I’m combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂
I’ve been reflecting on the various triggers to my eczema during this neverending but constantly changing topical steroid withdrawal and at 2am this morning I came to a realization. My skin tends to itch like crazy when I’m exposed to something wet in short bursts. This includes actions like washing my hands, dipping my feet in a tub to test the temperature, applying lotions to dry skin, etc.
This realization made me backtrack and first want to know what is the stimuli the body responds to when it’s wetted. We have receptors for temperature (thermoreceptors) and chemicals (chemoreceptors), and even some for painful exposure broadly (nociceptors). We also have cutaneous receptors that can detect pressure, touch, stretch, and vibrations, but still none of those seemed intuitive for how wetness would be recognized. Obviously it’s got a temperature component but that wouldn’t work alone. I did a quick google search and came across this article, which explained that wetness is registered a mix of cold temperature, pressure, and texture reception in tandem with learned experiences to create what was called “perceptual illusion”. Note, I have cited a secondary source above, not the primary study. The study itself I couldn’t access fully, but it is here.
I thought about the information I read and concluded that it didn’t help to explain why my eczema-afflicted skin reacts so aggressively to short duration bursts of wetness. Perhaps it has something to do with the over-sensitization nature of eczema. Maybe if the A-nerve afferents are just more reactive in general, inconsistent exposure (like multiple drops of water hitting my skin) would cause the A-nerve afferents to send tactile/temperature information repeatedly. Then as the over-sensitization makes me register many sensations as an itch, it would just create more itching. Maybe?
I’m combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂 This entry was written in April 2019.
It has been 6 years (more or less) that I have been dealing with what seems like severe skin issues. When this all started in 2013, no one knew what was happening to me, and various assumptions were made. My mom strongly believed the cause to be that the off-campus housing I was living in was too dirty. My dermatologists thought it was from improper skin care. My doctor thought it was from a staph infection. My specialist thought my symptoms had a hormonal component and the likely cause was my birth control pills or the pituitary adenoma they found on an MRI of my brain. I thought it was from topical steroid usage.
But whatever the cause, the medical treatment has been about the same no matter who I saw (and see). I’m advised to moisturize more with different moisturizers and then prescribed rounds of antibiotics and prescription on prescription of topical steroids (and often oral steroids too if I’m looking particularly bad). The result has also been the same- some clearing up of the skin, followed by a precipitous dive into new flares as I taper off the steroids. It’s almost like my skin is addicted to steroids. What I mean by that is that because I have been applying exogenous (not made from my body) steroids for so long, my skin has adapted. So when I stop using the steroids (or at this point, when I start decreasing the amount as recommended) my skin, having slowed its natural cortisol production in response, suddenly can’t remember how to make enough cortisol. As the blood all rushes back to the skin, with it comes all the inflammation that the topical steroids had kept at bay. (Oh and as an aside, the reason people can’t stay on topical steroids forever is because it thins out your skin over time and can also make you very sensitive to sunlight).
With addictions generally, I’ve heard you can take one of two approaches: drop it cold turkey or reduce it measurably over time. Both types of approaches have been attempted with my skin. The research behind tapering when your skin is already addicted has been changing a lot and so every doctor has a slightly different plan about how to do it. Unfortunately, every plan results with me having worser flares from the moment I start the taper. It is for that reason that I usually opt for the cold turkey approach.
The problem with cold turkey is that I haven’t lasted more than 2 years. At some point I’ll eventually give in and go to a new dermatologist and they will scare me into using steroids and antibiotics again. One told me my organs were also inflamed because my skin was (this was said off-handedly when I mentioned my fear of topical steroid withdrawal. No tests were done to confirm such a statement). Another said my choices were steroids or cyclosporine (an immune-suppressant given to patients getting organ transplants so their bodies don’t reject the new organ. To be on them requires kidney function monitoring, and your ability to fight off things like the common cold is reduced). Another said that skin regenerates by every 3 weeks so there was no way my skin would still have issues with tapering off. And yet another said I should just use topical steroids as needed just on my rougher spots, but then gave no general instructions about how long “as needed” is, if the skin keeps flaring.
This isn’t a blame game towards dermatology (anymore: that was an older stage of grieving). At this point I am more interested in the cultural acceptance for myself and by others of this state of being chronically ill. I’ll be honest, it’s incredibly difficult to do for myself. I constantly think about how life will be if and when I heal, what things I’ll be able to pick back up, what things I’ll be able to try. But deep down I have to accept I might not heal. Lately, I’ve been banking on biologics (Dupixent) to save the day and I just keep being like “okay I’m breastfeeding now but once we’re done, so long as I dont plan to have another child, I can go on these groundbreaking but experimental drugs.” I have to think about life decisions in that way because no one knows the effects of these medications on fertility or pregnancy, and if I use them I am not willing to take the risk. Harder still is that their efficacy isn’t even guaranteed!
As a result, I’m always forced to think ahead. So much of my experience as a first time mother has already been influenced by my condition. It’s not just dry skin. My body reacts like it’s allergic to everything, even to holding my baby’s head on my bare arms when breastfeeding. I always wear loose flannel over myself to not have that skin contact. I can’t give my baby baths as easily because my hands freak out from that kind of water exposure (washing my hands in general makes my hands itch like crazy and sometimes break into hives). I can’t do crazy sweat-inducing heat-generating workouts as easily without needing breaks to let my skin cool and dry off so I don’t scratch myself to death. This also means carrying my baby strapped to my body on a warm day eventually makes my stomach flare up. I am becoming increasing sensitive to new allergens, like developing allergies even to my childhood dog and a lot of my friends’ houses.
