So I’ve had this odd habit of popping my hip in and out since I was a kid…anytime I was standing still, I could feel this little bone popping in and out of place when I moved just right. Little did I know, this quirky subluxation would end up helping my doctors finally diagnose my weird heart issues.
I first started getting really dizzy when I stood up too fast in 2014. It happened on and off until it worsened in 2017, and I had to wear a holter monitor for 30 days. If you’ve ever had one of the old school ones, aren’t those random beeps and wires so fashionable?
My 2nd one, post MS diagnosis, was one of those small, fancy contraptions placed right on my skin, no huge hanging box attached. Both times, I ended up with huge blisters and some bleeding. I had the tilt table test and echocardiogram done, too, to no avail. Both showed subtle abnormalities, but nothing definitive.
Why all the cardiology talk on an EDS post? Because it was dysautonomia caused by EDS the whole. Damn. time. (insert eye roll here)
It wasn’t until a couple months ago when I finally heard the words Ehlers Danlos Syndrome out of a practitioners mouth. I went to physical therapy tailored for hypermobile joints, and will eventually receive genetic testing to rule out more serious forms; due to previous tests and the majority of my symptoms, the prelim diagnosis is hEDS, or Type 3. So, what is it?
Ehlers-Danlos Syndrome is a group of hypermobile conditions that are usually inherited. EDS affects the connective tissues, specifically the protein collagen. The genetic disorder that causes EDS results in weak and disrupted collagen production. The genes that are supposed to provide instructions on how collagen is formed are defected, and passed down from our parents.
As I mentioned, my dr suspects I have hEDS, and that it’s been the root cause of my heart issues. Turns out, it’s not technically a heart issue.
hEDS is considered the least severe form of EDS, but it does come with a lengthy set of issues. Hypermobility being the most common, in all types of EDS, incidentally. We can stretch and dislocate like it’s no one’s business. The main complaint I have is the widespread pain in my joints – when all of them are lacking in connective tissue, I guess I should consider myself lucky I almost got 30 years without major issues. Chronic pain, along with muscle soreness and fatigue are all symptoms that come with hEDS.
People with hEDS usually have super soft skin that’s prone to scarring, stretch marks, and bruises easily. In my case, I can imagine myself hitting something and I’ll get a bruise, my skin is so sensitive. It also comes with a huge risk for IBS, since our bowels are made up of tons of connective tissue. Yay for bathroom spray, am I right? I don’t have a heart valve problem, but that’s also an associated risk for certain types. Premature osteoarthritis and chronic degenerative joint disease can also come along with the territory.
Treatment varies from case to case, and if you suspect you may have a form of EDS, it’s crucial that you get the correct diagnosis to get proper treatment. Classic and vascular EDS, amongst the other types, all have different treatments and specialists. I’ve mentioned a few times, but making sure your healthcare team can properly support you is crucial.
In my case, prevention is key. I suffered a slipped disc a few months ago that made it imperative that I get physical therapy stat. This is also a common plan of care for people with hEDS. Improving joint stability with low-impact exercise is what my PT has focused my routine around. If it’s needed, I would get some fancy assistive braces to lessen the burden on my loosest joints.
Obviously, this is just a very basic rundown of what hEDS is. This whole experience has just reinforced my conviction that building a trusted medical team is crucial to thriving with chronic illnesses. I hope y’all are out here building your own!
Speaking about that…
I got good news at my latest doctor appointments, and will detail that in my three-year Rebirthday post in a couple months. How has it already been three years, guys?!
I hope you’re all doing as well as you can in the current situation – sometimes I feel like living in a pandemic is completely normal, and then the next I forget I need a mask to go somewhere for a second.
If there’s anything you want to see here on Stumble Pup, always feel free to drop a comment below, or email me at bri@stumblepup.com
Until then,
