After Diagnosis


(This is a continuing series of posts on my journey with chronic pain & RSD)

Since RSD is not common and most people have not heard of it before here’s a definition:

From Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.

What came after the diagnosis I will only touch on in brief.  I am more interested in going into detail about how I’ve been able to use my mindfulness practice to grow and heal in relationship to my disease and physical pain.  I see no real benefit to anyone in my going over at length all of the bad days and challenges I underwent those first few years after my injury.  I think it’s easy to think that sharing these moments provides some relief but I think more often than not it simply perpetuates suffering and keeps us stuck in the cycle of pessimism and complaining.

In the months and years that followed my diagnosis my health went up and down from day to day.  There was a period of time that I was able to work and I managed my symptoms relatively well.  In 2007 I began walking with a cane and a few months later I stopped working full time.  In 2009 I flew to Philadelphia with my husband and took part in a two-week out patient ketamine treatment with an RSD specialist.  By this point the RSD had spread to both feet, legs, and recently into both hands.  The ketamine treatment greatly helped my hands but had no affect on my lower limbs.  In 2010 I was accepted on disability (which meant I finally had insurance!) and then went through a spinal cord stimulator surgical trial, from which I had no improvement.

Over the years I’ve also tried pharmaceutical medication, physical therapy, herbal supplements, counseling, acupuncture, diet restrictions, body work, and naturopathic interventions to varying degrees and amounts of time.  I found the blend of western medicine with holistic modalities to offer the most comprehensive approach.  Chronic pain management involves a lot of trial and error and takes time to hone in.  Everyone is a little different and even in the same individual what works one day might not work the next.  Pain management is more of an art than a science (which makes it very difficult for doctors and very frustrating for patients).

Throughout this time it was very important to continue along the path I had started before I was diagnosed of being my own doctor.  Especially since I was a younger person dealing with an uncommon illness.  In my experience it was easy for docs to think I was simply vying for pain medication (which unfortunately they have to be skeptical of due to the amount of folks doing just that).  It was also common for me to know much more about RSD than the doctors I was seeing simply due to the large amount of time I had spent researching it online and how little is known about RSD in general.  Before he met me my neurologist hadn’t even heard of the use of ketamine in the treatment of RSD.  So I was having to advocate for myself, educate my doctors, and find my own course of treatment all while dealing with my illness, which often proved quite challenging.  At times I was very disheartened and ran out of steam to be my own doctor (I much rather would’ve preferred to have had an actual doctor in charge of things) – but eventually I would pick myself back up and forge ahead.

It took me a long while to realize this but the most difficult thing about having RSD was not the personal research, physical pain, limitations, sleeplessness, exhaustion, medications, doctors, or attempted treatment protocols.  The most difficult aspects of the whole ordeal were the things I told myself.  Thing like: “This sucks!  I hate this!” and “Life is not supposed to be like THIS!” and “I’m going to be in pain forever, this will never change!”  It was my mind, not my body, causing the real havoc.  Sure I had physical limitations but they didn’t even come close to comparing with the limitations I was mentally putting on myself.  This was, and remains to be, one of the most important insights  I’ve ever had.

In order to start healing I had to stop fighting.  I had to learn to let go of the life I thought I was going to have and embrace the life in front of me.  I had to stop looking at my body as though it were against me and we were enemies, somehow separate.  At first I was under the impression that stopping the fight (aka accepting) meant giving up entirely.  If I accepted the RSD wouldn’t that mean I’d become complacent and hopeless?  With the help of my mindfulness practice I came to understand how they are not the same thing.  Acceptance actually meant letting go of the struggle, the mental strain.  Acceptance meant letting go of the anger, fear, and worry (which, I might add, only help to fuel pain levels).  Acceptance made room for moving forward and for healing.

Over time I learned how to stop fighting and start accepting that I had RSD.  And over time this became the very most fruitful practice in my pain management tool belt.  One I continue to cultivate most everyday.

There is a difference between acceptance and giving up.  It’s the difference between the mind being able to let go of an old idea in order to embrace a new one verses becoming a victim of our own misunderstandings about life.


2 thoughts on “After Diagnosis

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