My EDS Timeline

This is the timeline of my life based on (what I can remember!) of injuries and pain that led to my diagnosis, as well as my continued journey with EDS.

• 1984 - Born with bilateral hip dysplasia; in braces for the first few months of my life.  My parents called me the "butterball" (I was a big baby!) and carried me around in what they called "the bucket."  Developmentally, I was behind due to the dysplasia and would roll over, crawl, and walk much later than my peers.

• 1985-2002 - An extremely clumsy kid (due to many reasons that we now know about!), my childhood and teenage years were a collection of dislocations, sprains, unexplained bruises, and frequent trips to the ER.  My parents used to say I had a "end of school year curse" - as each spring/summer I ended up in the ER year after year.

• 2002 - Started college.  I was studying Acting/Musical Theatre and was dancing, working out, and on my feet a lot.  I discover I REALLY hate standing for more than 10/15 minutes at a time.

• 2003 - My knee subluxes during ballet class and I fall at barre.  I am suddenly infamous in my program.

• 2004 - Back spasms repeatedly send me to the floor and make sitting in classes, not to mention dancing or being onstage, difficult.  In addition, my left hip begins to ache.  Go to see the doctor, who suggests that the size of my breasts are the issue.  I was 5'4" and wore a 34E.

• 2005 - Had breast reduction surgery.  Back spasms faded away, but the aching in my hip was becoming more prominent and a dull ache was starting on the right side as well.

• 2007 - Move to Chicago and promptly sprain my ankle (twice) on potholes over the course of the year.  Go to see a doctor about the hip pain, but am told to take ibuprofen and stretch more before dancing.

• 2008 - My knee dislocates in the middle of a performance while I am onstage in front of a live audience... by myself.  The show has to be stopped and someone called 911.  I'm taken to the ER and the doctor tells me that there is no way that I dislocated my knee just by walking; it takes a lot of force to dislocate a knee.  Xrays show nothing and I'm sent home with a brace and crutches.  I walked on the crutches for 3 weeks and then switched to a cane (which my boyfriend and I called "McCane" due to the timing with the 2008 presidential election) for 3 more weeks.  This is also the year where I was officially diagnosed with ADHD; something I'd been struggling with my entire life.

• 2009 - Hip pain is starting to become unbearable and I finally see a doctor who actually listens to me.  She sends me to her hip specialist, who declares I have a labral tear.  I have a hip arthroscopy, which he calls a success and I'm sent home to start physical therapy.

• 2010 - I go through NINE MONTHS of physical therapy that do nothing to aid in my hip pain and actually seems to make it worse.

• May 2010 - I develop an allergy to NSAIDs due to the insane amounts of ibuprofen I was taking to get through the pain.

• May thru September 2010 - I am losing weight rapidly (without trying) and bloodwork shows that my thyroid is hyperactive.  An ultrasound and CT show that I have a tumor in my thyroid which is removed (benign, yay!).  The inactivity doesn't help my hip pain, and winter is the devil in Chicago.

• January 2011 - I GOT MARRIED.  Yay!  Not really to due with my pain, though both my husband and I notice that I am in much less pain when we're on our honeymoon in Belize.

• March thru June 2011 - My left wrist starts to bother me, followed shortly by my left shoulder.  When my hands join the "ow" party, I see my doctor in sheer frustration.  She takes blood tests which come out negative for lupus (IT'S NEVER LUPUS, according to Dr. House!).  I don't show any classic signs of fibromyalgia, my xrays and mri show no arthritis deterioration.  I (and my doctor) are literally at the end of the line when she refers me to a rheumatologist.

• July 2011 - My rheumatologist says the words that will change my life: Ehlers-Danlos Syndrome.  I start doing insane research as well as contacting my family.  My sister, a nurse, realizes she shares many of the same symptoms, as do her two daughters.  My aunt then confirms that she had a biopsy done and the diagnosis was confirmed.  My rheumatologist starts me on a pain medication regimen which doesn't do much more than take the edge off the pain.

• August 2011 thru May 2012 - I am a terrible patient.  Nothing my doctors have said or done (except give me an answer) helps.  PT only made things worse, and every joint in my body starts to betray me.  Vertebrae in my back won't even stay in place.  I avoid my doctors despite them wanting more blood work and for me to get an echocardiogram to check for any evidence of a mitral valve prolapse.  I walk with a cane much of the time, have to change my hours at work due to my inability to get out of bed in the morning, and truly believe I am falling apart.

• June thru August 2012 - The pain finally gets too much to bear and I decide that avoiding doctors is definitely not helping either.  Finally get my echo done and we find no evidence of a prolapse, though I have to have it done yearly now.  Also have an ultrasound on my hand and wrist to see if I have developed arthritis or carpal tunnel (both negative).  Due to the amount of medications that I'm on, prescribed by 3 different doctors, my rheumatologist and primary care docs are at a loss as to how to manage my pain.  They tell me to start swimming, which I say is like telling someone with a broken ankle to run a marathon.

• September 2012 - I am referred to the Rehab Institute of Chicago's Center for Pain Management.  I have a 3 hour consultation with 2 doctors, 2 nurses, and a pain psychologist.  They prescribe me sleep medication and give me their recommendation for how to proceed: they want me to start rehab... and the sooner, the better.

• November 2012 - I am going to start rehab and have NO IDEA what to expect.