My RSD Story

Some History


My Left Hand

 Since I can remember I have always been accident prone.  I was always hurting myself doing this or that.  A booboo here, and banged up knee there.  But some of the mishaps were a bit more serious.  I remember hurting my back when I was very young because I played the French horn and it was way too heavy for me to carry.  I remember riding my bike and getting hit really hard by a car.  The car took off leaving a huge bruise on my hip.  I was about 9 or so.  I was on public transportation, coming home from work, when the bus that I was on was hit by a car.  I was standing and holding on to a pole and at the time of impact I slammed my left wrist into one of the poles.  I was seventeen at the time and an aspiring court reporter.  My arm was never quite the same after that and I was unable to take stenography at the speed required for the Court so I became a legal secretary/paralegal after that.

            I slipped and fell on a wet ladies room floor at work.  I tried not to fall and I went skidding across the floor; wrenching my back and hurting my left arm when I broke my fall.

            In 1986 I was pregnant with my daughter when I fell down a flight of spiral steps at the law office I worked for.  The heel of my shoe caught on a piece of carpet and down I went.

            In 1991 I was broadsided by some drunk when I was pregnant with my son.  I was ok but my neck didn’t feel so good after that.

            In 1993 I was legally parked outside my daughter’s school, reading a book when I was rear ended by a careless driver.  My neck and head did a flip flop and I could actually feel my brain move.  What a concussion that was.  The violent vomiting was a dead give away.

            In 1994 I was rear ended again by some loser in a parking lot who wanted my parking spot.  It was then that the problems with my neck were becoming more and more painful.  The headaches began getting worse and worse over the years.

            Sometime in late 1995 I went to the family doc and showed her my hands.  She really didn’t think much about it and told me that sometimes that happens.  She did order some blood work and it was all normal.

            In early April, 1996 the law offices I was working for were moving to another building.  It was not only my job to oversee the move, but to pack my bosses office.  It is here where my story picks up.

The Discovery

            In the summer of 1996 I was living with my parents.  My second marriage had just ended in divorce.

            One day while cleaning the bathtub at my mom’s house, I couldn’t quite tell if the water in the tub was hot, or cold.  "Wow what a strange sensation", I thought.  As I hunched over cleaning the cleanser from the tub’s surface my eyes watched the steam rise from the obviously hot water.  But my hands, my hands could not feel the heat.  Totally immersed now in the hot steamy suds, I looked at my hands in disbelief as my eyes watched what my brain could just not comprehend.  There was nothing cold about it!

            "Ok, this is really strange", I thought.  Actually the thought was, "what the fuck!”

            Splashing the steaming water on my upper arm shook me with surprise for some reason.  The water was obviously hot.  It looked hot.  "Ouch" burst from my lips when the water hit my upper arm.  "Ok stupid don’t do that again."  But what the hell was going on?

            It had been a long few weeks of packing up the law office I worked for.  We were moving to another building and since I worked for the managing partner it was my job to pack his huge office full of stuff he didn’t trust anybody else to pack.  The thought occurred to me that maybe I hurt my arm doing all the packing, but my arm didn’t really hurt.  It actually felt sort of numb and tingling.  It felt like the pins and needles you get from sitting on you foot the wrong way.  But unlike that, this feeling didn’t go away. 

            Several days later, I woke up in serious pain.   I could not lift my arms above my chest.  My left arm was literally pinned to my side.  My left elbow was twice the size it was supposed to be.  But my hands; the palms of my hands were red and blotchy.  Not just a little red.  It looked like I was wearing a pair of gloves.  And the blotchy was white and red and BLUE!  My fingertips were BLUE!  And all of it; all of it stopped at my wrists.  It was like somebody drew a line there and colored all over my hands.

Diagnosis

            As I sat in the office of a Neurologist, my eyes swept the room.  The waiting room was large and full to capacity.  I knew I'd be awhile.  It was 11AM.  My stomach grumbled.  I was bored.

            The form in my hand was at least ten pages long.  Why are you here today was the number one question.  Wow, I wish I would have known then what a loaded question that was.  I would have left before seeing the doctor.  If only that could have changed what was to come.

            Dr. Mandell sat behind his oversized desk, with its oversized chair, which barely held his oversized body.  His desk, more like a conference room table, overflowed with files, papers, pens, books, and a variety of other office supplies.  It reminded me of a storage closet.

            I knew the exam would be painful.  My hands, arms, and fingers hurt in places that made no sense to me.  Nothing looked wrong.  Well nothing except that the palms of my hands were so red it appeared as though I was wearing a pair of red gloves, and then there was that arm that would not move.

