CN: chronic pain, detailed descriptions of health issues and treatments, emetophobia, mental illness, food and eating issues.
A day living with Ehlers-Danlos Syndrome starts with how I slept the night before. Usually, I’m lucky enough to have pain in places that don’t interfere much with my sleep but recently my 5-year old shoulder injury has been bothering me at night. Sleeping on the injured shoulder hurts. If I sleep on the opposite shoulder, I can feel my ribs and shoulder joints creaking and clicking as I breathe in and out. There’s a pulling sensation between my shoulder blades and in my neck. I twist my torso, my arm, and my shoulder, I rub my neck and shoulder muscles, I push the sides of my ribs in and up, all in an attempt to realign whatever it is that’s out, waiting for that click that is followed by a wave of relief. I don’t find it and I lie awake in bed for a long time.
During the day I need to use the bathroom about once an hour, so even though I peed right before going to bed, I’ve been awake long enough that I have to get up to go again. I’ll likely wake up in the middle of the night to use the bathroom a second time and then again when I get up in the morning. Eventually, I manage to fall asleep.
Before going to bed, I turned off my alarm so that I could have the option of sleeping in on Saturday morning but my body has other plans for me. I’ve slept fitfully, clinging to unconsciousness to escape some emotional turmoil, and the light entering my room wakes me up early. I check my phone and briefly attempt sleep again but don’t succeed. This allergy season, Allegra stopped working for me and I’ve been experimenting with Claritin instead. I tend to feel flat and dull after I take it which means my depression is worse today, and with sleep deprivation on top of it, I’m too exhausted to get up. I lie in bed for several hours trying to find the energy to start my day.
I get out of bed at 11:10AM and start my morning routine: I grab a small pot, fill it with some water and put it on the stove to boil. I’ll then let the water cool to a tolerable temperature to use in a sinus rinse after breakfast, which I do to help lessen the impact of my allergies. I serve myself up a breakfast of rice and beans, the same thing I eat every morning because I don’t have to think to get myself to eat it. While the food is heating up in the microwave, I refill my 32-oz water bottle because, over the course of the night, I have drunk most of its contents. I take off the wrist brace I wear at night to prevent my wrist from re-spraining itself, and then I fetch the sinus rinse bottle from the bathroom to wash it. By the time I’m finished, the food is hot and the water is boiling. The whole process takes exactly 10 minutes.
I sit down to eat and set my timer for twenty-five minutes so that I don’t forget about my water. I’ve been dealing with nausea lately and eating is harder than usual. I take small bites and take my time before I eat more. I manage to finish about three-quarters of the bowl. The timer for the pot of cooled water goes off, which means I have ten more minutes to motivate myself to get up to use it. If I wait too long, the water will be too cool to tolerate in my sinuses. Once I manage to stand up, I mix a sinus rinse packet with the warm water in the bottle, rinse and blow my nose, and follow with a nasal spray.
I sit back down to let it all filter through my sinuses for fifteen minutes. I have to wait those fifteen minutes because the beginning of my physical therapy routine is done lying on my back, and having all the liquids from my nose pulled down by gravity to the back of my sinuses is an intolerable feeling. While I wait, I line up my medications and supplements for the day. My normal number of pills for the morning is nine and I’ve just added two new medications which I haven’t figured out a time for yet. I can’t take them now because if I try to swallow pills while my sinuses are clearing and the swelling is still going down, it might trigger my gag reflex.
Fifteen minutes is up, I take my pills, and force myself to relocate to the living room, bringing my water bottle, cell phone, tissues in case my nose leaks leftover nasal spray, pillow, and laptop. I put on a podcast and lie down on the floor to start my physical therapy exercises.
My current routine, which includes extensive but gentle core work, stretching out my chest and shoulders, strengthening the muscles near my shoulder blades and in my hands, and encouraging circulation in my hands and feet, takes about twenty minutes. It’s followed by twenty-five minutes of foam rolling, starting with my leg, working up to my hip, my lower back, my underarm, and my upper back, and then the same on the other side. It’s excruciating and tiring work but I’ll feel stiff and sore if I don’t do it.
