Case Study 2

Case Study: RSD
May 24,2004 How Nuerofeedback has Affected My Life with RSD

By D. F.
In March of 2003 I ran into the basketball goalpost in our driveway with our scooter. I wasn’t going fast and it was more embarrassing than painful. I whacked the post with my left shoulder and the rearview mirror. At the time we were more concerned about the mirror than my shoulder. There wasn’t even a bruise.

As the weeks passed the aching shoulder progressed into an aching arm and hand. Then the ache turned into a dull throb. I couldn’t stand to sleep on my left side or have someone squeeze my shoulder. I gritted my teeth just to hold the blow-dryer to dry my hair in the morning. I was going thru Tylenol like they were cough drops.

I finally went to my family doctor who diagnosed me with carpel tunnel. I wore a wrist brace and took vioxx for one week and my hand started turning blue and the pain took on a whole new level. I returned to my family doctor, who increased the vioxx and set up an appointment with a neck/shoulder specialist since he felt I would need carpel tunnel surgery.

By the time I saw the specialist the next week my shoulder was noticeably raised and the arm was swollen. I couldn’t stand to rest my hand on the steering wheel to drive, the vibration was too painful. Besides even if I could bear the pain I didn’t have any strength. But my right hand had mercifully been taking over and even simple, mindless things, like reaching to open the door or feeding me, I now found my right hand was doing. I didn’t have the strength in my left hand to twist open the gas tank lid!

The shoulder specialist took one look at me with my lopsided shoulder and sent me for a neck x-ray. The x-ray indicated a disc problem in the C-4 and C-5 discs. He said he didn’t think it was carpel tunnel but he suspected it was a ruptured disc. He scheduled an EMG for the following week and cat-scan that week. In the meantime he put me in a soft collar and said not to wear the wrist brace. I asked him about the pain and he said the collar should relieve the pain.

By day 3 in the collar the whole arm is blue and I am in such pain I literally cry when wind blows on my arm. I am not exaggerating here. It feels like little sharp shocks are being sent thru my arm every time a breeze blows across my skin. At the same time if I move my arm the slightest my bone throbs; like a deep twisting pressure. I just don’t want to move my arm to avoid that pain. I don’t want to move it and I don’t want anything to move around it. Can I have a vacuum sealed bubble built around it please? This is Hell.

I’ve called the Shoulder doc three times over the last two days and Nurse Hatchet (“the bitch” as I have come to affectionately refers to her) once again tells me that he will not prescribe anything for pain until all the test results are in. Tiredly she continues with her monologue that if I am in that much pain then I should go to the ER or come into the Pain Clinic there at the Orthopedic Center

I had just hung up the phone from Nurse Uncaring and walked into the hall when a co-worker bumped into me. I crumpled like a deck of cards. I called my husband and he went with me to the Pain Clinic at the Orthopedic Center For the first time, a doctor was really interested in my pain! Who’d thunk it. Mental note to self: when in pain go to Pain Clinic.

I actually had two doctors examining me but they didn’t seem the least bit interested in my shoulder. They had seen the results of the cat-scan and I had arthritis but no ruptured disc. They were putting stick-on thermometers on both my hands. Next they were measuring my arms and having me raise my arms and having me gripe their hands with my hands. I had tears rolling down my cheeks, enough with this torture. Leave my arm alone. Then the heater kicked on and I was sitting under the vent. As the air shot down on me I got chill bumps. But only on my left arm! If I had been thinking straight the significance of what had just happened would have hit me. But all I could focus on was the pain.

For the first time I heard the word RSD. But it just floated over me. Because for the first time a doctor actually gave me a pain shot. They also gave me prescriptions for vicodin, cortisone, and amtriptyline. They explained that the temperature of my left arm was 4 degrees lower than my right arm. They said not to wear the collar that I needed to keep moving the arm and they put me on sick leave until the EMG was performed the following week to confirm the diagnosis.

