Musings of a Medical Zebra

A Zebra Speaks

Clues Continued

Physical therapy eventually helped me to become almost pain free in my left hip. I felt pretty good for several months — through the Spring or Summer of 2004.  My relief turned out to be short-lived.

Once Fall rolled around, my knees started to hurt. Since the pain was in both of my knees, my doctor decided to test me for rheumatoid arthritis. The test came back negative, and I was sent to physical therapy again.  The therapist diagnosed me with Iliotibial Band syndrome.  Therapy was beneficial, but I wasn’t anywhere near pain free at the time of my release.  I simply accepted that I was just going to have to live with knee pain. I relied on Ibuprofen a few times a day, several days out of the week.

Not long after my release from therapy, I experienced significant pain in my wrists and hands. It was late November and I decided to make some gingerbread cookies.  I didn’t have a stand mixer at the time, so I stirred the dough by hand. If you’ve ever made gingerbread cookies, you already know the dough is very thick. If you haven’t, well now you know.

Two days after stirring and rolling the dough,  my fingers hurt so much that I could barely bend them, and my wrists felt broken.  I knew the pain was caused by stirring the gingerbread. I could see having a little bit of soreness, but not the degree of pain I was experiencing. As the days passed, my pain improved. It never completely went away, though.

I decided against calling my doctor this time around.  I  did some research instead. I had a hunch that all my pain was related somehow. I did various google searches in attempt to find a name for my condition with no luck. A week  or two passed, and I thought back to what the physical therapist said — the hypermobility comment.  I put that term into google, along with joint pain, and it came up with a condition called “hypermoblity syndrome.” It sounded close, but didn’t explain everything. I wasn’t sure if that meant I had one condition, or two conditions — hypermobility syndrome and something else. I did more searching and managed to come across some articles about Ehlers-Danlos syndrome (EDS). The more I read about EDS, the more I identified with it.

It took at least a month to muster the courage to print off some info about EDS and approach my doctor with it. I was a little hesitant about suggesting the condition because I didn’t want my doctor to feel insulted. I know that some doctors don’t appreciate it when a patient brings in information about a condition they think they have.

After figuring out the best way to approach her, I made an appointment. The discussion went much better than I expected.  She made an appointment with a geneticist. A month or two later, I was offically diagnosed with EDS.

This entry was posted on Wednesday, February 4th, 2009 at 2:13 pm 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.

One Response to “Clues Continued”

  1. avatarandrea
    1:09 pm on February 7th, 2009


    I have a question regarding getting a diagnosis, and yes, I realise that you’re “just a patient”; I’m just asking for ideas. But I would appreciate your input on the question posted here.


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