Thread by @lullielucille

Brief summation of my long #RealPainStory - I was born with Ehlers-Danlos Syndrome. Significant motor control issues were evident from the get go, and I’ve been in physical therapy pretty much constantly since I was two months old. Some of my earliest memories revolve around 1/13

the significant musculoskeletal pain that comes hand in hand with the disorder. Although I was always unable to be in sports or play around physically with other kids, I functioned well enough academically until about age 12. Then everything changed. I started experiencing 2/13

severe episodes of pain around my lower abdomen and down into my groin. On the level of the skin, it felt like someone had lit a chemical fire. On the level of the muscle, it felt like I was being stabbed. I had no idea what was going on, nor did others. Within a few months 3/13

the pain started occurring 24/7. I couldn’t sleep, couldn’t function academically or socially. I was referred to a local neurologist who, concerned about some co-occurring autonomic signs, had me undergo a thermoregulatory sweat test. The results, as she put it, were highly 4/13

unusual. I have a totally idiopathic non-length dependent polyneuropathy beginning at my naval and extending about halfway down both of my thighs. To put this in perspective, almost all cases of polyneuropathy are length-dependent (beginning in feet, disease can advance to 5/13

arms & legs.) The cases that are non-length dependent are almost always full-body & associated with a set of symptoms similar to fibromyalgia. I got written up in a case report with a few other kids, offered gabapentin, which I couldn’t tolerate, and left to fend for myself. 6/13

This was the summer of 2014. I was a rising 7th grader. By the time October came around, I was too ill to attend school. Not sleeping at all, having trouble speaking in full sentences because of pain severity, etc. I just totally broke down. Left my little private college 7/13

prep school’s brick and mortar school building and never returned to a brick and mortar school building again. I’m nineteen and have only completed a few semesters of school since, and with a lot of accommodation. I’ll likely be the first in my family not to graduate 8/13

high school. Physicians? Nurse practitioners? All they offered for the first six years were gabapentin and amitriptyline, neither of which provided me any relief and had significant side effect profiles. Most nights I hardly sleep, I often sleep during the waking hours 9/13

because neuropathic pain is typically worse at night. My cognitive function is way, way down from where it should be, because my experience of the world is dominated by feeling like someone has just thrown a caustic chemical on my midriff & allowed it to drip down my legs. 10/13

Try functioning with that sensation. Try ignoring it, focus on other things instead. Me? I tried. I was offered CBT in order to learn to ignore my pain. I have found that no matter how hard I try I simply cannot, it simply demands too much attention. 11/13

Recently, now that I’m an adult, I’ve been able to access ketamine, which helps some, but it’s extremely cost prohibitive so I’m only able to get a few infusions a year. I just feel lucky that I was able to get into insurance-covered pain management at all. I know this 12/13

thread is long, but I think it’s important to let it be known that THIS is what high-impact chronic pain is. Not an inconvenience, not a non-preferential state, but a life-dominating misery that cannot be ignored. Thank you. 13/13 #RealPainStories @national_pain @speakingabtpain