When I met my husband in the waiting room and he saw me without the collar I explained it wasn’t my neck after all. He asked what was it then and I laughed and said I didn’t know but finally someone was putting me out of my misery. He shook his head, Good God, first its carpel tunnel, then it’s a ruptured disk and now you just don’t know.

The following week a different doctor did the EMG. The most painful procedure I have had done despite the fact I had taken vicodin right before going for the test. When the procedure was over and while I was still sitting on the edge of the exam table wiping my eyes and trying to regain some of my dignity, the doctor matter-of-factly informed me of the diagnosis. 

In a monotone he started “You have RSD. This is a prescription for an anti-depressant, this is for amtriptyline, it will help you sleep, this is a script for a TENS unit, this one is for physical therapy every day; you need to take it to the office at the front of the building. This is a script for vicodin, it is for 750 mg, but if that is not enough just call and we will increase it. We will contact the hospital and get a nerve block scheduled as soon as we can. You will need a pain specialist to oversee your care. The nurse will discuss with you the choices for pain specialists in the area.” He handed me another and said “This is a script to have a bone scan done. You need to have it done immediately.” With the last piece of paper he laid in my lap, he stood up and looked down at me and said “I am really sorry. “ He proceeded to walk toward the door. “Wait, why do I need a pain doctor? “ I asked him. “How long does this last? I am behind at work. How long do I have to go to physical therapy? I don’t have time for this!” I blurted out at him.

He looked back at me from the door and with the first sign that there was a real human being in that body he said “RSD is a chronic, incurable disease that is extremely painful. Your job is not your priority anymore, your arm is. If you don’t keep moving it, we will be amputating it before Christmas. I am really sorry.” His words stunned not only me, but the nurse.

“What does RSD stand for?” I turned to the nurse. “I don’t know” she answered. “I never heard of it either. I’ll go get the medical book and look it up for you. “She returned shortly with a 6 inch thick book and rattled off the phase “Reflex Sympathetic Dystrophy”. Dystrophy. I had enough sense about me to know any diagnosis with the word “dystrophy” in it was not a diagnosis I wanted to have. “Do you want me to write it down for you?” she asked. I nodded my head yes. Then I gathered my jacket and purse and prepared to tell my husband in the waiting room the great news. 

We go home and look up RSD on the internet. Big Mistake! This is a nightmare and apparently it’s not going to end. I go from one website to another looking at my future, the pictures of the distorted bodies and the wrenching emails…. I go to bathroom and vomit. This is a mistake. The doctors are wrong. I spend the next hour looking for other possible diagnosis. I can’t accept this and I won’t. There, I am glad I got that settled.

I reported for the bone scan at the hospital the next day. It was the easiest medical procedure I have ever taken. I didn’t even have to take my clothes off. When I was done, I asked the nurse how long before my doctor received the results and she said a few days. But she looked at me oddly and asked me to wait a minute and she disappeared behind a door.

I just knew this would prove to them that they were wrong. The bone scan would show a pinched nerve and they would be able to fix it. Then they would find that I didn’t have this “Really Shitty Disease” after all. In a few minutes she returned. “You realize this is a marker test don’t you Mrs. Freeman?” she asked in the kindest voice, like I was some addle-brained 80 year old. “Marker test? What is a marker test?” “I thought it was a bone scan.” I snapped back at her. “Yes, yes it is a bone scan” she calmly replied “but it is a test your doctor will be ordering every 2 years to track the deterioration of your bones due to your illness. That is why we call it a marker test.”

Physical therapy was grueling. My doctor increased it to twice a day after 2 weeks; he wasn’t impressed with my progress. I foolishly tried to maintain a normal work day, ha. It took 3 weeks from the day I was diagnosed before I actually received my first nerve block which was true nirvana. The pain specialist doctor performed 3 stellate ganglion blocks in that first week and I felt such relief. Although the nerve blocks helped the pain, they did nothing for strength in the arm or the tremors, which were so annoying. Try applying mascara with a shaky hand or taking notes (or reading those notes later).

