31 December 2009

My story up to diagnosis

   I have always known that I am double jointed.  As a child, it was kinda fun.  I could turn my elbows nearly all the way around and it grossed everyone out.  It was awesome.  My fingers bent backwards and I could put my foot behind my head.
  In high school I sprained my ankle and it hurt, but did not resemble a normal sprain.  Once I joined the army and had to do physical fitness tests, I really started having problems.   In basic training, I hurt my shoulder...the army told me that is was just a pulled muscle.  At advanced training, I dislocated my knee running, but by the time the Drill Sargent got to me it was back in place and I was told it was just a sprain.  The longer I was in the more problems I had.  I ended up in a knee brace to do any exercises.  I had aches and pains in all my joints as time when on.  Towards the end of my enlistment I had significant back pain.  The army eventually put me out stating I had a dysfunctional SI joint.  After the army I started having significant pain in my elbows and ended up in a brace to keep me from bending them while I slept.  I continued to have serious back pain.  Several years ago I fell off a step outside and sprained my ankle.  I had x-rays and was told it was nothing really, there was no lasting damage.  This summer I fell while carrying a bed and hurt my knee.  I felt that I had really hurt it, but no one could tell me if there was anything wrong with it.  Finally they just decided that my knee cap was loose.  Then several months ago I started having significant pain in my hands and feet.  I also had strange growths on my head...told they were just cysts (I have them on my feet too).
  So, I use the VA healthcare system because I did get disability from then for what they decided was a dysfunctional SI joint. I have been complaining about these issues with them for a long time.  At first, I was just told that it was in my head.  Then one of the docs just put me on pain killers and that was the end.  I requested another provider.  My new provider is good and listens.  Too bad we had to go through so many things to get to my final diagnosis.  First, I had all the testing for MS...then it was Fibromyalia.  Waiting for all the results seemed to take forever.  In November I went to see my counselor and told him about my pains.  He said it could be Rumetoid Arthritis.  I went to my provider to ask about it.  She sent me for lots of blood work and then gave me a consult to the Arthritis clinic.  I finally went to see them yesterday.  I met Dr. Rose and she was great.  She looked at all my blood work and my family history before I even saw her, which is more than I can say for most in the VA healthcare system.  She asked me some questions about hyperflexiblity and skin elasticity.  She was surprised that every joint in my body was able to hyperextend.  She also looked at my skin and pulled on it.....I thought it was normal for it to stretch so far.  Not so, it is rare for that to happen.  Dr. Rose also asked about bruising.  I never really thought about it, but I do bruise easily. She diagnosed me with Ehlers-Danlos Syndrome.
   Ehlers-Danlos Syndrome is a rare genetic disorder that effects the collagen production in your skin and joints.  This makes the joints tremendously loose and vulnerable.  It also produces cysts on various parts of your body.  So, it turns out that I am not just whining about having pain.  There is a legitimate reason for me having all of these pains.   This diagnosis also explains all the accidents I have had and issues I had.  All the sprains were most likely dislocations that righted themselves before anyone else could see them.   The cysts I have on my head and feet are a direct result of this syndrome.
  It is awesome to finally have a diagnosis and know that I am not just nuts.  However, I am not thrilled that it is a genetic disorder that cannot be cured.  I will always have the pain that I already have.  It will most likely get worse as I age.  I am already on pain meds to keep the serious pain at bay during the day.  I also take a sleeping pill to try to keep me from feeling every pain in my joints before I finally fall asleep.  I have been told that with the number of dislocation I have already had there will most likely be more.  Fortunately, the dislocations usually right themselves or I move it back into place easily.  Unfortunately, I may end up in braces to keep the most vulnerable joints in place.  Eventually I may even end up in a wheel chair because my knees and ankles might not be able to support my weight (which is not all that much).  Surgery might be an option in the future to shorten the stretched out ligaments.
  I am extremely scared about what the future will hold.  I have two small children, who I absolutely adore.  I am afraid that I may not be able to play with them the way I want to play.  I can bruise easily and worry about dislocation.  Guess I will have to find better ways to play with them.  I may be the inside Mommy and Daddy will have to do all the rough and tumble boy things with them.  We are planning on moving this summer.  This will seriously limit the houses that we will be able to move into.  Steps are something that might not be manageable with age.  So many things to think about now.
  I have never known anyone with this syndrome, so right now I am feeling a bit alone in this.  My family is being great.  My husband is super supportive and willing to help me with all I need.  The kids know that Mommy is very fragile and they have to be careful around me.   Having said that, it would be nice to connect with some others who are living with this and get some suggestions on dealing with it all.

Pain level today:  4 - mostly in my fingers and toes ( little in my back).

For more information on EDS click here