People with EDS are sometimes called Zebras.
Fuck that. I’m a goddamn magical unicorn.
I’ve talked about celiac disease before. It’s annoying but ultimately not the worst thing that I have to deal with. It’s come up before because we talk about the fact that no, gluten isn’t going to make my dick fly off.
(Because my dick is in a drawer next to the bed. Thanks Hitachi corporation!).
I don’t talk about Ehlers Danlos as much because, first, it’s really personal and I don’t want pity for what I’m going through. I just want better medical care. Second, the thought that someone else is in chronic pain makes people uncomfortable. And then it makes people ask questions.
And then it makes people, even science minded people, skeptical. Not capital S, Skepticism-GMOs are fine-vaccines are good for you-shut up and take your science- Skeptical. But skeptical like “you cannot possibly have all this shit wrong with you” skeptical.
Trust me, I prod my doctor about that every time I’m in for my more-frequent-than-I-would-prefer doctor’s appointments.
“I can’t possibly have all this shit wrong with me.”
I am sure that, when they were passing out bodies, I got a genetic lemon and somebody fucked up. Unfortunately, unlike an honest car dealership (lulz), I can’t trade this one in, and the best that I have to deal with is whatever modern medicine will hand me. So strap in, have a drink, I’ll try to make you comfortable.
“You’re not supposed to bend that way.”
It started when I was stretching for volleyball when I was a kid. Everyone else would pull their arms over their head and stretch like a normal human being. A little bit of a tricep and lat stretch. My shoulder blade, with a normal pulling motion, pulled halfway out of the socket.
My friends thought it was alternately gross or a neat party trick. By high school, my left shoulder did a weird popping motion. With all the volleyball I played, and the fact that I could spike with both arms, I eventually fucked up my left shoulder with damage to all of my glenohumeral ligaments and my labrum. Over the course of six years starting my junior year of college, I needed three shoulder operations.
I just have a bad shoulder, right?
Up came the pain.
I’ve talked about my headache before. It was the first big sign that this was more than a shoulder I screwed up from one too many dives on the high school volleyball court. Who the fuck gets a permanent headache? It’s not normal.
The first week of it you think… this is going to go away. I’m overtired. I’m dehydrated. MAYBE I DID LOOK TOO CLOSE TO THE SCREEN AT WORK. GET ME A HIGH DEF SCREEN!
The second week, you’re alternating between denial and bargaining. This is not real pain. I was hallucinating the last two weeks. I’m not really FUCK WHY IS IT BACK AGAIN WHY WHY WHY WHAT IN GOD’S NAME DID I DO TO DESERVE THIS I’LL DO ANYTHING TO MAKE THE PAIN SHTAAAAP!
By month two, I was damn near losing my mind. I was wrongly diagnosed at first with cluster headaches. It was a constant dull ache, a stabbing pain centered around my left eye that would flare up about 60 times a day for anywhere from 30 seconds to several minutes. It was coupled with tearing, left nostril congestion, and the left side of my face would droop like I had a stroke.
The pain is similar in terms of intensity to cluster headaches, but clusters last for an hour or so. They’re also known to be seasonal, attacking some sufferers at the same time of day or year on the clock. They don’t come and go off and on all day every day.
As bad as it was for me, I was living with my mother at the time. I’d moved home after ending one job a few states away and starting one job locally, and wanted to save some money. Then I stayed at home for longer because we didn’t know if I had… a brain tumor? MS? Squirrel? And my mother, saint that she is, felt helpless while she watched me in pain every day. At the same time, my brother was suffering with lupus across the country. Whatever my mother was going through watching it all, she always smiled, always had a hug. One of few things that we found helped was caffeine. It at least made the headaches a little less evil. I was working second shift at my lab, and she tended to wake up before me and make coffee.
There are little things in life that you might not think matter, but curling up on the couch clutching a cup of coffee that my Mom had used to nurse some life back into me when I was just trying to not be miserable? It got me through some days.
As much as I tell people now not to try to be their own doctor, I was desperate. I started researching headache variants online because the rare headaches seemed to be a blind spot, even amongst neurologists. An average neurologist, even specializing in headaches, can go an entire career without seeing a headache variant like mine. I went through eight neurologists before finding one who specialized in craniofacial pain. Some doctors were dismissive. One tried to take me off a medication that was working solely because she thought I was “enjoying the weight loss side effect.” It was true, I wasn’t against the side effect, but I was happier than anything that it was making the pain not be a thing.
