Rsd A Patient's Perspective: My goal is to identify RSD and teach others about what it is and what it does. Education is the best weapon.
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My RSD StoryKathy WP4-4-2000 -- Passive Journey I
stepped out on the front porch, the sun shines on the steps and I sit down. I
feel the early morning sunshine on my skin. It is a soothing day, and it
wouldn’t be wasted by idle time. I still have my jogging pants on. They’d be
okay; I’m just going to make drawer fronts for my kitchen cabinets. I sort out
some oak boards. Doug had logged and sawed the lumber I used. It is rough-hewn
so we bought a joiner machine to smooth the lumber’s face.
The machine has two knives turning at 3600 rounds per minute. Firing up
the joiner startles me. I position and hold the board down and smooth the edges
first. The shavings are flying. Gently falling. My arms shake, I push the board
and it’s hard to hold. ROAR! SCRAPES! LOUD! Then--quiet.
A splinter had jumped into my hand. They always want in on the action.
The bloodsucker! I pull it out, snap it, toss it away. The face of the board is
really rough. I better take my time with it. It is going pretty good though.
Wait a second, darn it’s stuck. I punch the kill switch with the side of my
right hand and pull the board out with my left.... WAIT! The
sound is like something I have never heard before. A crunching sound. A very
loud crunching sound. I am afraid to look. I know I have to. So, I take a quick
glance. Turning away I have thoughts running through my mind at the speed of
sound. But I am thinking about nothing in particular. The kitchen. Cleaned. No.
That is not it. The boards are rough. I know that. They have to be planed.
I’ll use the joiner. The joiner. Oh yes. Joiner.... My hand feels funny. Odd.
Like it’s never felt before. Hmm. I look. Oh my goodness! My fingertips
are----mangled. Thick blood oozes from where my nails used to be. I feel sick.
This is not right. I need to do something. What? I look at my fingers again. My
little finger is not bleeding. Not my thumb either. My pointing finger has its
tip, but it is bleeding. I start to touch my fingers. Suddenly. I jerk back. NO!
Do not touch! I am screaming. I can’t hear my voice. Why can’t I hear my
voice? I look around did anyone see that? I can hear my scream. But I cannot
hear my scream. Why? The sun still warms my skin. I look and see that I am
wearing my moccasins. What a day. It should not be wasted. I feel the urge to
pace. I take a few steps. Turn. Take a few steps more. Turn. Now. I know I have
to do something. What was it? Ummm. The clouds lift from my brain. I opened the front door. “Ann!” I said in quiet frenzy. Did she hear me? “Ann!” My
daughter Ann is 14, and her cousins Tiffany Gabbard, 13 and Kim Poynter, 15 were
with her. They were in Ann’s room down the hall. I hear footsteps running. “What? Mom? What’s wrong,” Ann said. Tiff and Kim run up
behind her. All three girls’ eyes were large. I think I scared them with the
tone of my voice. “Call Lois, mom or mamaw.” “Why?” She asked me. “I cut my fingers off. Hurry,” I said. I did not want to upset
her. I looked down and saw drops of blood falling from my fingers to the hallway
and kitchen floor as I pace. They were about the size of a half-pint jar lid.
Large drops of blood. “Let me see,” one of the girls said. “No,” I said. “Just call.” I go to the bathroom and get a towel. I take it in the kitchen and
throw it on top of the blood drops. I move it around with my foot, making sure I
get them all. I cannot bear the thought of Doug or the boys coming in and seeing
big splotches of dried blood all over the floor. At least I am not bleeding
heavily. “What are you doing?” The girls asked. “I don’t want Doug to see the blood.” I make sure to clean up
the blood in the hallway too. I start feeling kind of sick like. My ears hear odd faraway sounds. Sounds as if in a barrel. I walked
outside and paced in the driveway. If I don’t, I know I will pass out. I am
not going to allow that. I heard one of the girls say that Lois is on her way.
Sounds around me are amplified. Rocks crunched under my feet. The
interstate roared in the distance. I noticed I am pretty sloppy: t-shirt,
jogging pants, socks, moccasins. Didn’t care right then though. The girls
watched me from the front porch. I don’t know if they talked to me. I didn’t
hear any voices. Just my own. In my head. My messed up head. Lois veered down
the driveway. I got in the car and she tore out of there. “What happened?” She asked. “I cut my finger(tips) off.” I told her. I don’t know if I
said fingers or fingertips. I was not communicating very clearly. At least I do
not think I was. My fingers felt numb. Blood oozed. I looked at my fingers. They
looked like fingers until the fingertips. A mass of tangled nails skin, tissue.
