Musings of a Medical Zebra

The First Clues

I mentioned in my second post that I was diagnosed with Ehlers-Danlos syndrome (EDS) in March of 2005.  My symptoms, however, began many years prior. My first experiences with EDS occurred as a teenager. My left hip would occasionally dislocate when I’d bend over to pick something up and my shoulders would pop out when doing large arm circles in PE. At the time, I didn’t think anything of it. The dislocations weren’t painful, so they didn’t seem worth mentioning. Actually, I do recall one of the dislocations being painful. It occurred during my junior year of high school. I was lying on the couch studying, as I often did. My right arm was propped up and my head was resting on my right hand. All of a sudden, I felt my jaw slip. Realizing that something had just gone horribly wrong, I sat up and wiggled my jaw around. I couldn’t open it very far and the right side hung farther down than the left. I decided not to tell anyone about this experience for quite some time — actually it turned out to be a year — because I was more concerned about how my doctor would get my jaw back into place than I was about the pain. I kept picturing a large man yanking violently on my chin until I heard and felt a loud popping noise (and immense pain). It seemed like a better idea just to keep quiet for awhile.

That was the worst dislocation I suffered until Oct. of 2003. At some point during that month, I remember falling asleep on the couch. Normally, I sleep with a pillow between my knees. That night I forgot about the pillow and woke up with a dislocated hip. In retrospect, I know it was a dislocated hip. At the time, I wasn’t sure what happened. I just knew it was very painful. There was a constant burning sensation in my hip that lasted for several days. When the intensity of the burning decreased, I thought my hip was going to be okay. I didn’t see a need to visit my doctor. As the weeks went by, the pain lingered. I developed a noticeable limp, and my husband insisted that I buy and use a cane. I bought a cane that weekend and called my doctor a couple days later. I was diagnosed with trochanteric bursitis. I was given a prednisone injection and sent home with some pain killers/anti-inflammatories, Relafen. My doctor said that I’d need to get another injection if the pain in my hip didn’t go away in three weeks.

I left the doctor’s office and headed home. An hour or so later, it became difficult to walk on my left leg – the leg where I had been given the injection. My left knee didn’t seem to want to bend, and the pain in my hip had increased significantly. I relied on my cane heavily for about a week. I continued to take the Relafen for three weeks. I called my doctor because the pain wasn’t getting any better and because I had developed a new problem – I was able to eat less and I was nauseous most of the time. After looking around online, I was convinced I had gastritis –- stomach lining inflammation.

At my second doctor’s visit, I was supposed to get another prednisone injection. When I told my doctor about my new symptoms, she decided against the injection. She thought I had an ulcer and didn’t want to make it worse by giving me another prednisone injection. She sent me to the hospital for an upper GI and I found out that I had gastritis. Six months later and 25+ pounds lighter –- I was in so much pain that I could eat very little — my stomach had finally healed.

During the healing process, I was sent to physical therapy for my hip. My first visit with the physical therapist made quite an impression on me. As the therapist was evaluating me, she noticed that my joints were extremely flexible. This was something I had always known. The interesting thing to me was the term she used: hypermobility. I kept the term in the back of my mind, thinking it might useful somehow. Several months later, my instincts turned out to be correct.

To be continued…

This entry was posted on Tuesday, February 3rd, 2009 at 9:13 am and is filed under Before Diagnosis - Signs, Symptoms, Etc., EDS Stuff. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.