By this time my arm had drawn up into an awkward position where the elbow bent inward and the forearm rest across the front of me and the hand and fingers dangled. My shoulder had risen till it looked like it could touch my ear. Kathy, one of my physical therapist, would massage it to try to relax it back into its normal position. For the first time in my life, I dreaded massages; I actually cried it was so painful. I felt like such a freak. If I thought I looked a little lopsided 2 months ago I was looking like Igor now.

I rarely used the arm. I had learned to push off the bed with my right arm to get out of bed in the morning. I now used my right hand for everything and when I say everything I mean everything, from brushing my teeth, catching an item tossed to me, or wiping myself. It was as if my left arm was a piece of wood hanging there.

Kathy told me it was important for me to keep using the arm. So I tried, but when I tried to use the arm it would shake, these god-awful embarrassing tremors. And of course, as if that’s not embarrassing enough then my other arm starts to shake too. If I really persists in using the arm and don’t rest, then the legs start shaking as well, so before long I look like I am doing some kind of jig.

In meetings at work I have to take notes and by the end of the meeting I am really shaky. They have started to exclude me from meetings; I am “too distracting”. I understand, it hurts, but I understand. My meeting invites are dwindling, they ask for my feedback via email. Dam them, I hate to type, that is harder than writing. Even though I poise my left hand over the keyboard my right hand respond to the message from the brain to strike the keys. My right hand keeps punching the top of my left hand because it is trying to type the letters that the left hand is resting on. Every time I hit a key that my left hand would naturally press, my right hand races over and clobbers the poor left finger that is poised over the key making me flinch with the pain. Then to add insult to injury the letter will appear twice on the screen. Will I ever type normal again? I am actually sitting here beating the crap out of myself every day. My email inbox is at an all-time high, 214. I call people back instead of writing. I have been “talked to” by my manager for my “curt emails”. Trust me I believe in diplomacy as much as the next person but long live the one-liner!

My manager wants to discuss “my situation” with me today. Funny, before I got sick they wanted me to supervise an additional team but took that offer off the table when I informed them about my diagnosis and need to take some time for physical therapy.

Don’t get me wrong, physical therapy is helping, but I can’t work like this. I am on morphine for the pain, and have had 5 nerve blocks. I am not functioning; I am existing, going through the motions and ready to knell over any minute. I can’t take the pain and I don’t have a lot of options. My new doctor has given me two options, I can try nuerofeedback or do a sympathectomy (cut the nerves to the arm). Of course if I do the sympathectomy I could lose some functioning of the arm and the RSD will come back when the nerves regrow within a year. At this point anything to kill the pain and get back my life. 

I opt to try the nuerofeedback. If it doesn’t work I can always try the sympathectomy. At my first session I am convinced I have wasted my time. I have drove all the way from Muncie to Greenwood, 75 miles one way. I walk into this room and this doctor puts wires on my head and proceeds to tell me to relax. Might as well sprinkle holy water and happy dust on me too for all the good this mumbo-jumbo is going to do lady. But I must admit, Dr. DeLong is nice and easy to talk to.

On my way home, all I can think about is that I have scheduled 4 sessions this week and how much work I am going to miss a lot of work and how am I going to make it up? I pull into MCL to get a quick bite of lunch and contemplate the medical leave option. I know the doctor thinks it is a good idea, and maybe it is time. I am stressed to the max and even at 100 mg the Zoloft is not cutting the depression. I will talk to him about it next month, if I remember. That’s another big problem with this illness, lack of short term memory. Lately, I am duly dubbed the Post-it Note Queen by anyone who steps foot into my office, my poor PC wears them like a garland. My friends will not make lunch plans with me without booking an appointment on outlook so I’ll have a reminder to alert me. I look around MCL, I love this place, it’s gracious and nutritious, and they automatically carry my tray without my asking. Plus I can hide in a corner booth while I shakily down my lunch in peace. 