This condition also impacts my ability to sleep. Sometimes I’m kept up at night by my baby, but often times it’s my condition that does it; my skin going through thermoregulating issues or being triggered by friction, sweat, air temperature deviance, my husband’s body heat, stress, etc all irritating my body so I am either scratching or my skin is heating up and weeping, or cracking as it dries out. It’s a neverending battle to not fear going to bed though I know I need the sleep, because I get so nervous about how uncomfortable the night will be.
And then all the while that I’m slowly learning to accept my own condition as a state of being, I have to figure out how to validate myself to the world. The most common attitude I receive from others is that I am just negligent in using moisturizers, which results in a lot of product recommendations from coconut oil to castor oil, Eucerin to Aquaphor. The challenge is getting people to realize that it’s not just a dry skin issue. I often have sporadic allergic reactions to products (no matter how natural) because it’s an autoimmune issue. Over the past few months I have reacted to coconut oil, and then vaseline, and then vitamin E oil. Now all three are fine to use.
This condition also impacts what I can eat. I once had a date (the fruit), and immediately broke out hives all over my lips. This happens with foods I previously could and will again be able to eat. The reason is because my issue is internal. The skin is just an unfortunate symptom. And yes sure, if I can consistently figure out how to keep my skin closed (no weeping or open wounds) maybe my other symptoms will slow, but my skin didn’t flare up one day in 2013 in a vacuum; something else triggered it.
The next challenge I face is convincing people that this is more than skin deep. I have had people tell me that eczema (the blanket term for having rashes like mine anywhere on your body) is not an autoimmune disorder. One, it definitely is, and two, when you get to my severity level (aka chronic and where the whole body is affected) you have to recognize something else is at play. My eosinophil levels (a type of white blood cell) are often off the charts. I’m talking 6000 units when normal is 60. And again my inner mouth and throat aren’t affected by eczema yet they break out in hives fairly randomly. My digestion also can get messed up at a drop of a hat and I often know I’m in a healing phase when I have bowel movements again. Not to mention joint swelling and swollen lymph nodes even in regions of my body where the skin is intact. My body’s immune system is definitely overactive.
The next issue comes from dermatologists. I honestly don’t know why I keep expecting a different plan of care, as their profession literally meaning the study of skin, but I’m always bummed when they come at me from the approach of only how to fix my skin. Like I said, the problem is my skin isn’t the cause. So if they just give me meds for my skin, I finish the medications and the symptoms return because the cause hasn’t been found and treated.
All this is to say that finding a way to accept my life as it has become, and getting others to realize what it’s like has been difficult. I’m naturally a very anxious person, and the rapid onset of this condition followed by years of being a “medical mystery” and now basically a non-compliant patient (at least towards any derm that recommends steroids yet again without having new scientific evidence proving efficacy in case studies similar to mine) have made me quite wary. I don’t have good faith that people will understand what it’s like or why I am constantly reinventing my future. Why I constantly change my diet. Why I adopt these “hippie” approaches to skin care like refusing topical steroids or going moisturizer-free during wet flares. I’m not trying to be difficult or ignore medical advice. I’m working to figure out this body I’m in as it is, and treating it gently as I re-meet it and get to know it, accepting that yes, I may now always be chronically ill even though I still remember a time when that wasn’t the case. And yeah maybe there will be a cure and/or I will heal one day, but until that time I have to meet myself where I’m at now.
One of the most frustrating aspects of having chronic atopic dermatitis is that many of the symptoms overlap with Hodgkin’s lymphoma, but since the latter is rare, it is seemingly unlikely that a person will have it while also being difficult to have enough concrete signs and symptoms that a doctor will feel it warrants further investigation.
For example, the primary symptoms of Hodgkin’s described by the cancer organization are enlarged lymph nodes (especially in the neck, armpit, or groin), intermittent or constant fever, night sweats, weight loss, itchy skin, loss of appetite, and tiredness. Chronic eczema for me has hit virtually all of those but a fever (and I never have fevers even when I am sick… in fact I didn’t even have a fever when I had a staph infection in my lymph nodes some years back!).
The other rub (possibly because of the overlap of symptoms with eczema) is that Hodgkin’s is generally not detected early on, and so unless symptoms changed drastically over a short duration (which I’m not sure this type of cancer does), it would be hard to know if what I had was Hodgkin’s or just another day of swollen lymph nodes, without getting a biopsy of said lymph nodes to confirm. Even then, apparently it can be necessary to need multiple samples to track what’s happening with the lymph node over time.
This is why I believe it is crucial to one, keep track of your own symptoms and body and immediately go in to see someone when something feels off. You are the only person that lives in your body and so it is important for you to be able to track what is going on because no one else will have the lifetime of records that you do. Two, it is so important to find a PCP/provide who you trust and feel able to develop a working relationship with as time goes on. It is necessary to build this relationship over time and feel confident that you are being heard, and always ask questions when you don’t understand or aren’t sure what will happen next. A lot of the preventative care comes from making sure you are ready and informed about what is going on with your body.
I’m currently on that second stage- working towards getting a new PCP (as I recently moved into a new town), in order to establish some kind of plan to understand when my symptoms are just eczema, and when they could be indicative of something more.
Today, I had a check up at my OB/GYN office where they gave me the glucose test (you drink a really sugary drink and they draw your blood an hour later to see if you produce enough insulin to handle the drink). Along with the blood draw testing my insulin levels, I got back data on my WBC, RBC, and the breakdowns. Apparently I have higher than average WBC, and a variation of out-of-range monophil, lymphocyte, esophil, and neutrophil levels that basically make it seem like I am fighting a bacterial/fungal infection or something of the sort, but also still could fall into the realm of someone with lymphoma. So in a nutshell I am still destined to schedule a PCP to try and make sense of all this data and see if there is a cluster of data points that would help more or less clear up the sensitivity or specificity of whether or not I need to get checked for lymphoma.