eczema, exercise and activity, flare-up, food and nutrition, my journey

why eczema is so hard to solve

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Photo by Pixabay on Pexels.com

Over the years I have gotten so much advice from well wishers about how to cure my eczema. While some of the suggestions may be useful, more often than not they aren’t, and it may not be because the advice is something I’ve already tried or something outlandish. It may be more so because advice about a single aspect in my life to change doesn’t do anything impactful, because eczema’s root cause can be anything but singular. I know some people are lucky: they remove the allergen (mold, gluten, soy, eggs, nightshades, dairy, dust), they decrease their stress, they exercise more, they find a supplement that really works, and bam, no more eczema.

Unfortunately, I am not one of those people. My root cause seems to be tied to many different aspects, from overuse of topical steroids, to unresolved emotional issues after familial deaths, to increasing sensitivity to foods (on top of food allergies I was born with), to increasing discomfort with specific exercises and a sensitivity to heat and sweating, etc. So being given a new product to try doesn’t really solve the other issues preventing me from quickly recovering from each flare.

What I do find interesting, is people that have learned to live with eczema (and/or topical steroid withdrawal) and the various lifestyle changes they have done to help keep their flares under control. I came across a post a while back called The Metaphysical Meaning of Eczema – Do People Get Under Your Skin, which I thought would just be talking about how my emotions cause my eczema, but I was pleasantly surprised to read the author’s inclusion of a whole host of other things she does in her life to help. Because yes, I am sensitive, both skin-wise and emotion-wise (I can now flare-up from heightened nervousness from public speaking, or due to misunderstanding over trivialities at the store) but, and I am indignant about this, my sensitivity didn’t cause my eczema, and it definitely didn’t cause my topical steroid withdrawal. It probably is the reason it takes me so long to heal (on top of the constant flow of changes in my life… e.g. getting married, moving 4 times, leaving my graduate program, buying a house, having a baby- all within the last 3 years). I have learned to be zen about skin-related sleep deprivation, about hives from foods I normally can consume, over having to adjust all forms of activity I enjoy, over forgiving myself for making “mistakes” that then provoked a flare, etc. I know I still have a ways to go to consistently help my emotions flow naturally and not build up stress, but I have made immense progress and my skin doesn’t always reflect that. Hence why I get up in arms when people try to reduce my condition down to me “just not doing x”.

Woof, okay so now that I’m done that rant, back to my initial idea around today’s topic. The point is, eczema can be a multifaceted b*tch of a condition, with varying twists and turns that dictate how it goes for different people. If you don’t believe me, try reading the experience of Daniel Boey in his book Behind Every Itch is a Back Story: The Struggles of Growing Up with Rash, or peruse any number of personal blogs out there these days about someone going through TSW.

My point is that while I am happy for people who find ways to rid themselves of eczema flares through a singular method, I find it frustrating when we see the gimmicks of “anyone can cure their eczema if they just do x!” and find it somewhat damaging to reduce all people with eczema into the same world because said singular solutions don’t work for everyone. I appreciate people that talk about the myriad of changes they have had to do, because it shows that the cause of eczema, as it is still unknown for the most part, requires different management for different people, hence why it is so hard to “solve”.

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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

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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.
alternative/holistic medicine, eczema, food and nutrition, my journey, sugar, women's health

on medicinal ideologies

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Something that has always fascinated me has been the underlying ideologies behind medicine of different regions/cultures, be it modern western science, naturopathic medicine (which can blend a lot of the holistic and western medicine practices), traditional Chinese medicine, Ayurveda, or yoga.

As western medicine is the most familiar, I will talk about that briefly at the end.

The other day I went to a Qi Gong and Tai Chi school where I talked with one of the instructors about the concepts behind medical Qi Gong. We talked a little bit about my skin and the instructor mentioned how the skin and the liver are connected in the Chinese ideology and so if the skin is showing lots of signs of disease, there may be an issue with the liver’s digestion. She also mentioned that I would be a person expected to have an imbalance of yang over yin. Yin and yang are seen as complimentary energies that keep the body in balance, with yin being the cooler, more feminine energy, and yang being a hotter, more masculine one.

In regards to nutrition, when I was seeing an acupuncturist a few years ago, she also talked about the dietary components that might be causing my skin issues. She also believed that I had an imbalance of yin and yang, (in that again I had more yang), hence the inflammation. Her advice to me was to eat less spicy food, avoid sugars, and have more bitter herbs in my diet, as well as continuing the treatments I was getting from her in acupuncture, cupping, and massage.

The National Eczema Associate interviewed Dr. Xiu-Min Li (a Professor of Pediatrics in the Division of Pediatric Allergy and Immunology at the Icahn School of Medicine at Mount Sinai) who studies asthma and allergies (including AD) and went on to explain about traditional Chinese medicine and how it fits into the treatment of eczema. The article provides more insight into how TCM is starting to be incorporating into mainstream western medicine, with the goal of having an alternative to use before topical steroids. It would seem that many people currently turn to try traditional Chinese medicine when standard western medicine practices of topical/oral steroids and other topical medications don’t do the trick.

