One of the many, many, many things they don’t tell you about having “rare” chronic diseases is that the seemingly odd symptom can turn into an entire lifetime issue. Ehlers Danlos Syndrome (EDS) and 1Autonomic Small Fiber Neuropathy (ASFN) are both extremely understudied. We, the sufferers, have to spend time scouring the internet and medical journals for tiny morsels of information which may align with our experiences and, in turn, bring some peace of mind to much of the uncertainty around our symptoms.
EDS seems to be much more common than ASFN. There are even social media influencers who share their EDS issues. I’ve written about how I believe EDS is directly associated with gastroparesis, POTS, and migraines. Though that isn’t accept as fact amongst doctors, it is rare to find one of those conditions effecting someone without the others attached. On the other hand, ASFN isn’t a disorder that I see popping up much online. Being extraordinarily difficult to diagnose, I can’t help wonder how many people are suffering symptoms which fall into the misc. category, but they would actually be explained with this comorbidity or possibly even an umbrella diagnosis of ASFN.
One of the issues which falls under both EDS and ASFN symptomology is skin issues. Connective tissue and nerves are both main components of our skin. I have the easy scarring, stretchiness, and bruising… supposedly all EDS symptoms. I also have the numbness, burning, stabbing, temperature issues, and generalized pain… supposedly all ASFN problems. What I haven’t found in the medical journals or online writings are the skin issues around allergic reactions, discoloration, tearing, and general injuries with either EDS or ASFN.
Recently, *gnarly stuff ahead warning* I have started experiencing my skin separating from my nails when there is pressure. An example would be putting something such as crampons on my shoes. You have to pull and fidget with force to put these on. That force of pressure against my fingers whilst pulling, tears the skin away from the sides of my nail-beds. When this first happened, I thought back to experiences in my past that I had always just shrugged off as personal oddities. Eggshells frequently cut me. Getting my cuticles cut would always result in bleeding and tearing no matter the technician. Opening difficult bottle caps would rip my hands up. I scar from bug bites that aren’t scratched.
These issues weren’t originally age related. I remember theses things happening in my late teens and early twenties. Things just healed faster and the scars were fainter back then. Unfortunately, unlike muscles, skin isn’t something that can be strengthened. I can use all the creams, ointments, oils, lasers, etc. Nothing will add a notable amount of collagen and robustness. Instead, I practice awareness. If something is difficult to open, I will ask someone or use a tool. Gloves are practical and stylish (though they can be painful if too tight). Keep nails healthy and manicured. Use lotions, soaps, and oils that help maintain moisture and can possibly have an aesthetic benefit. Dry brush before showers. Avoid wearing shoes for long periods of time whenever you can. Enjoy the practice of sitting shoes verses functional shoes. Wear sunscreen and bug spray with low irritant ingredients. Try to find bandaids, plasters, and other skin cut protectors which use sensitive skin adhesive or wrap on themselves to stay in place.
Generally, treating your skin as though you are a very fancy wealthy individual will set you up for the least amount of pain and damage. You don’t have to be rich to take care of yourself. Your body is already bent and often completely broken. Put this stupid meat sack at the top of your pamper list whenever you have the capacity and capability. Sometimes we have days where we have to convince ourselves to last a little longer on this planet. A cheap face mask, warm shower, freshly brushed teeth, and some lotion you love makes for a great pause of those dooming feelings. Concentrate on the top layer being calmed and, just maybe, the rest will follow for awhile.
Flayed man with left hand on hip Giulio Bonasone ca. 1531–76