Diagnosis of Ehlers Danlos Syndrome and What a Flare Up is Like

Clues From My Childhood

My whole life I had had random pain and injuries I could not explain. I was often told I was faking it or doing it for attention. My parents who were supposed to protect me and take care of me gas lit me my entire life, especially medically. I had a lot of sprains, dislocations and a few bone breaks.  I was insistent on there was something wrong when I was 16. Because I wouldn’t let up, my mother finally took me to the doctor. 

The family doctor I was taken to did a radiographs (X ray) of my knees and it revleaed that I had Osgood-Schlatter disease. Osgood- Schlatter disease is a common cause of knee pain in young children and adolescents who are still growing. It is a condition that causes pain and swelling below the knee joint, where the patellar tendon attaches to the top of the shin bone. This spot is called the tibial tuberoisity. Osgood-Schlatter disease is caused by irritation of the bone growth plate. When a child is still growing, these areas of growth are made of carriage instead of bone. Cartilage is never as strong as bone. High levels of physical stress can cause the growth plate to hurt and swell. 

Considering EDS

I later found out it is a sign of EDS, 

When I was looking into Ehlers dances syndrome, a lot of things from my childhood started to make sense. The joint pain, dislocations, sprains, etc. 

Seeking Diagnosis

Getting diagnosed with EDS was not easy because I am overweight due to PCOS. They told me that I needed to lose weight. I asked them if they would help me regulate my hormones so I can. They said I needed to figure it out. No guidance. 

In 2020 I saw a primary care doctor who told me that he wouldn’t address my weight until I had bariatric surgery. He would not help me with my pain at all. I am all for losing weight BUT having elective surgery during a pandemic is not something I want to have done. It isn’t worth the risk, in my opinion. 

In early 2021, I switched primary care doctors and I saw a new one. My pain was so bad I had to use crutches. Of course, medicaid wouldn’t cover forearm crutches because using axillary ones cause me to dislocate my shoulders. I had a car accident a few years ago where I have a partially torn rotator cuff and axillary crutches aggravate that injury. I very generous member of the community had a brand new set she wasn’t using. I used those until I got my smart crutches. If medicaid wasn’t covering what I needed, I might as well save for something good. 


I saw this new primary care doctor. We went over my medical history. We went through the osgood  Schlatter disease in both knees, my coordination as a child, etc. We also talked about the chronic pain I have had ever since I can remember. I always thought that was normal, that everyone experienced that. 

They did the Brighton score for EDS. They referred me to a geneticist in Fort Lauderdale as they were either one hour north or one hour south. I took the one hour south because there are charging stations going south but not going north. I wasn’t in the mood to risk getting stuck. 

The geneticist did a genetics test, bloodwork and other things. The tests took a while to come back. They also had to wait for medicaid to authorize payment for these tests before I was able to get the results. I have what’s called Hypermobile Ehlers Danlos Syndrome. This is the only type that there is not a genetic test for. There is research to change this but there is none as of now. The primary care doctor helps manage my pain and is currently fighting with medicaid to let me see a rheumatologist. 

Dealing with Flares and What They are Like

After I was diagnosed and I finally had an understanding of my pain and different things I go through. I have had a few major flare ups, ones I recognize as flare ups. I am in one right now. I can describe what it is like. It has been caused by physical trauma, times of great emotional stress or just because it wants to. 

This flare up was caused by someone rear ending me when I was waiting to get on a draw bridge that was currently up. I was on my way to walk a dog for a client.  I was waiting and the person went through a stop sign. They hit my car pretty hard but not a lot of damage was done to the car. I didnt feel it then. I told a friend in the autistic community what happened. They told me with EDS I will feel it. I didn’t doubt them. I did not mention the accident on social media because I did not want people to worry. 

That night I started to feel pretty intense pain. Different from my every day pain. At least it waited until work was done that day. Right from the scene of the accident, I went right back to work. My kids were depending on me. 

I laid down in bed and then I got up again. Thats when I really started to feel it. It feels like every muscle and joint in my body is hitting me with a baseball bat and stabling me with needles. Every movement hurts. I can’t get comfortable in bed. 

Last night, when I streamed for New Years Eve when J crafted all those fireworks and created a space for our characters to sit and enjoy it, I had to take a pain killer. I had to take a pain killer just to sit at my computer. 



J needs some of her scout patches resewn and my fingers hurt so much I cannot sew right now. My joints are all stiff. I had to push myself to sweep the kitchen in a chair. When working, I have to push myself. My clients let me do a shorter walk to accommodate the flares and I am so grateful to them. 

Dealing with Flares at Comic Cons

Last time I had a flare up like this, it lasted for two months. I had to go to a comic con using a wheelchair because I couldn’t walk far just on crutches. From that experience I learned what I need in order to be self sufficient. It is not my kids job to push me. Just wheeling myself manually up the street was hell. We have another con in a few weeks. 

One thing I figured out was that using an oxygen tank holder on the back of a wheelchair, you can accommodate a pair of crutches securely. Last time I bought cane/crutch clips and my crutches fell every 5 seconds. I found a pair of ribbon on the sidewalk and that worked better. Sad isn’t it?

This is the oxygen tank pouch I bought. I tried it out at home. I haven’t had a con since but I will be using it there. 


I also bought a hand bike used from someone locally. It adds an electric motor to my chair to help me out. It uses a clamp to connect to the foot plates. It’s a very handy device.  That is something I desperately needed and they are expensive new. I was just lucky that I found one. 




6 thoughts on “Diagnosis of Ehlers Danlos Syndrome and What a Flare Up is Like

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