RSD and Me

RSD - Reflex Sympathetic Dystrophy Syndrome

I’m writing this story to help get awareness out there for something that I have lived with for six years now. RSD, also known as Reflex Sympathetic Dystrophy Syndrome, is very painful and debilitating disorder. Someone just touching a person who has RSD can cause pain to that person with the slightest touch to the area where the RSD is affecting the person. For me, it’s my right arm. Here is my story, one I’ve told thousands of times in the last six years.

On October 26th, 2004 I was working in a factory running a molding machine. This machine was simple and I thought safer than any other machine in the factory. I started this job in May 2003 and worked the same machine most of the time. There were times were I was put on other jobs, those of which I didn’t care for as much as I liked my machine. All I had to do was take little plastic pieces out of the machine, close the door and check the pieces over for faults. If they passed my inspection, I put the pieces in a box to be sent off and trimmed. If they didn’t pass inspection, they went into a box with other plastic pieces to be recycled. By time I got the parts in the box, the door was ready to be opened again with new parts to be taken out. I was fast on my machine, bringing in thousands of parts a day. I knew the machine well, to the point that I was even doing my own mold changes.

The person who trained me on the machine was very nice and really seemed to be the only one who really cared about my area. When he was working there I had fresh plastic daily. I had my work orders lined up for me to know what I needed, and if I had any questions he was there to help me. Though during the summer of 2004, he left the company.

One of the things he taught me, and everyone else who ran this machine, was how to drain the hot plastic between jobs or when on a break. I would do this 3 to 5 times a night, usually I’d be sitting on my metal stool for this part of the job since I didn’t have have to react quickly like I did with the remove and inspection of the plastic pieces. First I pressed a button that had an arrow key. It would pull the barrel that injected the hot plastic into the molding machine off of the machine, than I look down below the barrel to see these tiny wires that would drag and stay under where the hot plastic would drip out onto them. I would use the screw driver to push the wires out of the way so that they were not damaged by the hot plastic that would be oozing out of the nozzle. Then I hit a different arrow button on my controls, this one made it so the nozzle would spit out the hot plastic that’s sitting in it, so that when we start the machine back up there wouldn’t be overheated plastic with air bubbles. I could then go on with my break or mold change.

It never occurred to me that this could be dangerous. If it was dangerous, why would they have me doing it? My foreman did this the same way, as did everyone who worked the machine used that screw driver. So I felt safe.

I remember the day of this event very well, it was a Tuesday. I stayed home sick on Monday and didn’t really feel like going in on Tuesday, but knew that I hated missing work. So instead of trying to catch up on my rest, I went in to work. When I got there, the first thing I had to do was a mold change. This mold change was being a bit of a problem from the get go, as I had a hard time finding the mold I needed. I finally found it and got the machine put together. Since it was the beginning of the day I figured I’d remain standing while draining the nozzle to put it back on the machine. I walked over, took the screw driver and went to move the wires. This time was different from any other as my screw drive touched an exposed part of the wire, where the coating protecting us was wearing thin.

A shock went through me. I couldn’t move. I swore. I yelled for help. But no one came. I remember shifting my eyes around scared, just wanting to drop the screw driver. When I finally did drop it, I went to the ground as well. The room was spinning as I knelt there. My right arm, which was holding the screw driver, was throbbing in pain. I pulled it close to my body as I stayed down breathing on the ground for a few minutes. I’ve been hurt enough in my life to realize you have to regain focus before moving forward.

Once I felt in enough control, I got up going to the other building where my foreman was working. My line to him was “I was electrocuted by a bad wire on my machine.” He showed no concern for me. He just walked pass me and I followed. We went to my machine, as he grabbed some brown paper tape, really crappy tape that we use to put our boxes together, and wrapped that around the wire. His line to me was “This is the wire that heats your nozzle, it should be good to go now.” Than he walked away.

I stood there in shock for a moment, just watching him walk away. I knew my face was covered in tears from crying, I knew I was feeling pain from what had happened. But all I could ask myself was, “Am I overreacting?” I certainly thought that if this was a big deal he would of said something. I’m in the Union and the UAW, which is big here in Michigan. I took a few deep breaths and convinced myself that I was overreacting and that my foreman would care enough about me to say something if this was serious. So I tried to work my machine, but it was down. So I walked back up to my foreman, still holding my arm. “My Machine is not working” I said. He sent me to work in another department.

The job he gave me was one I had done countless times. It’s a two arm job called “O Rings.” You take little rubber rings and force them into plastic rings that have a slit that is just a size to small to get it in there easily to ensure that the o rings do not come out easily. It’s a hard job, but I can normally get 500 to 1000 of these done in an hour. So I went over to that area and sat down starting to work on the o rings. My right arm hurt too much to use it so I worked at using my left hand only. I would hammer at the rubber ring until it got into the plastic ring. About 40 minutes went by before the inspector got there. Now our inspector here has been a friend of mine since I started the job in 2003. She’s caring, has a great personality and is someone who just wants to see the job done right. When she saw me cradling my right arm, tears going down my face, and trying to handle the O-Rings left handed she was the first to show concern.

“Michele, are you ok?” She asked me.
“Were you told I was electrocuted by my machine?” I replied.
“No, were you sent to the client?”
“No. No one even mentioned doctors.”

