alternative/holistic medicine, eczema, exercise and activity, flare-up, food and nutrition, my journey, NEA, pregnancy, relationships, skin biome, skin care, sugar, topical steroid withdrawal, topical steroids, topicals, women's health, wounds and infections

my deviation from the beaten path

gray pathway surrounded by green tress
Photo by Skitterphoto on Pexels.com

Today’s post is all about trying to convey what life with eczema is like for me. The first thing I need to stress is that my condition was not always this severe. I can remember a “before”, as my condition didn’t start affecting my skin globally until I was 21 or 22.

So how has eczema affected me?

  • insomnia – Some nights I was unable to sleep until 6am. More recently off and on I have difficulty sleeping from midnight to about 6am.
  • food paranoia – Given that I have legitimate food allergies to peanuts, pistachios and cashews, I know how to deal with food allergies that cause anaphylaxis. What I don’t know how to deal with is the thought that some common food might have developed into being the cause for the severity of my skin issues. Also sometimes I’ll eat something that is usually fine for consumption, and I’ll break out in hives in my mouth inexplicably and the next time I consume said food, it won’t happen.
  • many different diets – I have tried the gambit of elimination diets, auto-immune diets, vegetarianism, paleo diets, sugar-free diets, low-carb diets, detox diets, etc).
  • food-related social repercussion – You have no idea how frustrating it is to have people think I am “just being picky” when I am avoiding certain foods or diets. It’s usually when I’m avoiding gluten, dairy, or soy or other common American-diet staples. What I don’t understand is why people think I enjoy avoiding these foods… do they not know my undying love for pizza and ice cream?
  • intimacy issues – picture not being able to cuddle on the couch while watching a scary movie without covering myself in a blanket to make sure my skin doesn’t touch my husbands. Long drawn out hugs? Nope.
  • skin-to-skin with baby issues – I have adapted to the lifestyle of needing to put a barrier between me and my baby’s skin. When I feed her, I throw a cloth on or wear long sleeves before I put her head on my arms. When I have her in a carrier, I try to put a layer between her face and my chest, or else I know I’ll have to take her out earlier as my chest will start turning red, flushing, and itching.
  • exercise limitations – Up until my junior year of college I was doing many different sports and activities including soccer, track and field, long runs on my own, ultimate frisbee, generically running around like an idiot, etc. Post-eczema life, unless I can get a flare to calm down for months, cardio is a nightmare. Hell, at this point in time, just going for a long walk in the summer induces itching everywhere that takes at least 10 minutes in an air-conditioned building to relieve.
  • summer nightmare – See what I mentioned about walking above and now just add that to general life in the summer. I do well if I don’t move, and if I avoid direct sunlight. Though I also need sunlight for vitamin D (and in my previous life I loved the sun) so I’ll pop outside for a few minutes to bask in the sun’s warm embrace and then I’ll overheat and have to come inside. At least the itching only starts if I sweat.
  • pain (cracked skin) – During certain stages of a flare I dry out (especially at night or after washing my hands or other random times) and my skin will crack. The worst areas are my hands (which will fissure all over) and my ears, as well as sometimes under my eyes.
  • obsession – I spend so much time thinking about my skin and worrying over if I am doing something to make it worse, or not doing enough. It gets exhausting really.
  • career switching – I dropped out of my physical therapy doctorate program because I just couldn’t deal with my skin. I wasn’t sleeping, I was uncomfortable sitting (more on that in a bit), and I couldn’t stand being in an air-conditioned room (see below), or being touched or coming in contact with another’s skin, which made it incredibly difficult to practice the hands on aspects of PT. I am now still in a stage of making my own career, which while exciting, is stressful when I have to talk about it because it’s not a clear cut “oh, yeah, I do X” anymore.
  • fear of infections – As my skin barrier is compromised so often, the risk of infections, primarily Staph, is high. I spend a lot of time wondering if I am infected and worrying when I catch a cold or something that I have contracted Staph (again).