Unfortunately, it made me understand why people turn to alternative medicine. We still don’t have a perfect understanding of some of the more difficult to treat conditions, and desperation and frustration will make even science minded people leave the system and seek other answers. I went organic. And vegan. And anti-GMO.
(You guys know the punchline to that though, right?)
Depending on the doctor I go to, I still have doctors who diagnose me with a different headache condition separate from EDS. The closest condition they can figure is that it’s a trigeminal nerve headache that’s related to Ehlers Danlos or that it’s SUNCT Syndrome. Whatever you call it, it’s not a migraine. I’m not light/sound sensitive, it never makes me nauseous, and man, without the medication that they took a year to figure out, I’d be in such intense pain that I wouldn’t be able to function.
But I thought that was the end of the story. I thought… I’m in my late-twenties. I’ve already been through enough of stupid painful bullshit for a lifetime. Can I go through the next thirty-ish years of shit not hurting? That’s a normal age for stuff to start breaking down, 60ish. I could live with that. Is there a goat somewhere that I can sacrifice to make that be a thing?
Hip pain, scoliosis, and rip dislocations, oh my!
I ran a few marathons. Because I’m an idiot. And because one of the few things that made my head feel better was working out.
(Like I said, it was definitely not a migraine).
But, the downside to this is that if you have already-bad-joints, you will fuck them up more without knowing it.
I did something to my left hip on a seven mile training run. My doctor, kind as he was, didn’t see anything in it on the x-rays or initial MRI. So I ran two marathons. During the time that I was marathon training, I also had a car accident.
They spotted scoliosis on my spinal x-ray. Huh. That was new.
But but but… I CAN’T HAVE ALL THIS SHIT WRONG WITH ME. I’M A GODDAMN MARATHONER. THE MILES COWER BEFORE ME.
(I sound like a really serious scientist right now, amirite?)
After I ran my last marathon, I took time off to finally investigate why it felt like an angry honey badger decided my left hip was his hidey hole. Finally on an MRI with contrast, they spotted a torn labrum. In the post-op x-rays, they saw that my hip sockets are mal-formed, and I’m going to need a replacement or a restructuring by the time I’m 50.
And then I dislocated my first rib. At which point I thought I should have started asking questions about a decade ago.
Ehlers Danlos Syndrome, the key to life, the universe and everything.
So I had a few friends with Ehlers Danlos who said “why the fuck haven’t you been tested for Ehlers Danlos because no really why the fuck?”
That sounded medical, I’m sure.
But I had the symptoms. And I’d moved at this point enough times that my doctors could have missed over a decade of medical history. Between work and school, I’d lived in four states and two countries. Even calling every doctor’s offices that I’d visited in every state and country and requesting all my old medical records, it would be no guarantee that my new doctor would just magically see a pattern. So I requested an appointment with a rheumatologist and said “will you just take a look at my joints?”
At the beginning of the appointment, he said “there’s no reason to suspect that you have Ehlers Danlos,” because how many doctors love self diagnosis? About as many as comics who enjoy being told “hey, that’s funny, you should use that in your act.”
(Are you new? The number hovers at around zero).
It’s understandable, because when you hit Google MD, you tell it that your back hurts and it turns out that you have testicular cancer even if you don’t have testiculars.
At the end of the appointment, after doing a full joint exam, seeing the range of flexibility, my flat feet (that I didn’t even know was a symptom), scoliosis, and history of dislocations, he was giving me instructions on how to handle life with Ehlers Danlos.
Finally. There’s at least a reason for life the universe, and everything. I had a 42.
Where does it hurt?
I still have to manage my headache pain with medication. And some days my shoulder hurts because if you have three operations worth of scar tissue in a joint, it’s surprising if it doesn’t hurt. The scoliosis isn’t terrible, but it doesn’t exactly tickle.
Exercise is rarely what does damage. Most recently I dislocated a rib so severely in my back that I’m on a round of steroids. This is the second time this has happened. It wasn’t from heavy breathing from exercising (because at least the breathing from exercising is rhythmic and steady). It wasn’t from being hit or bumping myself.
It was from a really hard sneeze.
I’ve been in more pain this last week than I was after each of my shoulder operations.