Today, I notice that my hip and shoulder are hurting quite a lot, so I try a few of my tricks. Lying on the floor, I bend my knee, pull my leg towards me, and rotate my hip joint back and forth until I find the place where it’s popping and it shouldn’t be. I go back and forth over this place, engaging my core, trying to make the path smooth again. I sit down on the couch, place my fist between my knees, and squeeze my thighs together. There’s a tiny pop and little twinge of pain in my inner thigh, which means I’ve fixed something. But my pain is still pretty high and my range of motion is less than usual so I’m pretty sure my left leg has gotten sucked into my torso again and is shorter than my right one. I tell my boyfriend that when he has a minute, I need a leg yank.
I lie down on the floor with my legs extended, he grabs me by the ankle, stretches my leg a little, turns my foot slightly inward, and then yanks. I ask him to do it two more times before I feel satisfied with the adjustment. I spend a little extra time rolling over my shoulder and hip with a tennis ball to try to encourage the places that had been squished to relax and go back to their normal position.
Finally, my morning routine is completed with a hot shower to limber up my muscles, using hypoallergenic shampoo, conditioner, soap, and skincare products. Before I put on my clothes I have to put anti-chafe balm on my thighs and under my armpits, despite the weather still being mild, because my skin chafes in all seasons.
Every step of this three-hour routine is non-negotiable. If I’m not doing anything physical with my body, I can delay my exercises til later in the day, but I should expect to be a bit sore if I do so. I get to skip my exercises and foam rolling on the days that I have physical therapy or massage because they serve the same purpose. But on my normal days, if I try to do anything physical before my exercises, even something as simple as walking up and down a flight of stairs multiple times, I’ll be in a world of pain later on.
I’m at a friend’s birthday party, a little low energy but present. I sit down in one of the wooden chairs. The back of the chair is at a perfect right angle from the seat, and hard, making it a very uncomfortable chair for me. I sit anyway, promising myself to keep an eye on my pain levels in case I need to go grab a pillow from the living room.
There are snacks available before dinner and my friend makes sure to point out to me which ones are gluten-free. She carefully slices the bread on an area of the counter where none of the crumbs will touch the food I’m eating. I know that if someone uses a gluten-cracker in one of the dips, and then I eat some, it might make me sick, so I have to choose between getting all my snacks in now, going without, or taking a risk. I usually allow for some risk-taking at parties, to help enjoy myself more.
I sit and make conversation, and then periodically stand up and move around the room. My body’s worst enemy is gravity. The longer I stay in one position, the more time my joints have to sink farther and farther away from their rightful place. If I sit on a large couch and my legs don’t touch the floor, the weight of my lower legs will slowly stretch my knee joints lower and lower, and it is agony to stand up with my legs several centimeters longer than they should be. Every twenty minutes or so, I get up, walk back and forth across the room, and when my joints get tired of standing, I sit again.
After dinner, I set my fork down next to the pile of food sitting on my plate, hoping my host won’t notice that I didn’t finish it. For about a week, my appetite has been diminished and I’ve felt slightly nauseous as soon as I was full. I assumed my stomach was just going through some strange phase and ignored it. But it has continued and so I can’t finish my food. My back hurts. I sat without a pillow for too long.
Dessert comes and I think my stomach can handle it because sugar usually gives it a burst of energy which helps me digest more easily. The cobbler we’re eating goes well with ice cream, but recently, every mainstream brand of ice cream has switched to manufacturing their products in a facility with wheat, which means I can’t eat them, even when they have no gluten-based ingredients. Thankfully, they have a small container of one of the more expensive select brands that still makes their small batches without contaminating them. I typically expect to pay $5 for just a small tub of ice cream.
My appetite problem has gotten worse. Over time it has continued to decrease and the nausea lasts longer. I tried eating pieces of candy with my meal to digest my food, but it didn’t help. I began drinking milk with my food as it seemed to settle my stomach but that stopped helping too. Tums and probiotics do nothing. For some reason, the nausea is worst at lunchtime, and for 2-3 hours after I eat, I feel too exhausted to move. I feel hot, almost feverish, and my heart pounds, as I sit still, trying to digest my food. I can’t concentrate. It gets so bad that one night I opt to not eat rather than risk the consequences of putting anything in my stomach. Over the course of 9 hours, I only eat a few bites of food. I’m a little loopy but mostly okay, which is an alarming contrast to my body’s normal requirement of eating every 6 hours or face a sugar crash.