  • hand washing (pain/itching) – Imagine how many times you have to wash your hands or use hand sani when you are a PT student working in a clinic. Doing dishes is irritating enough. Sometimes even just taking a shower will irritate my skin.
  • cleaning frequency – Given that I shed skin faster than the average human, I spend a lot of time cleaning to try to not live in my own skin dust filth.
  • social situation aversion – When I am flaring, I have no desire to go out, not only because I worry about the stares I get for physical appearances, but also because it takes so much energy to deal with varying temperatures, varying foods, varying stressors, usually a lot of sitting, the inability to play/dance without itching, etc.
  • general discomfort (pain, itch, smell) – Eczema this severe is uncomfortable. The obvious is that it itches, and not like a “I have a random little itch” but more on the level of if a swam of mosquitoes bite you all over your body but instead of having angry welt-y bite marks externally, they are all inside your body and not visible to anyone. The pain comes from the cracking I mentioned above, as well as the pain of the self-inflicted wounds from scratching too hard. When I have a bad flare, I develop this scent that I call the burning rubber skin that I loathe.
  • depression and anxiety – It’s no surprise that aggressive and long lasting flares take an emotional toll. As I spend time in pain, itching, paranoid about foods I eat, avoiding people, and unable to exercise and play as I normally would, sometimes my moods take a nose dive.
  • money spent – From skin care lotions and moisturizers, general soaps, bath products (bleach, epsom salt, apple cider vinegar), natural house cleaning products, dry brushes, the rebounder, to the doctors’ visits, etc, this condition isn’t cheap.
  • doctor visits (dermatologists, endocrinologists, neurologists) – There is something very frustrating about seeing many doctors and still getting no relief. I have moved a few times in the last past 4 years and as a result have an even larger number of individual doctor visits under my belt. The general consensus? I am fine (as in no underlying crazy cause of my skin issues like cancer), but I have eczema. Oh and have I tried using steroids creams? -.-
  • hormone imbalances – Since I spent so much time inflamed, I usually have a highly elevated level of immune stuff, like my white blood cell count. When my skin first started going haywire, I also have high cortisol level, which made doctors think I had a hormonal imbalance and first order an MRI of my brain.
  • forever fielding questions – “Have you tried X??” “What’s wrong with your skin?” “Do you use lotion?”
  • excoriation disorder (dermatillomania) – Due to very often having flaky skin, I have developed a picking disorder where I spend inordinate amounts of time trying to remove dead skin from my body. It’s become partially therapeutic and partially me trying to exert control over my uncontrollable presentation.
  • scratching OCD – I scratch all the time. In my sleep, when I’m stressed, when I’m relaxing. I don’t even notice I’m doing it sometimes.
  • scarring – Go figure from all that scratching I’d have scars.
  • ring wearing/jewelry/piercings – I no longer wear my wedding band on my left hand because the ring finger on that side is usually swollen. I wear it on my right now. I also had to take out my belly button piercing, my nose piercing, and all ear piercings except tragus one because the skin started itching so badly around them all.
  • hot inflamed skin with cold chills/shivering – One of the worst stages of a flare is when my skin is constantly wet and weeping and heated, but I’m losing so much heat that I am internal freezing and will shiver uncontrollably.
  • winter is bad – It’s hard enough to regulate my body temperature without the weather outside being frigid.
  • sensitivity to pressure contact (sitting/laying down) – This made PT school very trying. Hell, going to a doctors office and laying on the table, or sitting on a chair for too long made my skin feel terrible and heat up and start itching. This is even through wearing long sleeves and pants.
  • nervousness = flares – Some nervousness is good for keeping our brains alert. Unfortunately, any little bit of social nervousness (like before a practical or talking to new people) would cause me to start to flare and itch.
  • wrinkly, swollen skin – Still not sure why this happens (maybe it’s a product of topical steroid withdrawal) but the skin around my joints especially, on the extensor side, starts to look like that of an elephant.
  • discoloration – From redness to drying out gray/white, I am a veritable human mood ring.

