I started typing a draft in this subject this morning before I finally managed to fall asleep, but it's such a heavy subject and difficult to write about and explain so I decided I'd leave it to a more awake moment, plus my hands were killing me this morning.
So what does Ehlers Danlos Syndrome feel like? Well, seeing how the syndrome affects individuals very different and people experience things very different, I can only try to describe what it feels like for me. Maybe someone will recognize themselves in it and maybe it can give someone without a connective tissue disorder an idea about what it is like, living with this condition.
The hallmark of my type of Ehlers Danlos Syndrome is hypermobility of the joints, the severity varies between individuals and joints. I have some joints that are only mildly affected and other joints that are more affected. Having to constantly compensate for the hypermobility to keep everything in place is very tiring, and with time very painful, muscles are working overtime and never really getting to rest, not even when you're laying down, even though laying down often helps some. Keeping your body upright feels a bit like Pinnochio when he first loses his threads- wobbly, balance issues and poor proprioception and often poor posture. Every move is carefully planned to avoid injury and extra pain.
Even just a small thing as yawning can cause you an injury. Last night I yawned and happened to look down slightly at the same time, which resulted in my neck popping loudly, causing pain, dizziness and slight nausea instantly, and discomfort and a spinal headache today. I've spent all day in bed today, over a yawn yesterday!
Muscles easily tire from constantly compensating the hypermobility, doing any regular task can be both tiring and painful. Muscles often feel like a violin string about to snap due to how hard they work all the time.
The physical pain I live with around the clock feels like getting stabbed with invisible knives in random places, all while having a toothache like pain deep inside the muscles and joints, and the feeling of someone trying to separate you using a crowbar. The crowbar feeling is mostly in my SI joints, while the stabbing and toothache like pain can be anywhere.
Today my hands are hurting pretty bad, maybe from my new iPhone being too slippery to hold as I haven't bought a case for it yet. So I've actually taken many breaks in typing.
My neck and head feels like that of one of those bobble head toys. It feels unstable and I get spinal headaches that are intensity wise sometimes even worse than a migraine, though without the light and sound sensitivity that I always get with actual migraines- that's one of many ways for me to tell them apart.
I feel joints and ligaments moving abnormally as I move, sometimes I have to stop in mid action because I get a sudden onset of pain in a joint and have to put it right again, sometimes just a flick is enough, other times I might have to manipulate the joint a bit.
Fingers tends to lock and swan neck while doing very simple things such as typing. The little pressure needed to press a key can be enough to sublux something. Even using a touch screen can at time have fingers lock on me pretty often.
The issues with POTS and autonomous nervous system is even more hard to describe. I'm not even sure I can put words on it to be honest. The only I can put words on really is the broken body thermostat as I can go from freezing to sweating to freezing in the blink of an eye, all while the temperature around is the same.
Fatigue and insomnia is another big thing. Imagine never feeling rested and wanting to sleep, but not being able to sleep properly and spend most nights awake due to pain and an overactive brain. Sometimes only sleeping maybe 7 hours in a 3 day period, sometimes sleeping 10 hours per night or more and feeling worse when waking up than you did when falling asleep. The best way to explain the feeling is to imagine being a rechargeable battery that's constantly low on battery yet unable to charge full.
This post is merely touching the surface, but it's really too difficult to write about, and trying to is exhausting. Exhausting to the level where I'm actually going to sleep. Battling the spinal headache certainly doesn't help now.
Pain flares like the one I'm currently experiencing can either make me sleep all the time, or keep me awake. The sleep version isn't really sleep as in sleeping, it feels more like falling unconscious so my body can get a break from pain signals. It's not a restful sleep at all.
Alright. I'm fading and still need to get up to turn off lights.
What an excellent post, Jen! I can relate to a lot of this! I usually try on average of 2 or 3 times to get my right shoe on, because sitting on a bed and getting my foot up where I can reach (I'm 52 now, so I'm getting into some of the late EDS stiffening phase issues) makes my right hip start to slide out of place and is excruciating. My gait is really off now from knee and achilles tendon injuries; I limp and that right hip is in a greater degree of pain now than the other side, with walking and even sleeping, and really 24/7 is one of my worst joints. It subluxes (subluxates?) but I never let it slip completely out of joint. I instantly snap my leg and foot back down to the floor and wiggle a bit until it rights itself. I will sleep in my work shirt a lot of nights, because it's a t-shirt I have to pull of over my head. Raising my sore loose shoulders to pull my shirt off over my head can make them hurt even worse, enough to keep me awake all night, so I often don't chance it anymore. I wait and remove my shirt in the morning, after my shoulders have had some rest. For the same reason, hair washing doesn't happen very frequently anymore, and is a real chore for me. Fortunately, my hair has become very dry and doesn't need washing often at all. This has happened along with the drying of my eyes, which no longer produce tears. The neck issues I can definitely relate to. I no longer drive--I use public city transportation, buses and light rail trains. My doctor is a pretty lengthy transit journey away (more than an hour, though it would be probably 20 minutes by car) and I know whenever I go to see him about a problem that I might end up paying for it with one of the migraine-like spinal headaches you mentioned. (I get regular migraines, too, with aura of smells, flashing lights, blurred vision, sometimes scintillating scotoma; and vestibular migraines--I now have tinnitus 24/7 and so there is never ever peace and quiet in my world now.) The seats on the buses and trains are horridly uncomfortable to me and there is no neck support at all. Behind you is air, and another seat. My head jostles all around, as those rides are very far from smooth. City buses in Portland are not like a Greyhound experience or anything, and are often very crowded. This causes me to be wedged into a certain position beside another person, and therefore not able to constantly shift positions as I am otherwise apt to do (because keeping the same one for more than a few minutes really hurts.) When I do have a seat to myself for parts of a journey, while each new position also hurts, the way I cope is to keep the most intense pain at least moving around, by shifting my weight different ways. It's better than letting it build in just one position, with no relief in those spot, and then joints locking in that position so that it's extremely difficult to get back up and walk when I reach my stop. My neck and spine hate it all, no matter what. Typing causes me to get locked wrists and sometimes fingers, as well. And I haven't handwritten letters/Christmas cards, etc. in years because that can be even worse. I have digestion issues; also dizziness, palpitations and brain confusion after long standing (which I have to do at my job) and other autonomic challenges. I find that other people, when they see me maybe not limping quite as badly (because I've had a couple days off from work to rest from so much standing/walking) will tend to assume I'm feeling great. "Oh, you're doing better today!" They think it's like only having arthritis by itself. They don't know how many other things are going on, on the inside. I may have just come back from a doctor or PT visit, and hurt all over from riding transit, and am building to one of my massive headaches. They aren't able to see those parts of EDS, and so many others. Thanks for taking the time and energy to write all of this!
ReplyDeleteAlice,
ReplyDeleteMy girlfriend has has EDS and POTS for a while now, but she has always wanted to be a doctor. I worry all the time about her and about whether or not she will be able to fulfill her dream, as she can hardly make it to school three days a week due to many of the same symptoms you an Jen described. Do you think that she will be able to attain this job, going through med school and all, even though she is so sick now?
Thank you and have a good night, I hope my girlfriend stays strong just like you seem to be!