I made a video talking about it this week to address why I haven’t been writing as much lately. It’s difficult to focus when I’m in severe pain. I’m on a round of prednisone for the inflammation and oh man, they do make you hyper (as was evidenced by the rapid fire talking in the video). I want to clean everything in my house, run a marathon, cook everything in the kitchen, record a new video every hour, get a pet dinosaur, get six pet dinosaurs, give Science Dog a bath, and did I mention…
There are negative side effects too.
Like bloating. And weight gain. And getting chipmunk cheeks. And the day after you get off of them, you feel like it’s the worst caffeine crash of your goddamn life. If you’re awake for four hours, it’s a lot.
It already feels a lot better than it did a few days ago. It’s a good start. But steroids every time something hurts is not an option. It suppresses the immune system, thins the bones, and did I mention weight gain? As much as I’m capable of loving my body, I don’t want to buy new clothes literally every time I sneeze. Also, if I have a disorder that causes joint pain and dislocation, weight gain can easily exacerbate joint pain.
I’m being very careful about my diet lately and counting macros like a fiend. And when my joints allow, I exercise. More yoga, more cycling. As much as it pains me mentally, less running.
What are the impacts on the life of someone with this disorder?
For people without a chronic condition, pain is a sign that something is severely wrong. For someone with a condition, it’s just Tuesday.
It’s different for everyone. This may surprise you if you don’t know anyone with EDS, but I have a mild/moderate case. I’ve seen colleagues need to take an entire year off from work to get their spine fused. It can be a nasty bugger. It leaves people in chronic pain.
Right now people are talking a lot about opiate pain medication in the media. There’s a lot of misunderstanding about their role in the pain sphere. Is there a role for these medications? Absolutely. Are they overprescribed sometimes? Absolutely.
I am rarely on opiate pain medications. I’ve taken them this week because, when it literally hurts to inhale, that’s a good litmus for taking strong pain meds. Most of the time my various little aches and pains are nipped by anti-inflammatories. I know people with EDS who need opiates on a regular basis and handle them under doctor supervision and monitoring with regular drug testing to prevent doctor shopping and other types of abuses, and I know people with EDS who don’t need them at all who have similar physical problems. A few years ago, pre-headaches, I probably had a lower pain tolerance. Being in chronic pain changes how you handle it. Now, even when I’m in severe pain, I’ll go for hours before I even reach for an anti-inflammatory, thinking “this will pass.”
The handful of little problems that you don’t think of are the worst part. I’ve had to move for work a few times, and it’s landed me in different medical systems. If you don’t have any conditions, all you think is “will my doctor warm the stethoscope before applying it to my back?” If you have a handful of conditions to manage, it’s anxiety provoking.
Will the doctor try to change my medications that are working well?
Will they try to re-diagnose me?
Will they take my conditions seriously?
When last I changed systems, I got a great neurologist. The time before that, the neuro tried suggesting four different new meds before I said “no, really, the one I’m on is great, I’m not here for a ninth opinion, I’m here because I moved across the country.” The rheumatologist in my new system had never treated for Ehlers Danlos Syndrome and said that rheumatologists didn’t treat Ehlers Danlos.
That thing I said earlier about understanding why people seek out alternative medicine? Yeah.
Where do I go from here?
The thing with a chronic condition is that there’s no cure. But there’s good news and it has nothing to do with my Geico payment.
As much as I could sit here and whine about it (which, I apologize if this writing has come across as whiny), it’s just life. Most of the time, I’m fine. This is the first time in a while that I’ve been incapacitated by something, and it’s reminded me that this disorder is much more than taking a few pills every morning. Average day, I wake up, take a few pills, and get on with my day.
New therapies are coming out all the time for EDS, and with more awareness, more doctors are going to get involved in research. It’s generally been defined as a rare disease, but rates of diagnosis have historically been low because of a lack of awareness even within the medical community. With more awareness will come more accurate diagnosis and better treatment plans both to prevent pain and help care for it, hopefully without long term use of addictive medications.
If you have a friend in your life with EDS, listen to them. The suffering is real, and it does suck to not know what part of your body is going to hurt next. From sneezing.
As for me? Don’t worry about me. That job is for my doctors and for researchers. And my family and loved ones who are far too kind to a loud mouth jackass like me, but the worry is not for you, the very kind folks across the internet who come to my website generally to be amused by my rantings about science. And as we’ve seen over the long arc of history, things are always getting better in medicine. And it’s going to get better.
And I’m going to be a happy unicorn. Or zebra. Whatever.