And since people love me and will forever want to help, here is a list of what I have already tried:

  • topical steroids (for a good 20 years as this was the main accepted solution to eczema for decades)
  • topical medicines that are not steroids (Elidel/protopic, etc)
  • oral steroids
  • lotions/moisturizers (cetaphil, cera ve, aquaphor, dove eczema line, exederm, burt’s bees, obscurely-named-other-ones, etc)
  • going moisturizer free (actually does help with the red/weeping stage)
  • ocean water
  • chlorinated pools
  • naturopathy
  • acupuncture (including herbs, cupping, and massage)
  • diet (gluten free, soy free, dairy free, vegetarian, sugar free)
  • phototherapy (clinically done in light boxes, and just being in the sun)
  • antihistamines
  • sleep aid pills
  • yoga, meditation, and deep breathing
  • coconut and sunflower oil
  • bleach, epsom, and apple cider vinegar baths
  • antibiotics
  • collagen powder (edible)
  • collagen cream
  • wound care
  • probiotics

Update: I have not tried any biologics because I have been pregnant and am now nursing.

Despite all the shit that comes with eczema, there have been some silver linings in my experience including:

  • Having to deal with eczema year round has made me live much more seasonally. In the warmer months I try to take advantage of being able to walk outside for hours and garden to get vitamin D and get exposed to bacteria in the soil (and as stress relievers). In the colder months I turn to herbal teas and nourishing soups, and bundle up well to go on walks to get fresh air. I pay a lot more attention to what can grow when, and try to eat accordingly (like lighter foods in the summertime).
  • Having dealt with the difficulties of eczema for so long, in juxtaposition pregnancy wasn’t half bad (though to be fair my belly was small and I didn’t have morning sickness… but discomfort with sleeping? Aversions to certain foods? Tired randomly? Feeling generally uncomfortable? Yep, I was used to that all already).
  • In effort to control my flares, I am constantly open to trying new things (though my wallet isn’t!).
  • When I first came up to visit Jake, before we were dating, we had an honest conversation about eczema and I told him how bad it gets for me, and he still wanted to be with me. To this day, I’ve never had insecurity about my skin around him.
  • I have learned to really appreciate the good days. As a result, I’m generally even happier of a person.
eczema, exercise and activity, my journey, topical steroid withdrawal

elephant skin

pexels-photo-148807.jpeg

My skin is going through what I believe to be another topical steroid withdrawal. My reasoning? I have excessive wrinkling on the extensor surfaces of my skin (I call this stage of skin my “elephant” phase, and I’m not alone; see the study here), and I was on a moderately potent steroid ointment for most of my body and a lower potent one for my face/crooks of elbows and knees when I found out I was pregnant. What finding out I was pregnant meant for my skin was that, because the more potent one was not necessarily safe for a growing baby, I was taken off of it earlier than planned and told to use just the lower potency one all over my body instead. Unfortunately my thicker skin areas were used to the higher one so the response was less than ideal and I ended up still flaring a lot as I did my low potency taper. I gradually phased out using the lower one despite some discomfort because having to use topical steroids over such a large surface area of skin does increase the risk of it being absorbed into the bloodstream, making it more likely to affect my baby.

So in a nutshell I had a fairly quick taper and now am cold turkey off all topical steroids again. The result has been interesting. This winter has dragged on which means I have been starved for vitamin D, more sluggish from being trapped indoors, and cold. Whenever I have a withdrawal, my skin is hotter to the touch because it is acting as an impaired barrier and letting my core temperature heat go. The result? I am a grouchy popsicle of a human.

Luckily, we have finally seen a break in the northeast chill, and I was able to enjoy the weekend basking in the sun and walking for miles. Hopefully getting outside and playing more will help me get my skin back to its old equilibrium before the baby comes.

Nighttime presents its own problems. Though I am less stressed about losing sleep nowadays (having a remote job helps), I do find that physically sleeping is still a trigger. The last few days I have had hives that appear on my back when I am in bed (but not in the same part of my back each day which would have made me think it was my sheets or  lotion). I also tend to get heat rash-like symptoms on whatever side of my body I am laying on, or even if I roll over to lay on my back for a bit. I haven’t figured out why that is, but it’s extremely irritating and usually affects my IT band area on my legs the most. And naturally since I am awake weird hours, I notice how my skin dries out as the night goes on (but I am usually too tired to actually get up and re-apply another coat of lotion/moisturizer).

My methods of combatting this withdrawal flare are the following:

  1. keeping calm. I have been extraordinarily unfazed by my skin this time round. I am not worried it will never heal, and I am not worried when I miss sleep (I just try to take more cat naps later on or go to bed the next day at crazily early times like 5pm).
  2. diluted bleach baths. I tend to take one many once every one or two weeks just to make sure I keep the potential infections at bay. I usually know when I have had bad scratching bouts or see signs of what I think may be early infections, and I decide when to do these baths by those feelings.
  3. sugar reduction. Yes, despite being a sugar-lover, I am trying to cut down on added sugars. I don’t even put sugar in my oatmeal anymore (instead I cut up a fresh green apple into it or add berries if I have them). I let myself have one treat on Saturday and Sunday, but I make it so I have to work for it (like walk 2 miles to get the treat, then walk back).
  4. finding a good product for the skin presentation. Lately I’m hooked on Exederm’s daily care moisturizer. It doesn’t stop me from still drying out and flaking but it also usually doesn’t burn or cause excessive itching (except sometimes at night, but my skin is an unpredictable animal at night).
  5. living the “motion is lotion” motto. I have been trying to increase my NEAT (non-exercise activity thermogenesis) meaning I have been trying to reduce the time I am a sedentary lump. The warming weather is helping (I will happily walk anywhere in my town even if it is a 1-3 mile walk one way), and I have been doing a 100 push-up challenge every night before bed (I do modified pushups as my belly has been getting bigger!). I also started incorporating more hip workouts and squats/lunges to keep my legs in shape as this baby grows. All in all, “I like to move it, move it”.
  6. showers first thing. When I get up from bed (which sometimes is a struggle in itself), I get into the shower to start my day. One, I find it therapeutic, the feeling of water. Two, it helps me soften the skin and wash off some of the dead skin so that the lotion/moisturizer can be better absorbed. Three, it bases me in a routine.

