May is Ehlers-Danlos Syndrome Awareness Month. This is important to me because I have Ehlers-Danlos Syndrome.
Two years ago, I posted about my illness and experiences with Ehlers-Danlos Syndrome. Today, I hope to raise awareness and to offer some hope for EDS survivors.
Ehlers-Danlos Syndrome is a genetic disorder that affects the body’s production of collagen. Considering that 30% of your body is collagen (factoid of the day), that means that 30% of my body’s systems are a bit wonky: skin, ligaments, tendons, internal organs, etc.
My post last year explains in detail what EDS is and what its effect is on a person. But here’s the short version. EDS causes every collagen cell to be faulty and programmed to be too stretchy. This means that skin, tendons, ligaments, and other collagen-heavy body parts are super-stretchy and flexible. For example, I can touch the tips of my fingers to the back of my hand. Joints are very unstable, painful, and dislocate often. Oh the stories I could tell about dislocated wrists, hips, ribs, and knees! Other effects are chronic systemic nerve inflammation and pain, easy scarring, eye and vision problems, digestive system problems, vascular problems, and increased overall sensitivity (food allergies, contact reactions to chemical substances, etc.). Pretty much anywhere there’s collagen, we’re screwed. A good way to think about EDS if you’re not familiar with it is that it feels like extreme rheumatoid arthritis in every single joint, with the addition of dislocations and lots of other nasty side effects when you least expect them.
There is no cure for EDS. There is little hope for a cure. There are only limited treatments to ameliorate the chronic pain and over-flexibility.
Two years ago my health was quite poor. I was walking with a cane, on five different medications for pain, and dealing with the mental and memory side effects from these medications. And I hurt…a lot. I didn’t realize how bad it was until I was on the other side of it. Looking at photos of myself from this period, I look horrible. I look like a different person.
This year I am very pleased to offer a ray of light for other EDS patients. I got tired of my limited life and just plain decided I’d had enough. So I fought back. It wasn’t easy, but it worked.
A year ago I underwent a medical process to come off of the opioid painkillers. It’s called an induction and it sucked. Basically, I cut off my medication cold turkey and then went into withdrawal for 48 hours. Yes, that’s as bad as it sounds. At the point that I was in “moderate withdrawal,” my system was flushed with another medication that fills the same pain receptors in the brain that the opioids did, but that medication is a lot easier to come off of (it took me a few months). The withdrawal is everything that movies and television make it look like—nausea, flashes of hot and cold, uncontrollable movements, anxiety, difficulty thinking straight. I was convinced that I was dying—everything in my body and brain told me I was going to die, no matter the doctor’s reassurances. It was awful.
But the end result was wonderful. I am now off of all opioids and 2/3 done coming off of the one remaining non-opioid pain medication I am taking. I feel so much better. A few months after coming off of the medication, I found that my pain levels were reduced by about half. My theory is that the hyperalgesia caused by years of use of strong pain medication was creating pain where there was none before, creating more pain receptors ad infinitum.
In addition to the medication changes, I also stopped using the cane after a few months of intense physical therapy and exercise to strengthen the muscles around the joints the cane was supporting. Again, I just decided I’d had enough and did what I had to do to get myself where I wanted to be. Yay no cane!
I still do have joint pain every day, especially in my spine and hands, but my overall chronic pain is not nearly as bad as it was before. I still have limited mobility and have to be very careful about what I do physically. I still dislocate things, though less frequently (I think now that I’m actually feeling all of the pain my body is experiencing, I get the early warning signs that I should stop a potentially dangerous activity). I can go hiking, walking, exercising, typing, writing, and cooking for much longer periods than I could before. Despite all of the challenges and modifications I have to make, the important part is that I have a big part of my life back.
So why did I share my illness two years ago? And why do I share what’s happened since then now? Simple. In true librarian fashion, I want to share information. I want to educate people about Ehlers-Danlos Syndrome and I want to hold out a thread of hope for other sufferers of EDS. It can get better. You can adjust your life in a positive way, not always letting the disorder and your limitations rule your world. I’m happy to help, advise, support, and listen if you want me to. Pop me an email at LibrarianInBlack@gmail.com, DM me on Twitter at @TheLiB, or leave a comment below.
To learn more about Ehlers-Danlos Syndrome, check out the Ehlers-Danlos National Foundation , Ehlers-Danlos Network, and the awesome resource list built by the amazing librarian Rick Roche: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources.