RAPP

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 Story

Kathy WP

4-4-2000 -- 

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:

Braintalk

Have a great day, KWP

 

 

 

 

 

 

 

 

 

 

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Rsd A Patient's Perspective
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Last modified: January 24, 2005