The next morning, I have a physical therapy appointment and I’m glad. My sinuses are really bad and one thing that helps is the cranial work my first therapist does for me. Our theory is that the inner structure of my sinuses shift and the hole my sinuses should drain from gets mostly covered up, preventing it from draining properly.
Usually, I can force the draining to happen as long as I keep pumping fluids through my nose and use a product called White Flower Oil, which is a bit like Vicks Vapor Rub on steroids. But today, my sinuses aren’t draining at all. The fluid my body is producing from allergies is going who knows where. Normally I would also use cough drops with menthol in them to try to get things moving, but I’m worried the cough drops have changed their recipe, added gluten, and that’s what’s causing my nausea. I don’t have a replacement for them so I’m in a crisis minus one of my tools. I barely eat breakfast. I am miserable.
At my appointment, I explain to my physical therapist my sinus problem and mention my stomach issue as well. She looks at my face, concerned, saying my cheeks and neck are swollen and puffy. She spends most of the session doing cranial work, getting the sections of my skull to shift. She presses her fingers into my lymph nodes and they are all painful and tender. She works hard to get all the fluid stuck around my head to start draining again. Today for the first time, she asks if she can do some work inside my mouth. She puts on rubber gloves, pokes her fingers behind my bottom line of teeth, and strokes from the center of my mouth to the back. It hurts, and she makes a sympathetic noise as she feels how swollen I am.
After some more work, she explains that my hyoid bone, the bone under my chin at the front of my neck, was pulled severely to the right, causing the path of my sinuses to be completely cut off. She says there was excess fluid built up everywhere and that my nausea may have been caused by that build up of fluid putting pressure on my vagus nerve. Ironically my sacrum was totally aligned.
I mentioned at the beginning of the session that I had felt something off in my hips earlier in the week, but the problem kept moving, trying to work itself out, traveling from my hips to my mid back to my shoulders to my neck. She wonders if maybe the misalignment that started in my sacrum traveled to the top of my spine, causing the issues in my neck that prevented fluid from draining. Or maybe I’m allergic to my cough drops and I have an unknown infection that built on top of the misalignment, creating the perfect storm. Or maybe it’s something else. She shows me how to put my own fingers in my mouth to encourage my lymphatic system to drain and she encourages me to continue to massage the sides of my neck too.
I sit in the waiting room before the second half of my appointment, staring blankly at my phone, trying to find words to explain this update in the space of a text message to my friends. I don’t even have a definite answer yet let alone a way to prevent this from happening again.
Most of the time, the many variables that I balance in order to function with EDS aren’t weird to me, they are just my life. But right now, I can’t get it out of my head that I could barely eat and was too fatigued to function all because my sacrum got out of alignment. Some days, my body manages to defy even my own expectations. Today is one of those days.
Today is the last day of Ehlers-Danlos Awareness Month.
Ehlers-Danlos Syndrome is a connective tissue disorder that causes chronic pain, joint issues, and many other health problems. An estimated 1 in every 5,000 people suffers from EDS, but it is severely underdiagnosed, and the rate could be as high 1 in every 1,000 people. The average time from initial symptoms to diagnosis is 10 years. EDS currently has no cure and many doctors aren’t familiar with even the basics of its manifestations.
Folks with EDS call themselves Zebras, because, in medicine, many doctors follow the philosophy, “When you hear hoofbeats, think horses, not zebras,” which means, if the symptoms seem ordinary and common, it’s more likely they are from an ordinary and common cause. But EDS is an unusual illness made up of dozens of ordinary common problems that occasionally become debilitating. The ordinary nature of each of our individual health problems contributes to our underdiagnosis because doctors assume that we are common horses, rather than the rare and extraordinary zebras that we are.
You can learn more about EDS here.
You can donate directly to EDS research and awareness here.
You can read more about my experience with EDS in my blog posts here:
And you can also read my writing on the subject in these external articles here: