My RSD Nightmare

..... video below

My name is Carrie Deussing, I live in the suburbs of Philadelphia, PA.  I was a successful career woman who loved her job.  I had been married little over a year to my husband Arthur as we recently celebrated my 30th birthday in Aruba.  It all seemed like the perfect life, the perfect beginning to a strong marriage of a successful career couple.  We had high hopes and aimed even higher and the thoughts of starting a family were in the back of our minds.  Our cats, which we cherished dearly, were all the family we could handle for the high paced lives that we lived at the moment.  That is when it all came to a grueling halt.  July 20th 2007, a date I will never forget, the day when I experienced the 1st symptom/pain that lead to the diagnosis of full body RSD/CRPS.

I made it barely 5 days before the symptoms grew so intense before I needed to be hospitalized.  I had difficulty walking and feeling the extremities in the left side of my body.  My general practioner and GYN provider had been working me up for Kidney Stones.  It became apparent that it was something much more serious.  After countless tests and physician consultations, the doctors couldn’t give me a difintative diagnosis.  I was discharged 3 days later and told to follow up with a neurologist. 

During that hospital stay I was given the name of Dr. Philip Getson by a Nurse Practioner who recognized my symptoms and thought that they could be RSD/CRPS.  I knew that my mother had been diagnosed with RSD in a few of her extremities but really did not know that much about it.  My Mom had many other health conditions that caused her to be practically bedridden at the early age of 55. 

I contacted Dr. Getson’s office and was told to forward my records.  Once they were reviewed I would be contacted and set up with an appointment if appropriate.  The waiting period was about 6 months.  I thought to myself that if the symptoms continued, I would be dead in 6 months.  I told my husband about Dr. Getson and it turned out the he knew him on a personal level.  A phone call or two were made and I had an appointment within two weeks or so.  I thought my prayers were answered but I wasn’t completely satisfied because once I started to research RSD/CPRS I found out it was not a disease that allowed much optimism.  I was still following up with a neurologist to cover all avenues and a Rheumatologist to see if it were the Lupus acting up since I have Systemic Lupus but it had been in remission for four years or so prior to the symptoms starting.

The symptoms then spread to the right side of my body and landed me right back into the hospital less then a week later.  Same story all over again, more tests, more consults.  This time one of the consultations was from Dr. Getson since I was not able to make it to my scheduled appointment, he came to me at Virtua Hospital in Marlton, NJ.  He examined me and found that I was displaying symptoms of RSD on both sides of my body.  It was more predominate on my left side then the right.  My medications were adjusted accordingly and further tests were ordered to rule out other possibilities.  I went home a day or two later to follow up with him in his office.

Almost two weeks later my symptoms became so bad that my Neurologist told me to go to the emergency room again.  Along with all the other symptoms that I had been experiencing and that I dealt with on a daily basis my face and neck swelled up and became numb on the left side mainly.  This was also accompanied by headaches.  During this admission I had all the usual tests with a new addition of a spinal tap.  The spinal tap would show if there was a possibility that I could have Multiple Sclerosis, as there was a questionable lesion on my brain MRI.  I didn’t know what was worse.  MS or RSD?  No CURE for either, right?  They did the tap, I ended up needing a blood patch and went home.  My total length of stay for that visit was 7 days.

As most would do under these circumstances, I asked Dr. Getson for second opinion and he referred me to Dr. Robert Schwartzman, MD, Professor and Chairman of Drexel University College of Medicine, Department of Neurology for a confirmation of the diagnosis.  On September 17, 2007 Dr. Schwartzman told me that I was a candidate for the Germany treatment program.  I told him it was out of the question.  He then recommended a 5 day, in-patient Ketamine infusion.  Unfortunately, my insurer did not approve the treatment and I agreed to be put on the waiting list for the Ketamine Coma treatment in Germany.

The symptoms which I endured from day to day; I wouldn’t wish on my worst enemy.  I have my good days and bad days with the good days few and far in between. 

Currently, the good days have seemed to dissipate completely.  There is burning of the extremities and parts of my torso.  It feels as if someone is taking a blow torch to areas of my body.  I sometimes explain it as burning candle wax being poured down my skin.  The creepy burning hot feeling just seems to penetrate your skin like lava.  The complete opposite end of the spectrum is FREEZING COLD.  The feeling of frost bite or ice water running through your veins.  There were times over this past winter where I simply could not get warm no matter what I did, how many layers I wore, or how many gloves I put on.  The stinging I experience I describe as if I were being stung by a hundred bee’s at once, or as if an electric storm was going on inside my body.  Sometimes I feel as if I have an electric current running through me.

Temperature changes in my extremities are constant.  My left hand would be colder/warmer then the right and visa versa.  Color changes occurred often as well.  Both of the symptoms usually followed with swelling.  My skin is extremely sensitive to touch.  Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on one or more of my arms or legs can cause an extreme amount of pain.  Pain can also be increased by sharp/loud sounds and vibrations.  Being a passenger in a car can become very difficult and painful.

I sleep an average of 4 hours a night if I’m lucky.  The pain keeps me up at night and the medication does not help induce sleep or ease the symptoms enough to relax me.  Actually, I am in more pain if I lay down and keep still.  I try to keep my mind busy and distracted so I don’t think about the pain all day.  I do not spend my days in bed, although I sometime feel like I should.  When I lie still for long periods of time I develop dystonia.  The dystonia presents itself by, freezing up my muscles when I wake up.   I feel like I am paralyzed, but the muscles are just frozen and need to be worked out of that frozen state before I can have range of motion once again.  This is very painful and usually causes spasms.  Think of it like a full body “Charlie Horse”.

Life as I know it has completely ended.  I can no longer do the simple things on my own anymore.  I can not walk without the assistance of a crutch or wheelchair, and can not even wash my own hair.  I am not working, I can’t maintain friendships.  I feel as if I am putting stress on my family life and most importantly, I sense that my marriage might be in jeopardy.  Sometimes I feel like I’m losing my will to live. 

I looked into an alternative facility in Mexico.  The program follows the same clinical protocols that are used in the Germany trials and the program is managed by Dr. Anthony Kirkpatrick, MD PhD out of Tampa, FL.  Dr. Kirkpatrick works closely with Dr. Schwartzman here in Philadelphia and they coordinate care for many patients.  I was accepted into the program.

I know the risks, but I also know that it's my only chance of regaining a normal pain free life at 31 years old!

Carrie Deussing

Philadelphia, Pennsylvania USA

June 27, 2008