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

how my skin made me take the road less traveled

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

my addicted (skin) life

pexels-photo-286951.jpeg

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.

 

REFERENCES

Carr WW. Topical Calcineurin Inhibitors for Atopic Dermatitis: Review and Treatment Recommendations. Pediatr Drugs. 2013 Aug;15(4):303-310.

Hajar T, Leshem YA, Hanifin JM, Nedorost ST, Lio PA, Paller AS, Block J, Simpson EL. A systematic review of topical corticosteroid withdrawal (“steroid addiction”) in patients with atopic dermatitis and other dermatoses. JAAD. 2015 Mar;72(3):543-549.e2.

Paller AS, Tom WL, Lebwohl MG, Blumenthal RL, Boguniewicz M, Call RS, Eichenfield LF, Forsha DW, Rees WC, Simpson EL, Spellman MC, Stein Gold LF, Zaenglein AL, Hughes MH, Zane LT, Hebert AA. Efficacy and safety of crisaborole ointment, a novel, nonsteroidal phosphodiesterase 4 (PDE4) inhibitor for the topical treatment of atopic dermatitis (AD) in children and adults. J Am Acad Dermatol. 2016 Sep;75(3):494-503.e6.