My heart pounded. “I’m hurrying!” Lois said. “I know.” I started making grunting, groaning noises. I do not
know why I did that. I cannot stop
it. Half way to the hospital a searing pain shot to my fingers. Pain worse than
childbirth. I wanted to scream. But that would panic Lois, and maybe even me.
The pain felt the way searing meat sounds. Tears rolled down my face, but I will
not cry. No. I will not. I had that amount of control over the situation. I was
not about to let it go. I walked into the er on my own accord. The staff was busy and I pulled a chair from one of the
sign-in tables and sat down. A nurse I knew said my name. I turned to speak
to her and she saw my hand. She called for some assistance from the other
nurses and I got fuzzy headed. Time lost its dimensions. I felt pain and I grunted out of control.
I tried to stop but it is not a controllable situation. People buzzed in and out
of my vision. Nurses applied iv’s and after a few seconds relief from the pain
swept through my foggy head. I heard them talking and they said they’re
sending me to Lexington (fifty miles away). They said that the docs there were
better at plastic surgery. I saw them look at me and realized they were talking
at me. I think I understood their words. Faces were there, not there, then gone.
I remember a trip in an ambulance. I remember waiting in a hallway. I woke up at
home. My bedroom was dark and the tv was on. I heard talking in other rooms. I
felt very sore in my hand. I saw the bandage and felt the throbs. It was not a
dream. It happened. It happened. I worked with my hand gingerly at first. I am a person who used her
hands a lot. A whole big lot. My fingertips were sore ands the stitches in the
tips were healing fast enough. After a week I returned to the plastic surgery
unit at the University of Kentucky Albert B. Chandler Medical Center’s
Kentucky Clinic. The docs told me I was healing good and I’m right where I
should be considering what my hand had been through. About a week later the
stitches were removed. I was still having pain. The doc gave me another
prescription for percocet (a strong pain killer). He told me the pain should be
getting better. I told him I understood. But, I didn’t really; I didn’t
understand why the pain was changing from an ache to a harsh burning pain. The
pain felt like I had touched a hot motorcycle muffler with my fingertips. I
didn’t tell the doctor about the change in the pain. The third week I told the
doc what I was feeling. He cautioned me about the chance of drug addiction and
sent me to a physical therapist (also called pt). At that particular point I was feeling dejected and confused. I felt
the pain. I did not want an addiction on top of what I was dealing with. The
pain was still there and the burning was getting intense. I went to the physical
therapist and we set up an exercise plan for my hand and fingers. I was told
physical therapy would desensitize the mangled nerve endings and that would help
the pain to fade. I set up a plan. I exercised the fingers five times a day. I
dipped my hand into melted paraffin wax and wrapped a towel around my hand for
20 minutes before I started the exercises. The warmth helped at first. The main
problem with physical therapy was the desensitization. I did what I must. Even
when inside my head I screamed. I trudged on. I told the therapist about the
pain and she said she thought that I could beat it with exercise and
determination. I kept my hand warm, did all of the exercises, I did everything I
was told to do and the pain was still aggressive. I saw the plastic surgeon
again and he suggested that I see a pain management doctor. I had even stronger
feelings of dejection and frustration. I didn’t believe I was addicted to
painkillers. I knew I hurt. For three months I hurt. I went back to college in
February of 1995. I attended Eastern Kentucky University. I was a junior
journalism and English major. I had trouble with concentration and pain. I
thought school would be the ticket to keeping my mind off of the pain I had. It
didn’t work out that way. In March I was scheduled to see the pain management
doctor at the Kentucky Clinic. I was lucky. Immediately the docs there knew what
I was facing: RSD. I first heard the initials rsd then. The journey of rsd began. I met with the physical therapist at the
clinic and she explained that rsd was a monster. A monster that had to be
treated hard and treated fast. My mind whirled with jargon I didn’t know and
people came and went out of the room I was in. They wanted to see my hand and
fingers. I was the earliest rsd case they had ever had. I was told about
epidurals and sympathetic blocks and aggressive pt therapies. I was scared out
of my wits. I was completely ignorant of the terminology and what the future