When I was doing my yoga teacher training a while back they talked about chakras. Chakras are energetic points of the subtle body and there are 7 of them that line the spinal column, and they each are meant to represent a basic level of human consciousness. According to what I learned during the training, when the third chakra (Manipura) is unbalanced, one can expect to see eczema and other stress-related skin conditions. This may be because the third chakra is connected to the detox related organs (like the liver) as well as the abdominals, obliques, etc.

Nutrition based in the Ayurvedic ideology talks about balancing the Pitta dosa (doshas are energies that control how we act, think, move, etc), and to do that they advise avoiding eggs, wheat, milk, nightshades, spicy foods, corn, shellfish, and overly sugary foods. Eczema is seen to be more of an excess of Pitta dosha, or more fire, hence trying to eliminate inflammatory foods.

[Here’s an anecdotal story published by the National Eczema Association a while back about a family that turned to Ayurveda when the western medicine wasn’t helping their daughter’s eczema].

In regards to modern western medicine practices, a few comparison points are developing that reflect the more holistic ideals in the ideologies mentioned above. For example, added sugar is more or less nationally seen as being inflammatory, and many doctors will caution against having a diet that includes too much of it. There are also more practices such as taking bleach baths to help reduce infection risk and other treatments that can be done at home without a prescription that a western doctor will recommend now. And the recommendations around lotions and moisturizers (over the counter) are more prevalent, though the brands which are suggested still vary. Light therapy/phototherapy is also recommended to help increase vitamin D exposure, and more and more doctors are also advising getting moving more to help with healing, as well as different solutions to try at night to help with sleep- from stress relieving techniques like meditation or taking a bath at night, to antihistamines.

I personally however, have not yet had a doctor who engaged me in a conversation that got more specifically into nutrition (minus not eating a lot of sugar or junk food). I am not sure if it is out of their scope of practice, but it has not come up in 26 years of seeing doctors, which surprises me. Many doctors, as far as I can tell, still think eczema is not really related to food, but as I do have food allergies I was born with, I would probably be a prime candidate to test for new allergies. The rub there is that generally doctors will prescribe getting a patch test done- but you have to have cleared up skin for the test results to be more or less accurate, and you can’t be on steroids at the time (and I haven’t had clear enough skin in about 3 years).

There is also the holistic medicine movement we see that is not specifically tied to any of the above ideologies. It includes more of western herbalism, often crossed with different nutrition changes and protocols, like the autoimmune protocol, or the elimination diet, or other variations to help with what is called the “leaky gut” syndrome. There are tons of resources from bloggers, nutritionists, doctors, etc about how to go about a nutritional change to heal whatever ailments you are undergoing with food, and I’ve also noticed a lot of sufferers of eczema have gone into nutrition after having success controlling their conditions with their dietary changes (one example being Prime Physique Nutrition). There are also movements to changing the whole lifestyle to be more holistic (like making your own cleaning products as well as skin creams, moisturizers, body wash products. A lot of this new movement is grounded in taking control of your health, often after having tried working with doctors in modern western practices for long periods of time unsuccessfully.

A health resurgence in America has been in herbalism. Some famous members of the community include Rosemary Gladstar (author of Herbal Healing for Women), Susan Weed (author of Wise Woman Herbal for the Childbearing Year), Aviva Romm, Mark Blumenthal (founder of the American Botanical Council), Christopher Hobbs, and many, many others. [Of note, I am usually deep into researching about women’s health, hence the references above. Gladstar does have a book on men’s health called Herbal Healing for Men].

From Gladstar’s book Herbal Recipes for Vibrant Health (which I own) she briefly talks about her general advice as an herbalist for how women can keep balance in the bodies by doing “good living practices”, which she notes as having proper nutrition, ample enough rest, joyful exercise, self connection, and tonic herbs. Delving deeper into nutrition she says to eat foods close to their natural states (which also means eat what grows seasonally), pay attention to how you feel while eating and afterwards, eat organic when you can, and eat  alkalizing foods. She notes about the latter that a lot of the disorders women have thrive in acidic conditions (aka when we eat too many sweets and carbs).

Personally, I have found relief from the most extreme symptoms by modifying my diet (I usually avoid eating wheat products and sugar because I tend to over consume foods containing them), and by using products approved by the NEA that avoid parabens, alcohol, and other chemicals that can be irritants for people with eczema. Acupuncture did seem to help- though I can’t say it was in isolation, since I did get massaged each time (which is also known for helping eczema). I tend to only bathe in a diluted bleach bath when I feel like my skin is getting close to infection (not sure how to explain how I know when that point is), otherwise this winter I did take a lot of baths with either apple cider vinegar (works similarly to bleach) or epsom salt (tends to calm me down and works well for helping me get through the dry out phase of TSW faster). I generally avoid using topical steroids when I can because I have gone through withdrawals before, and because I don’t like the reliance on something that doesn’t fix my issue (usually starting on steroids means I have to stay on them because I flare back up as soon as I start a taper).

All in all it does feel like there are more overlaps occurring over time in these differing ideologies, and we are seeing them sort of blend together in effort to figure out how to deal with chronic non-fatal diseases such as eczema. Whether or not they work still mostly seems to comes down to a person-by-person basis.

 

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