A strange thing happened; I am on my way home after my third nuerofeedback session. I am happy. No, really, happy. I pull into MCL and I feel good The stars must be lined up right or something because there is an unoccupied booth by the window. I am busy watching the activity outside and stuffing my face then it dawns on me …. MY HAND IS NOT SHAKING!!!! Yahoo! Okay lets not make a scene in here, we do want to come back. I call my husband on my cell phone to tell him. He doesn’t answer… he’s at lunch… no duh. I can’t believe this! Do you know what this means? Eating out again without feeling self-conscious.

The following week my doctor put me on medical leave. By the 5th session my husband noticed the next big change, I was sleeping. No matter what the doctor had gave me I tossed all night. I dreaded going to bed and by the time I really drifted off to sleep it was time to wake up. But now I was sleeping thru the night. I started cutting back on my pain medication and other medications; I was finding I didn’t need the pain medicine as much. I felt for the first time that I really had a shot at remission.

In the RSD support group I belong to, there is one lady that has been in remission for 18 years, she is my idol. We are a strange and sad lot, sitting in a room. At today’s meeting, they accuse me of being Mary Poppin’s. They can’t get over the transformation. My arm looks great. It looks like my other arm and it’s not trembling. So what is this weird, alternative medicine thing I am doing, this biofeedback stuff? Does insurance pay for it? Hell, who cares, what’s the number.

“Am I still on morphine?” asked Mary. “Nope. Been off it about 3 weeks. And coming off that sucked. I won’t take that again” I replied. “Don’t say never” piped in Nadia “You don’t know what lays ahead.” “That’s true. I am just glad to be going into remission” I answered. Then I showed off, I popped the lid to my diet coke in front of them with my left hand. Couldn’t help myself, it had been so long, I was so tired of carrying a fork around with me to open those dam cans with and I hated asking my family to open them for me.

By the 20th session I was off all the medicines and I felt like a new person. My arm was back to normal. When I returned from medical leave they took my supervisor position away from me and gave me a position in a different department. It was a let-down but ultimately it is a less stressful job and in the scheme of things I need to curtail my exposure to stress. I no longer define myself by my career. I look at life differently now. I think about what is really important and how I spend my time. I spend it with people, which is what really matters, jobs don’t matter.

One month after returning to work, I injured my shoulder again. I bumped into the doorjamb while entering a room in our home. My husband’s famous line “Don’t be so clumsy” has won him a place in the Hall of Fame for “Dumbest Things Said to a Spouse”. Fortunately, I love the man and he loves me.

I went into a deep depression that almost cost me my job. I didn’t care about anything, how could I fight this battle again. It took a year last time, was this the way it was going to be? Every time I bump into something or someone bumps into me? What kind of existence is this? Where was I going to find the strength to get on top this time? What if it spreads this time, it usually does from the reinjury. I was in a deeper depression then I could fathom ever getting out of. My husband and friends convinced me to go to a psychologist. She was nice and had worked with RSD patients before, she just couldn’t cure me, she could prescribe an anti-depressant but she just couldn’t cure me.

My employer approached my husband and suggested I do the nuerofeedback again since I had such a tremendous response to it last time. During this time, my regular RSD doctor had handed my case over to the pain specialist doctor. As his nurse stated, since I was obviously chronic I was better suited for the pain specialist’s services instead. I told my pain specialist doctor about the nuerofeedback and he was fine and said go for it. I called my neurofeedback doctor and she sit up some sessions for the following week.

We have had 6 sessions thus far and I am only taking 1 vicodin a day, breaking it in half and spacing it out, on most days. I am walking every morning (even in the wind) and actually sprinting for 5 minutes. I eat most meals now-a-days without trembling. I still have trouble crossing my legs without shaking. My arm still hurts too much to lay on it at night. But I see the light at the end of the tunnel. I am not depressed and I am confident that I have found a way to cope with this illness regardless to what I bump into or whatever bumps into me.