All in all I feel like I am handling this withdrawal much better than previous ones. My skin has more or less remained skin-colored this time (instead of reddening everywhere). I’ll give updates if it starts to subside or if it gets worse in time.

Oh and here is a photo of what I mean when I say I have elephant skin (this is my right knee):

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eczema, flare-up, NEA, topical steroid withdrawal, topical steroids, topicals

topicals: steroids, withdrawal, and more

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As the science of skin (dermatology) progressed, more information was understood about what this large organ is made of, how it works, and how to keep it healthy.

I won’t go into the skin anatomy today but one thing that was more or less universally accepted was: dry skin = bad skin. So in practice this meant that doctors prescribed patients to take baths and let our skin absorb lots of water and then get out, lightly pat dry, and apply the topical medication. An NEA webinar mentioned you need to get the topical medication on within 3 minutes of getting out of the water, which for a full grown adult with eczema over the entire body, proves to be a bit of a challenge.

So now let’s go more into the specifics about topical medications, let’s start with steroids. Topical steroids come in 7 classes: from Super Potent to Least Potent. A high potency topical steroid is one we’d put on our hands/feet/wrist/ankles or the areas that are more likely to have excessive thickening. A mid-strength topical steroid may be safer for the whole body but only for a 3–5 days for thin skin areas (around the eyes, mouth, genital areas). A low potency topical steroid includes the things you can get over the counter like hydrocortisone (1%).

A useful fact to keep in mind is you should know the name of the steroid you will/are using as well as the concentration (listed as a percentage). When in doubt, it doesn’t hurt to google up your specific steroid to see what strength it is if you are not sure, or ask your doctor.

Now for the more recent developments in the eczema world: the non-steroidal anti-inflammatory medications (like Protopic and Elidel). Both are types of topical calcineurin-inhibitors (TCIs), which is a big term that just means they block T cells and stop the too much cytosine (a protein that can cause redness, inflammation, and itching) from being released. TCIs are great because they help the skin without decreasing the amount of healthy cells, and without going as deeply into the skin layers (unlike topical steroids, which cause thinning of the skin if used for a long time).

Protopic is usually stronger than Elidel, but both are often seen as medications to be used after you’ve finished the course of a mid-strength topical steroid, the reason being is that the TCIs can be used for longer periods of time. They are said to be safe to use around those thin-skinned areas, but that they generally don’t work on lichenified (or thickened) skin.

An even newer development was Eucrisa. This is a non-steroidal topical ointment that works by blocking an enzyme called phosphodiesterase (which is increased in immune cells of people with eczema), which then also blocks out the production of excessive cytokines. More research is still to come, but Eucrisa seems to be another promising non-steroidal option.

Lastly, let’s talk about topical corticosteroid (TCS) withdrawal (also known as topical steroid withdrawal or TSW). The health community is still hotly torn on this issue. On the one hand, in 2015 it was stated that the TCS withdrawal is a potential adverse effect of prolonged use of topical steroids, though it was said to be a rare occurrence with not a lot of evidence backing it, and that it was probably caused by topical steroids being used incorrectly. To be honest though, it seems it would be difficult not to have misused topical steroids in the past as the research behind how much to use and how often has changed over the years.

On the other side, there are organizations like the International Topical Steroid Addiction Network (ITSAN) or individuals like Dr. Rapaport that argue that the Red Skin Syndrome (RSS) is directly because of the topical steroid use/overuse/abuse in societies.

An interesting blog post I came across talked about how much cortisol a healthy body can normally produce, and how the commonly prescribed topical corticosteroids measure up. His analysis was that the potency of prescription steroids are often so much higher than what our bodies could naturally produce, which might explain why it seems so much more common to hear about people’s skins getting addicted. He was testing out how using very low potencies and/or low doses to mirror how much cortisol our bodies could normally produce, and see if that helped him maintain his skin throughout the winter.