held. Later that day I drove and cried all of the fifty miles to home. My husband was doing some excavation work on a farm and I drove to tell him about the diagnosis. He reassured me and we decided to get another opinion. We felt there was no point in rushing into medical procedures we didn’t understand. I began my research then. I went to my public library and the library at Eastern to get literature about rsd. I placed all of my efforts into getting rid of rsd. Unfortunately school had to be put on hold. There was much to be done and I didn’t want my education to suffer because of rsd. So I reluctantly withdrew from the university. It seemed odd I had to step away from my education to garner an education. An education about rsd. Rsd is also known as CRPS or chronic regional pain syndrome. My hand has constant burning pain. When my rsd flares it causes pain that is highly sensitive and a simple touch or breeze increases the pain. Then my hand gets cold and stays cold. I am constantly warming my hand because it doesn’t seem to be able to warm itself. RSD also causes swelling and changes in the color of my hand. I have also been unable to sleep, and have had emotional upheavals, depression, irritability and agitation. I have a patient family, but they are affected by rsd too. They see what it does to me and how I treat them. I try to keep my tension from them, but I can’t fight it every second and there have been times when I have been irritable to them. I try extra hard to protect them. I do not want them to worry. Rsd affects us all. I am sure there is a
better definition to the description of rsd out there in cyberspace. I am not a
medical professional, but I have read lots of articles about rsd. Education to
oneself is another way to defeat the ghosts of fear about the unknown. Although
it has been recognized since the civil war, no one really knows why it happens. I don’t know why it happened with me. I am learning that it is a
condition that I must control as best as I can. Rsd worsens when the weather
gets cold or I am using my hand less. It has a vicious cycle. Non-movement means
rsd gets aggressive. I was scared of the aggressive manner that the docs at the
Kentucky clinic had. I went to my family doctor to discuss rsd. She told me that
if I were uncomfortable with the Ky clinic docs she would send me to another
doctor. I could get another opinion to see if the route the clinic docs
suggested was indeed the best way to go. (I’ll call him Dr. Y.) He suggested
that I begin the battle with medication first. He prescribed and I took four
different kinds of meds then, Zoloft Ultram, Elavil and Baclofen. Each had side
effects and annoyances. I couldn’t tell any difference in the pain level I
had. I took the meds religiously and did my pt. I wanted to best this monster.
But there was no change. Dr. Y
later prescribed vicodin. He told me to take no more than 8 pills a week. I did
just that. But, the pain kept creeping back. More and More. Dr.
Y then suggested I try a sympathetic block. It was a procedure where the doctor
used a machine to x-ray my neck to locate the precise spot to inject an
anesthetic. He told me what I should expect. Although it was probably just me, I
didn’t expect what happened. On the day I was scheduled for the block I went
into the hospital and registered. The receptionist gave me some papers to fill
out. One of the forms scared the hell out of me. It described forty-eleven
things that could go wrong. I studied the document and then I signed it and gave
them permission to treat me. I went to a small room and was given a hospital
gown. I changed. A nurse came in and led me to a room where a large machine
hovered over the bed. It had a big light attached to it. I saw sterile white
walls and various other hospital looking stuff. I got on the bed. A nurse walked
over to the counter and picked up a tray of needles and bandaid supplies. She
came to the bed and reached for my arm. She tied a piece of rubber around my arm
just above my elbow. After a moment or so Dr. Y came in and had me lie back on two
pillows. The nurse injected vercet (a mild sedative) into my veins. Dr. Y
stuffed the pillows under my back and pushed my head down and felt around my
neck. He focused the xray machine and located the place where he needed to place
the injection. He told me that I would feel some discomfort. (iiieeeee! I hated
it when they said discomfort!) He was right to say the very least. I felt the needle enter my skin and as the doctor applied pressure I
felt and heard a pop. “There,” Dr. Y said. I felt very uncomfortable and my
neck hurt. The injection started burning and Dr. Y told me to hang in there
because he was almost finished. I had so many things running through my head. I
thought that I would never place myself in this position again. I hated lying
there. I hated the doctor, the nurse, the radiologist, and myself. Mostly I
hated the rsd. I HATED rsd. After what was in reality 15 minutes the Dr. Y finished the
procedure and left the room. The nurse instructed me to sit in a recliner and to
try and drink some coke. My throat felt funny, I started losing my voice and my
left eye began to droop. All normal I was told. After about 30 minutes I was
released and I returned home. I was tired and scared. I couldn’t eat or drink
very well. I did seem to get a little relief, but it was very little and lasted
less than two weeks. When I saw the Dr. Y again he said we should do it all over
again. I needed pain relief. So, reluctantly, I agreed to more injections. Now, let me say that I liked Dr. Y. He was charming, personable, and
supposedly supportive. His nurses were strictly professional and his staff was
friendly. I can’t help but think that my rsd was a challenge to Dr. Y. Without
being too bitter; I believe that I was seen as an opportunity for prestige. Dr.