            His voice broke the silence.   Let me take a look at you.  After the exam the look on the doctor’s face made me not want to know what he thought.  We have to do some tests I heard him say.

            I didn’t realize that there would be tests that day.  Oh boy was there tests that day.  The technician told me absolutely nothing; even as she attached glue to my scalp so the electrodes would stick.  “Just a test honey” is all she would say.  My head hurt.  It was well past 2 in the afternoon.

            Finally, at 4:15 I was able to see the doctor again.  That moment changed my life forever.

            Dr. Mandall studied the report in his chubby hands.  His fingers looked like little pork sausages ready to be skinned.  Tick tick tick went the clock on his desk.  I had the urge to toss it across the room.  The look of frustration on my face must have been one he had seen often.  Tick tick tick…

            “Did you bring somebody with you?”  “Umm no I came alone.”  “Well sweetie (Tick tick tick) you are a very sick little girl.” “Ohhh”, escaped my lips.  My head began to whirl. 

            “Ok”, I thought, Dr. Mandell is a Neurologist.  That means MS or something like that, Lupus came to mind too.  The boom of his voice shattered my thoughts.  “According to the tests you’ve taken today, I believe you have a serious and little understood illness call Reflex Sympathetic Dystrophy (RSD) and something else called Brachial Plexopathy among other things.”  Other things, as if what he just told me were not enough to absorb.  “What do you mean other things?”  “What the hell is RSD?”  “OMG am I gonna die?” “Well, the nerves in your arms/shoulders are severely damaged.  They are not communicating with your brain properly.  That is the Brachial Plexopathy.  We will need to perform more tests, MRI studies and EMGS to confirm the further diagnosis.  Your family doctor should send you for a complete blood study to rule out other things.  You need to see a pain specialist to confirm the RSD.  Here is a name of somebody I can refer you to in your area.  Here are the necessary prescriptions and some reading materials on RSD.  There is not much information available on this, but I had my secretary copy what I had from medical journals.  My nurse will take care of you from here.  I will see you in three weeks.  I’m sorry.”  “OMG he said I’m sorry.”  Doctors only say I’m sorry when it’s bad…really bad.  

            I walked into the office of the pain management specialist early one morning.  The room was already overflowing with patients.  Everybody in the office looked like I felt.  I guess I was in the right place.  I remember seeing the doctor walk by and thinking she looked like a high fashion model.  Standing six feet tall in her Jimmy Choo heels and tiny designer suit, her lab coat made her look like something out of an old, bad movie.  Then it got worse.  “Hi I’m doctor Lam.  So what do we have here?”  “I don’t know, you tell me.  Dr. Mandell says you’re the person to tell me if I do or don’t have RSD and more about it if I do.”  Then she said, “Ok take of your shirt and lie back. I’m going to inject you in your neck and we will see what happens.”  I jumped up off the table grabbed my shirt and stood against the wall.  She started laughing, and whipped out her prescription pad, wrote a script for Zanax and told me to make another appointment, have somebody drive me and take the medication an hour before I leave my house.  And then she was gone.

            Two weeks later with my left arm/armpit area so swollen I looked like I had a third breast I showed up for my new appointment.  I had taken my Zanax as instructed and my friend, Cherie drove me there.  The doctor/model confidently strode into the room and asked me if I was going to be a good girl now.  The pain in my arm was so intense I just nodded my head as the tears slipped down my face.  For a split second compassion shone on her face.  Then it was gone; leaving me wondering if it really existed within her, or if it was the Zanax that I had taken.

            I took off my shirt and lay back as instructed.  I felt a needle pierce the skin of my neck.  I thought she stuck me in the throat.  I later learned it was the corroded nerve.  Funny thing it didn’t really hurt.  The doctor said, “numbing.”  Then I felt something else and some pushing.   I felt this warm gush from my neck to my fingertips and I experienced the most incredible pain relief.  It was amazing; euphoric.  The needle was removed and a bandage replaced it, but I felt so good I started to drift off just a bit.

            Slap back to reality.  Dr. Lam was holding me by both shoulders.  “Honey, you have RSD.”  “Huh.”  “That was the test and the treatment for RSD.  Here is some information, here is a prescription for Vicodin and Zanax, see your neurologist, you can’t work anymore, see you in one month.  Make an appointment with the receptionist.  Good luck.”  That was in 1996.  More to come...

Please join us on Facebook if you need support