One of my favorite disability activists Annie Segarra (Annie Elainey on Youtube) created the #ThisIsMyEDS tag to raise awareness for the broad individual experiences of people with Ehlers-Danlos Syndrome. This is my EDS.
Part 1: What is EDS like on my body?
Introduce yourself (name, pronoun(s), EDS type): Hi, I’m Arden and my pronouns are they/them. I currently have a diagnosis of hEDS, pending genetic testing results to rule out other EDS varieties.
First things first, in one word how are you feeling today? Drained.
For those who don’t know, can you explain EDS (medically) in a sentence? EDS is a genetic connective tissue disorder related to collagen abnormalities which can affect the skin, joints, and many other parts of the body and its functions.
What’s your favorite analogy for how EDS feels or what EDS is like? Personally I get a lot of bone-on-bone grinding sensations, particularly in my knees. In other areas it feels like a ripping or tearing sensation, like my muscle is being ripped off my bone – this is most common in my ribs, shoulders, and hands. It’s generally followed by an intense burn that feels like someone has stabbed me with a super heated dagger. I also experience electric-type pain and deep throbbing pain sometimes in different areas. My analogy is that I feel like a poorly built marionette puppet, with breaking joints and rough edges that catch and grind on each other with each movement, and sometimes moving in the wrong way can cause a wild and unrealistic-looking movement where a joint moves backwards and gets stuck.
What are your symptoms and comorbid illnesses/conditions? My EDS symptoms are fairly textbook. I have many hypermobile joints, and I experience subluxations and dislocations daily. Some of them are minor and easily corrected with minimal pain, and some are severe and require a lot of effort to reset and ongoing pain for days after a dislocation. TMJ disorder pops up for me every few months, causing severe headaches and difficulty chewing.
I have some level of joint pain 100% of the time, I’m never pain-free. Like many people with EDS I have a reduced response to local anesthetics, which means that when I have dental work or stitches I can pretty much feel everything. I bruise easily and heal slowly. I get frequent migraines.
I experience frequent interchondral subluxation (also known as slipping rib syndrome) caused by hypermobility in the floating ribs (ribs 8-12) which are not connected to the sternum but attached to each other with ligaments. This causes a significant amount of chest and stomach pain and can last for weeks.
Connective tissue issues in the bowel sometimes causes flare-ups of digestive issues like IBS or gastroparesis, which is another source of pain. I rarely feel hungry, I just notice my body getting weak and realize I should probably eat. Sometimes people have to remind me to eat or I have to set phone alarms. My body weight is average, but I do very little physical activity so I don’t burn very many calories.
Chronic fatigue has been a part of my life for years, which is common in people with EDS. Our connective tissue laxity creates blood pooling which creates orthostatic intolerance which triggers, among other things, chronic fatigue. I particularly struggle to stand for more than a few minutes at a time and will typically sit on the floor if I have to wait in line or something. I don’t typically have serious issues with walking, but standing still is another story.
While I don’t have an official POTS diagnosis yet, my doctor and I are fairly certain I have Hyperadrenegic POTS (Postural Orthostatic Tachycardia Syndrome). POTS is a very common comorbidity with EDS, and comes with it’s own collection of additional symptoms including heart palpitations upon standing, trembling, dizziness, excessive sweating, nausea, chronic fatigue, trouble sleeping,. I also have minor heart valve prolapse, which at this point my cardiologist says seems harmless but is likely caused by my EDS.
How does EDS impact your daily life? The amount of joint stabilization I need to use on a given day varies based on the activity level and the current state of said joints. If I know I’m going to be moving a lot such as when I’m traveling or attending a birth, I use KT tape to stabilize many of my joints and may use additional bracing for joints that have recently dislocated or feel especially unstable. I would like to purchase custom finger splints to reduce finger pain since this has been beneficial for many of my friends with EDS, but it’s a significant financial investment I’ve not been able to make as of yet. I use KT tape to buddy splint my fingers when I’ve fully dislocated one, which thankfully doesn’t happen especially often. Most of my hand pain is from over-extending the joints doing normal everyday tasks.
Because of chronic pain, I frequently take NSAIDs to take the edge off the pain and reduce swelling around recently subluxed or dislocated joints. It does not cause a significant pain reduction, but it provides some relief to make it somewhat more bearable. I use Excedrin Migraine fairly frequently for migraines or severe tension headaches. I use some CBD products to reduce localized pain and help me achieve deeper sleep. I don’t leave the house for more than a couple of hours at a time when I can avoid it because it wears me out. I sit down constantly because standing is very difficult for long periods. I rely on other people to do a lot of physical tasks when possible so I can preserve my energy and strength.
All things considered, my EDS is not as physically disabling as it is for many folks and I’m generally able to arrange my life around my needs in a way that works for me. Everyone’s experience is different, and I know that my needs and experience may totally change in a few years. I’m thankful for a diverse EDS community to rely on for their advice and experience, whatever comes.