Hello! My name is Charleen, welcome to my bloggy! I wanted to start a website about EDS to provide resources to other people who are trying to get diagnosed, think they may have hypermobility or EDS, or are already diagnosed, as well as resources for loved ones of people with EDS or Hypermobility.
I am diagnosed with hEDS, or Hypermobility Ehler’s Danlos Syndrome.
If you are here you most likely know what that is, but in case you don’t, I’ll link you to a very reputable and informative website here.
I have been hypermobile my entire life. When I was a kid my grandparents used to have me lay on the floor and do party tricks for their friends. My fingers and hands are extremely hypermobile, and have always been a topic in school and people were always wanting to see me “do that thing with my fingers.” They bend completely back at the tip knuckle, and my hands collapse together completely.
It has honestly been really hard to grow up with hands like this. Aside from being really weird looking, I have always struggled to grasp things well, like pencils for writing. As I got older they have started to bother me a bit with aching and stiffness, and weakness especially. My ligaments are so weak in my hands and wrists, I have dislocated my fingers and wrists multiple times, usually when trying to hold on to something heavier than a pound. I have always wondered why my fingers and other joints were so flexible, and often wondered if it was just a birth defect. Little did I know just how accurate that was.
I took up running a few years ago to combat a cigarette addiction. I started slowly of course, but eventually was able to run a half marathon at a time without stopping! (That is 13.2 miles) I quit smoking January of 2014 and have not had one puff since. I got very into running and eventually started having pretty severe pains in all of my joints, but mainly my feet, ankles, knees, hips and my back.
Eventually, I found out I had prolapsed my uterus almost completely out of my body and had to have an emergency hysterectomy in 2015, just a year after taking on running. I had ran my organs out of my body! Still, I had no idea I had a connective tissue disorder.
I had two hernia repairs in my life, and am told my abdomen is “riddled with hernias”, but they would not need surgeries like my first two.
I started working for a clinic as a medical assistant and one day was showing a Physician Assistant I worked for my bendy fingers. He asked me a few questions about other flexible joints and told me I most likely had hypermobility joint syndrome and to maybe see a doctor if my pain was only getting worse. I did, and went a saw a reputable rheumatologist in our area. He did a slew of bloodwork, only to diagnose me with rheumatoid arthritis and prescribe me dangerous and serious drugs. I had no symptoms of that disease and knew from working with so may RA patients what it is I should look for.
I quickly got a second opinion and the rheumatologist I found chuckled when he looked at my bloodwork and told me the tests that the previous Dr. had used were archaic, last used to identify markers of RA in the early ’70s. He assured me I had no signs of RA but was concerned after a full physical and some findings regarding my heart (a murmur, unspecified) that I may have something potentially more serious. This is the first time I heard of Ehler’s Danlos Syndrome.
He and my new primary care doctor ( I had left my previous care team, as they were not interested in my lack of strength in my joints and my pain, they attributed it to muscle spasms and sent me on my way with many different muscle relaxers.)
Before my visit to the new Dr, Dr. Armstrong, I had an incident last Thanksgiving, before my genetic tests, where I bent to pick something up and felt my ribs shit and pop and had excruciating pain in my back which sent me to the Emergency Room. They diagnosed pulled muscles. I couldn’t figure out why I was having all of these pulled muscles and muscle spasms in my neck and other places, and when I talked to my new doctor about it, he explained subluxations to me.
Subluxations are where your joint partially comes out of joint and slips back in. It is not a dislocation, but the muscles surrounding that joint will spasm to keep the joint from moving out of place. It explained all of my pains! As far as the ones in those areas.
I am still seeing my primary care doctor as well as Dr. Armstrong to treat my joint disease, but they have both been very honest with me that physical therapy, medications, and surgeries are my only real hope.
I will have to have both hips and both knees replaced int he next 3 years. I am looking forward to it, because the subluxing is getting so bad, despite regular physical therapy and my newest addition of braces. I want to not have to worry too much about these joints going out anymore. I wish I could have it today, but as I am starting a new job I have to wait, and the treatment I am having right now should stave off surgery for at least that long.
I struggle every day. I have gone downhill very fast after my surgery for my uterus. It seems like I have a new diagnosis or issue every week. And that isn’t too far from the truth. I will continue to get worse. Someday I will be unable to work. But I will put it off as long as I can. I am lucky to have an amazing medical team and super supportive friends and family members. I am blessed, and we did rule out any of the vascular types with genetic testing, leaving only Hypermobile Type EDS as the culprit, and for that I am grateful! Thanks for reading, please feel free to share your story with your journey through this disease, I’d love to learn more about you!