Today I wanted to talk about EDS, a condition I was diagnosed with in Feb ’18. One of the bigger reasons I decided to start this blog. Ehlers-Danlos Syndrome is considered a rare disorder, but is thought to be very under diagnosed. When I got the news of having this I felt a bit lost. A month or so before being diagnosed I was on YouTube looking at whatever. I think at the time I was very into watching medical videos. I remember watching on of a girl, I believe from Australia, who was giving her story of having EDS. I had never heard of it before and just thought it was interesting. Fast-forward a month, I decided to see a chiropractor thinking my pain was just due to needing to be realigned. At the beginning of the visit the nurse asked what brought me in and I told her I had chronic pain everywhere, and not being able to get much relief. Like most people, when I said I had pain everywhere she kind of laughed a bit as if I was exaggerating. Fine with me, it’s very common for people to be a bit dramatic. Once she finished getting all my info, a little while later the doctor came in. And again, after reading that I had pain everywhere, he laughed a bit. Once I started to really explain what I was dealing with, he realized I wasn’t exaggerating. I really have pain every where. Days can vary on what hurts more and what’s not so bad. Then he moved on to do my physical exam. Once he finished the exam, he asked me if I had heard of Ehlers-Danlos Syndrome. Shockingly I had! The chances of me watching a random YouTube video, that is considered some what rare, and that being what the chiropractor suspected. I told him I had, but didn’t know too much about it. The doctor told me he had two other patients who had EDS, and that everything I described and with the physical exam, I was very similar to them. He suggested I go see a geneticist, as this was the only way to get a definite diagnosis for the condition. Now, but to the actual appointment. I explained how I hurt from head to know, with emphasis on my neck, behind my shoulder blades, all down my spine, my lower back, my SI joints, the sides of my hips, and my knees. I had gone to physical therapy for about 3 months straight within the year before hand. They constantly would try to adjust on SI joints but once I moved they would shift again. Knowing this he told me he would not do much adjusting because it could make things work. I was pretty upset to hear this, I was really hoping all I need was a quick adjustment and I’d be good to go. Of course not. My next step was to see the genetic doctor. Once I was able to see this doctor, he did a full medical history of everything I could possibly think of. Long story short (it was almost a 2 hour appointment) he confirmed I had EDS- hypermobility type. Hearing this I cried a tiny bit, it was a relief to have an answer. I was a relief to see a doctor, or anyone for that matter, who didn’t think I was crazy or seeking attention when I would say my whole body hurt.
What is Ehlers-Danlos Syndrome? It is a connective tissue disorder. A defect in or lack of collagen in your body. If you don’t know, your entire body has collagen. So this can affect literally any part of your body. The main symptom is being hyper mobile. This means your skin is stretchier than normal. Your joints are very loose and not stable. There are 13 different types, some more serious than others. I have hypermobility type, this type luckily is not one of the worse ones. But everyone experiences it different and it can still be serious. There is no cure, no specific treatment, not even a specific doctor. All there really is to do is manage your symptoms. I have decided to see specialists for what bothers me most.
I decided to write this post because there is not much out there regarding EDS. I don’t have a doctor to go to who is well informed of it. I don’t know anyone else with it. So I wanted to tell my story for other people out there who may have it too. I look healthy, but on the inside I am not. This is why EDS is often referred to as an invisible illness. I am in pain every day. I’m not even sure if I know what it’s like to not have pain. I have a lot of sublaxated(?) joints, no dislocations yet! We think a lot of my pain is my muscles being exhausted, over used from trying t hold my body together. I can only get my muscles to relax if I consciously think to relax a specific spot, once I stop concentrating on it the muscle tenses right up again. Obviously this will lead to pain. I take a lot of medicine. I am only 29 and I still have a hard time being okay with taking so much medication. One of my doctors tries to make me realize overall it boils down to quality of life. So if lots of medicine is what I need to live a happier life, then that is what I need to do. I do yoga almost every morning and I have changed how I eat a good bit. Why not try the easiest thing possible that may make any difference? This is how my journey has been so far, hopefully I can help someone else.
Thanks for reading!!
Hi, I'm Kellie, but I like my middle name too Andre', so call me Kell Andre'. My alter-ego is Blossom, hopefully I'll be traveling a lot in the near future, and leaving the pain behind me!