exacerbating anybody's eczema, although it does cause your skin to flush and that might enhance the feelings of itchyness temporarily.
3/ Sea water helps. Swimming in the sea did our daughter a world of good.
4/ (Related) Urine is a folk remedy. I'm not recommending it tho! But I have seen someone wipe their toddler down with a wet nappy claiming it helped their skin.
5/ Stay away from scented chemicals on your skin and rinse your laundry thoroughly.
Steroids are great, but if you're using them already and this flare-up has occurred, obviously you need to look for a separate cause. Sounds like you're in a vicious circle and you need to find the one element that will let you break a link in the chain.
posted by glasseyes at 7:04 AM on June 14, 2014
I have flare ups and am currently on allergy shots, hoping to get things under control. My doc prescribed Hydroxazine HCL (spelling?) which is an anti-anxiety med but also helps with itching and makes you sleepy. I'm to take a pill or 2 before bed if I'm flaring and may need help sleeping. It knocks me out lightly, and I wake up refreshed and having not scratched myself to death in the night. Might be worth asking about.
posted by buzzkillington at 11:13 PM on June 14, 2014
posted by buzzkillington at 11:13 PM on June 14, 2014
This thread is closed to new comments.
posted by Bentobox Humperdinck at 8:20 AM on June 11, 2014 [1 favorite]