Y wanted to cure rsd. He believed in his research. I was the subject. My pain
was a possible door opener. He turned out to be an opportunist. I have to think
he was deep down trying to help me. However, I feel he was only interested in
the blocks. I hated each and every one of the procedures I went through. I hated
them all! There were several. There were procedures that were different. The
placement of my body and injection sight was in another area of my body, but
they were basically the same as the one I described earlier. None of them did me any good. None. I tried to explain that to Dr.
Y. And yet I felt as if what I was saying wasn’t heard. Along with the
physical pain went emotional pain; if Dr. Y wanted to do a procedure and I did
not, his demeanor turned into something less than professional, to say the
least. I decided I could not allow Dr. Y’s attitude to destroy the work I had
done. I went to see my family doctor and get her opinion on the way Dr. Y was
behaving. She suggested that I go back to the Kentucky Clinic and be
re-evaluated. I agreed with her. Dr. Y was not interested in my feelings. My
emotional feelings. Not all doctors are like him. But in my experience he was
exactly as I have described. Out for the glory of being the curer of rsd. But he
let one important aspect of being a true healer escape him: the patients’
voice. He was the doctor. THE doctor. I was just a patient; what
did I know about how I was feeling? So,
I ended up at the beginning again. Square one. Again. Start-over time. I went
back to Kentucky Clinic the docs there started me on medication alone. But as
time went on the rsd wasn’t being managed. Or rather, the pain wasn’t being
managed. Another bout of blocks was initiated and they offered little relief. My
medication was changed too. On one visit a doctor at the clinic wanted to try a
sinus block. I agreed hoping for pain relief. It felt different from the other
blocks. He used two long q-tip like sticks. On the end of each he had placed a
topical anesthetic. He then inserted them into my nostrils and positioned them
so that they would touch the back of my throat. My
gag reflex felt numb and the medication left a bad taste in my mouth. After
about ten minutes he removed the sticks and asked if I felt any better. Pain
wise that is. I couldn’t tell because my stomach was lurching and I felt sick.
He told me he was finished and that I was free to go. I felt unsteady and when I
left the treatment room I went straight to the ladies restroom. I splashed cold
water on my face and tried to feel better. My temples started throbbing and I
felt even sicker. I walked out of the bathroom and over to the checkout counter.
I wanted out of that place. I was there for a minute or two and a nurse came out
to take back another patient. She looked at me and asked if I was okay. I
couldn’t speak and felt my knees buckling. She grabbed under my arm and called
for a wheel chair and some help. I was wheeled back to the room I had just left
and the doctor and other nurses came in and went to work on me. My blood
pressure had gone through the roof and was causing me to be sick. I was given
some medication and about an hour later I felt well enough to leave. As I left
the building I promised myself that I would never again allow something to be
done to my body that I was not absolutely sure about. NOTHING! Driving
home that day I finally came to the realization that rsd might be with me for a
long time. I started making an effort to accept that the change I had endured. I
could not paste my fingertips back on, and no matter how hard I tried, when I
look at my left hand it will not look normal. Normal used to be what my right
hand looked like. Now, normal is that my left hand and fingers are different.
Very different. I worked for weeks
to accept the pain. Eventually, since I was not taking any more procedures, my
family doctor took over the prescribing of my medications. That is where I am
today. I take my meds and accept that my life is normal again. I still hurt and
there have been a few times when the needle looked mighty tempting. Now I face
rsd everyday. It no longer controls my emotions and I am no longer depressed.
If you read my story this far, thank you so much. If you have any questions or just want to
make a comment please drop a line to let me know at kwp75@adelphia.net. God bless and may your day
be less of pain and more of joy.
01/26/2005
I am still doing well. I am finding much information online now and there is a great forum for folks called Braintalk. It is a place where people suffering from several different ailments can find support, new meds or treatment info and friendship. It is a great place to find people who understand what you are facing, too. Click on this link:
Have a great day, KWP
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