The inspector was upset to hear this and went to talk to my foreman. A few minutes later he came up to me only to give me a green paper and tell me how to drive to the client. I went and got in the car. Using a headset, I called my dad on the way to the client to tell him what happened. My dad works for a different factory and is also a member of the UAW. He was shocked and angry to hear that they had me driving with electricity going through my heart. I was a danger to myself and others just being behind the wheel of a car. My dad decided to meet me at the client. Once I got there, the doctors also yelled at me for driving. They sent me to the Hospital, and there I sat as they did an EKG.

As they were checking me out at the Hospital, I complained. “My right arm hurts.” They said it was muscle pain. I complained about it through the night, realizing there was more to this than just muscle pain. They sent me home without any pain killers or anything, but with orders not to return to work until I go back to the Client, which was going to be Thursday.

Not knowing how Worker Comp worked, my mom wanted our normal doctors to know what was going on. So Wednesday she brought me to the doctors. They said they can’t handle this case, but found my complaints about my arm weird. They said nerve damage, as we were fearing it could be, would make it so I couldn’t feel at all.

On Thursday, I went to the Client and was seen by this lady doctor, whom I didn’t much care for her as she showed little to no interest in really what was wrong with me. She quickly wanted to send me back to work. I complained about my arm to her and she acted as if I was overreacting. She signed me up for therapy and gave me a note to return to work on limited restrictions. Though I know the factory I worked at, there were no “one armed job” in the full factory. So I brought the note in and the lady there tried to put me back to work. She said O-Rings, I pointed out that’s two arms. She said Sweeping, I pointed out that was a two arm job as well. I pointed out how every job here is two armed, it would be pointless to have me just standing around here while we’re trying to find out what’s wrong with me. So they took this note as an excused absence.

November started to go by, everyday finding new pains and realizing that I don’t like the lady doctor even more. She tried to tell me I was getting better. I held up my arm and said “It’s still swollen!” Her reply, as she stood across the room near the door, was “that looks normal to me.” So I complained to Worker’s Comp, which is when they gave me another doctor. This doctor was even worse. He held a test, it came back okay. According to him, nothing wrong and he dropped my case! Worker’s Comp dropped me on December 7th, 2004 with “There is nothing wrong, go back to work with no restrictions”.

That was Bull! My arm was still in pain, it was still swollen and still weaker than it use to be. So I called in sick for one week, with no doctors note as my mom got me in with her Neurologist. This doctor started to write notes and work with me on trying to find out what was wrong.

Nine Months later I won my case against Worker Comp and was receiving an income again. Yet, we still did not have a name for what was wrong with me. Instead, I had life changing events happening with me by finding new fears and new problems. I kept learning things I could not do anymore and not finding any answers on getting better. Losing everything that I enjoyed in life and to scared to really push myself with the arm in hopes that it could get better. Though every medication, every doctor visit, and every stop at the lawyer office just made me feel more and more lost. This pain was not going away. I couldn’t workout so I found myself hiding at home most of the time. I gained a lot of weight with depression. The hyper side of me wanted to go out and do stuff, while the other side of me is embarrassed every time I’d go down in pain.

In May 2006, my doctor sent me to a pain doctor. This pain doctor did some tests and right away knew what was wrong with me. He started trying new things one of which being a nerve block. The first nerve block he did was shots right through my neck, though those shots did not really help. So they tried out for a nerve block that would go in my arm pit. This one helped, but only for a week at a time. The first day I couldn’t feel or even tell where my arm was for hours. Then when I’d get movement back, it didn’t hurt. Oh, how I enjoyed that little bit of time of being able to live again. But I learned the more I used my arm, the more I did, the faster the pain would return. So, this solution was not becoming long term solution at all. It was just a small dose of what my life use to be like.

Through the pain doctor I learned of RSD and did some research on it. The information I found scares me even more so, realizing how bad this can really get. They tried other things to help me with the pain. One being a tense unit, which would mildly help me. Though the connectors would not stay attached to my skin. No matter what I tried, it would peel off and start shocking me in areas it wasn’t suppose to be touching. They even tried the glove with me. Once again a failure because of pieces needing to be connected to my back. The hope of being out of pain was fading, till they mentioned a surgery.

3 Minutes and 10 seconds into this video I talk about RSD in my life.

In May 2008, I had a test-trial surgery. It worked. A week with wire in my back, disguising the pain. I could go outside without a coat and the wind did not hurt. I could ride in the car with the window down. I could give high fives. And I could sleep! Oh the dreams this gave me of starting to get a some what normal life back. Though when they called me in July to get the real surgery done, my blood work screwed everything up. It was not till early 2010 that the doctors once again showed interest in trying to help with my RSD. The Blood tests came out good, and they did the test surgery again. A tease as to what they can really do for me, but here I sit with no surgery and I fear the pain as of two weeks ago is spreading into my right leg.

RSD is 24/7 pain, a loss of abilities that I once enjoyed, depression, hiding away, being treated different by the people who care about you because they don’t want to hurt you, having to always stay on guard, and just never feeling like yourself again. It’s a nightmare of walking in a body that you no longer feel is your own and with no escape.

What is really bad about this? No one knows about it. RSD is one of those disorders that when you bring it up, people give you the look. If you go down because some touches you, they give you strange looks like you’re overacting. No one knows just what you’re going through. It’s a lonely feeling.

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God bless you, dear woman. You must be one of the strongest people I've ever seen. Geez, how do you cope with RSD in your life?! o.0 And wow, those doctors don't even seem to be taking your condition all that seriously! Don't they KNOW that it's an emergency situation for you and has been since 2004?!
But anyway, I admire you, Michele. You seem like such a fighter and from your story, it seems that you've been a fighter all your life what with the bullying you faced as a kid. Stay strong and have hope. <3