Robyn's
Experiences with CRPS
Imagine if you will...
Someone is always poking you in the back of the knee. Poke poke poke. Sometimes with a
pen. Poke. Sometimes with
something sharper, a matting knife. Poke
poke. Sometimes with something harsh, a hammer, and the poking
becomes hitting, slamming, breaking.
That was August.
Your knee is on fire. Sometimes just enough to keep it uncomfortably
warm. Sometimes the fire comes from within the knee and it feels so
hot, it's going to explode. At times like that, you just wish that your
entire leg really was gone.
That happens at night sometimes.
All you're doing is sitting. Minding your own business. Then, all of a
sudden, without any warning, someone stabs you in the leg. The pain
runs down and up your leg, in tremors. Then, just as suddenly as it
started, it stops. But you don't know if it will happen again a few
minutes later, a few hours later, a few days later...
Luckily, that doesn't happen so much anymore.
The main symptom of CRPS is that one is always in pain. The pain can be
anywhere from low grade, annoying, stop doing that pain to all
consuming please make it stop can't think about anything else pain. And
all of that can happen in one day. For me, I usually have good days and
bad days, or within one day, I'll usually go up and down by just a few
points on my pain scale.
Within these pages, my intention is to post some pain updates for
friends and family, share information that I learn about CRPS because
there's very little that's understood about this disease (or syndrome
as it's called), and to tell my stories about dealing with CRPS.
I have Chronic Regional Pain Syndrome, Type I (CRPS), formerly known as
Reflex Sympathetic Dystrophy (RSD). CRPS is a progressive disease of
the autonomic nervous system that, in my case, affects the left knee
and surrounding area. Essentially, the nerves in my knee carry constant
pain signals to my brain, although there is nothing physically wrong
with my knee (I don’t have a sprain, torn ligament, etc.). Symptoms
include different types of pain (burning, jabbing, shooting, needling,
tingling, stabbing), swelling, color changes in the skin, and insomnia
(due to the effects on the nervous system and the pain involved). Also,
recently, short term memory loss has been added to the list, although
this could be a side effect of one of the medications that I'm on, or
sleep deprivation.
There is no known cure for CRPS. There is a course of medications that
one follows. I started with the usual anti-inflammatories, which did
not help. I moved on to an old-school anti-depressant, known as Elavil
or amitriptyline, which works on the nervous system. That was also
ineffective. I also had two sympathetic nerve blocks done, with no
success. I have discovered, through reading, that sympathetic nerve
blocks are no longer THE treatment
for CRPS, and anyone who says that they are is a fool, or, at least,
hasn't been reading last year's research.
There is no surgery for CRPS; indeed, having surgery may cause CRPS in
some patients. (Now there's irony for you, hey Alanis?) Physical
therapy can help, especially hot water therapy.
That's something I wished I knew from the beginning. I couldn't walk
from about January 2003 until April 2003, and even in May, walking was
unreliable. After Max and I bought a hot tub in June and I started
doing physical therapy exercises in it twice a day, I was walking
within 3 weeks. I conquered up stairs about a week after that, and
started going down the stairs, gingerly, on July 4, 2003.
I’m seeing a neurologist who specializes in neuropathic pain syndromes.
He says that yes, I will get better. However, it will take years,
because the nerves have to repair or reroute themselves. As an example,
if you sliced the nerves in the tip of your finger down to your first
knuckle, it would take about a year for the nerves to repair or reroute
themselves. We’re talking about the nerves from my knee to my brain.
Speaking of my neurologist, his name is Dr. Don Bivins and he is the BEST DOCTOR EVER! For reasons I'll
enumerate later, perhaps giving him his own page, I think
Dr. Bivins is excellent, and a true model of everything a doctor should
be. Especially when it comes to chronic pain, a doctor must be patient
and able to explain the disease, the medications, and what one can
expect. I give Dr. Bivins at least an A in all areas.
Updated: February 10, 2004