Also food for thought, we know that studies are incredibly expensive to fund, and so to get a lot of evidence backing up TCS withdrawal or RSS, there would need to be big companies supporting the research. However, if these studies could then have results that jeopardize major supporters (like a pharmaceutical company), it becomes less likely any such companies will want to fund said studies. I’d bet it will be a while before we get a lot of evidence around more specifics of TCS withdrawal/RSS.

eczema, flare-up, topical steroids

how to find dr. right (dermatology edition)

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As one of many people who sees a dermatologist for some kind of reoccurring eczema or atopic dermatitis (AD) and as someone who has cycled through the what feels like all options for treatment (often never finding that perfect product, the lifestyle management, or that patient-doctor connection), and as someone always searching to get to my dream skin, I am always hunting for ways to build a relationship with my future Dr. Right.

The most important part of having a good working relationship with your dermatologist is being able to speak your concerns. I have gotten to a point in my life where, when meeting a new dermatologist, I throw out my entire skin background in a verbal paragraph; the goal being to test the waters of this new budding relationship. Here are some examples below for personal context:

  • I have had topical steroid withdrawal (TSW) before because of my excessive use of steroidal topical ointments in my earlier years, and I am somewhat hesistant to use them now. I am also not entirely interested in oral steroids again, because of their shopping list of side effects. It is important to speak your fears of strong medications, so your derm knows what you need to discuss.
  • I have been using coconut oil on my skin and have had no problems with it except that it didn’t prevent a flare. This bit of information is shared because it’s true (and you never know when new research will come out saying that coconut oil is not as good as we thought it was… e.g. what happened with olive oil) but it also can be used to get the derm’s opinion on natural products/non-dermatologically created alternatives.
  • I have been avoiding gluten and soy (because they are common allergens and because I have other legume allergies) for a while and worry that me starting to eat them again this summer may be part of the reason for my flare. This is brought up to bridge into the field of nutrition to figure out my new derm’s opinions on diet in regards to its effect on eczema and management.
  • I know about the current new drugs on the market (Dupixent) and wonder about its effect on pre/peri/post natal women. It’s crucial to remember to bring up reproduction-related information if you are going to start a drug that hasn’t been tested on men or women for reproductive side effects, if you are interested in having children one day.
  • What is the plan for me and what will my management entail going forward? After all, I want to know she isn’t just going to prescribe me a crap ton of drugs and wish me the best with my life… continuity of care is extremely important for preventative care and management.

In the case with AD, I was hesitant about both topical and oral steroids as the major component of my management, and my derm was receptive to my initial hesitation. However, she also argued with the need for inflammation management, because in an untreated state, chronic inflammation will damage other organs and systems in time. So she walked me through the details about what she was thinking for both types of steroids- the dosages planned and how long she planned to keep me on them. If you are confused about what the drugs do or their safety, it doesn’t hurt to inquire more (for example 60mg of prednisone is on the high end of how much doctors will prescribe).

My derm told me of her roadmap for my management (an important thing you want your dermatologist to bring up!)- how long she’d want me on the oral steroids, which topical steroid was for my face versus which for the rest of my body, how we’d cycle through a 2-week steroidal/1-week non-steroidal topical cycle, and the need for more frequent bleach baths to prevent staph infections from other healthy-skinned people (because everyone carries some level of staph on their skin).

When I asked her my big question — what can I do to prevent these flares from coming back aggressively again, she also brought up diet changes, as well planning future appointments to monitor how the preventative measurements were going. All in all I left with a sense of her being committed to making sure things worked, not just prescribing me all the meds I could carry and hoping I didn’t ever need to come back.

The big takeaway from being a frequent flyer of the dermatology world is that it is okay to need to find a dermatologist who fits with you. You want someone you feel comfortable with, who you can talk to openly and feel like they both have the time to listen and are receptive to your ideas and where you are in your health literacy (i.e. do you like written or oral directions, how familiar are you with the drugs/treatments/interventions, how much you feel you understand or care to understand about the condition as a whole, how it works genetically, immunologically, neurologically, etc).

You should feel like you are leaving with enough information to get you by AND also with your questions answered, but also that you know what to expect and when to reconnect with the derm in the event that something isn’t working just right. You don’t want to feel like you’ve heard it all before, or that there is something the derm just isn’t getting about you. The relationship needs to be out on the table and the communication level high. If you have persistent remaining questions- ask them! If you are frustrated by something, voice it!

With any chronic disease, management relies on the ability to be able to communicate your feelings and symptoms, and on the ability of the provider to be able to give you the support and care contingency to make sure that you don’t falls through the cracks in the system. So when working to develop a fruitful and useful relationship with your dermatologist, don’t be afraid to be a bit selective and work through difficult questions to see if you have found your Dr. Right.

 

Here’s a photo of my own hands October 2016 (left) and March 2017 (right):

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