CRPS

My story starts April 1st 2000, I was working at a little casino as the marketing director having the time of my life. I finally made it to the kind of job I studied for in college, and was making some decent money. The casino was small so I also had some other job duties at the same time as the marketing director duties, and they were acting food and beverage director, and interim network administrator. All these duties were keeping me on the job sometimes as high as 18 to 20 hours at a time, and soon as I would get home, and in bed, the phone would ring calling me back to the casino. Even with the extra job titles I was lovin it.

On april 1, 2000 I was on my way down the hill to a meeting in town with some radio station reps, when I started having some funny feelings in my chest, neck, and left arm. So I called my doctor as I was driving along, and he recommended I stop in at the emergency room and get checked out for heart problems. I did, and wish I never did to this day.

They decided because of my family history of heart disease, to keep me over to the next day and do a angiogram. Even though they haven't to this point found any evidence of any heart attack, they thought it wouldn't hurt, and I agreed since my dad had died at age 48 just 2 days after his second triple bypass surgery.

Well at 7:am they rolled me in and did the angiogram, and I don't remember a thing, until I wake up. I wake up in the ICU, and begin to freak out because I know that to be in the ICU means trouble. Once I get the nurse's attention, and ask why Im in the ICU, she tells me that there is no other place to put me, and everything is fine. So Im ok with this for a while, but after a few hours go by, and about a dozen different nurses check the pulse in my feet, Im starting to think maybe they are not telling me something.

So I ask one of the nurses why are they checking the pulse all the time? and she says it is routine, and then I ask when do I go home? and she says when the doctor releases me, and I say "oh" . Well along comes dinner time, and Im still there, and I bet every nurse in the place has checked the pulse in my feet, and I start asking if I am ever going home, or what? They tell me yes when the doctor releases me. So I ask for some food at least, and get some dinner. About 11:pm a nurse comes along and says the doctor has finally released me to go home, and Im thinking thank God! So I was in the ICU for the whole day and half the night before they released me, and I was just a little suspicious of why it took so long, but I was ready to go home.

I finally get home, and into bed, and sleep like a baby all night. The next day I go to work, but only work a few hours before I notice something is totally wrong with my leg. It is getting tired to fast, and aches real bad when I push it. So I have to stop alot and rest to make the pain quit, and Im thinking they must have messed up during the angiogram. The next day I have a speaking engagment at a local University in the marketing classes, and I have to park waaay out, and walk in to the classes. Well I barely make it into the building, my leg feels like it is going to fall off. It hurts so bad. I never have felt pain like this in my life, and then the walk back to my car. Oh my God! I almost didn't make it!

The pain was unbearable, and would not stop this time. Usually I would go back to work after speaking at the colleges, but this time I went straight home, and called the doctor. He told me not to be a baby! That it was gonna hurt, just to take it easy. So I did. But the pain was not relenting, and was aching deep in my leg. I let it go one day, and was calling again, and was getting the same response, just let it heal he told me, but I said No there is something wrong, you need to look at it, but he wouldn't.

I kept trying to make an appointment so much that I started getting an answering machine, and I left messages on that machine, and no one called back. That made me mad! I don't know why I didn't think of the emergency room, but I didn't. Finally I haven't been back to work in 3 days, the pain won't stop, and I am rolling around on the floor screaming in pain it is so bad, and the doctor won't even return my call.
I snapped! I drove straight to his office, and parked right next to his nice sports car with his name on the plates, and thought about doing something to his car right then, but managed to keep my cool. I walked up to his receptionists and asked to see the doctor, and was told I do not have an appointment. I said it was an emergency, and the girl said she knows who I am, and it will be at least 2 weeks. I snapped! I told her that the doctor had 45 minutes to see me, or I would be jumping up and down on his car, tell him please. I went and sat down.

Not 10 minutes went by, and my name was called by the doctor himself, and he was mad! He cussed me all the way back to the exam room giving me reasons why there was nothing wrong with me. The whole time I said nothing. He had me get up on the exam table, and started examining the wrong leg, and then said there is a pulse! That is when I said, wrong leg, and he began to cuss again. Then after listening to the right leg, he says I think I feel a pulse. I am not going for "think" I want there is a pulse like you said on the left leg. He began to cuss again, and got up and called another doctor, and made an appointment for an ultrasound to be done. Then he asked if that was ok with me? I said yes, but today! He began to cuss again, and said how is 30 miutes.

I was off and runnin to get an ultra sound, and my leg was killin me, I knew something was wrong, and could not believe how the last doctor reacted. I know I told him I was gonna jump on his car, but the man didn't have to ignore my calls. All he had to do was see me in the first place? Well the ultra sound was an experience I will never forget ever. The doctor started on the wrong leg just like the last doctor, and I said wrong leg, but he was like I need to get a sound check. Duh lol. You could hear the heart beat everywhere he stuck that little microphone on my left leg, but when he put it on my right leg there was nothing but silence. He could not find a heart beat anywhere in the right leg at all. He sent me straight to the hospital, and told me that he was going to try to save my right leg. Now I was scared, and mad. I had thoughts of having only one leg running through my mind the whole time. It had been 7 days since they blocked the artery during that angiogram.

They saved the leg in a surgery that went almost 5 hours, they say I died in. Plus part of the man made material broke off and traveled down into the calf, and was blocking the flow to the outside of my ankle and foot. The doctor told me it would cause more damage to go after it, then it would to leave it there. He told me he would have to really tear up the calf to get that little clot out, and that would destroy the leg. I would have better luck leaving it there.

Every month I would be in the doctors office complaining that my leg still hurt, even to the point of asking him to cut the leg off a few times. It even forced me to quit working at my dream job in july 2001. That was one sad day for me, but I had no choice because I was worthless to anyone at this point, and had to know just what was going on with the leg.

By Sept 03 a pain managment doctor had me believing my back was the problem, until the back surgeon ran a few tests, and came in and said, You don't have back problems, cya! I made her stop and explain, and she said I do back surgeries, and you don't need one, so cya! It was like JUST WAIT! a minute here, if I don't have back problems, then what do I have? Then she said have you ever heard of RSD? I never had, but I intended to find out.

The vascular doc looked me over for about 15 minutes, then says I have RSD. But he didn't stop there he told me about the history of RSD, and how it has been known since the civil war, and usually follows severe injuries to limbs. Just like the kind of injury I suffered, the kind where there is hypoxia, or ischemia, which means lack of oxygen in the blood.

This doctor took about 45 minutes with me, and described everything, and answered all my questions. When I left his office I was crying with relief that someone knew that my pain was real, and he believed me, and it had a name. I learned that RSD has the highest pain level known to mankind, and there is no known cure for it. RSD can and usually does spread from the original site to other places in the body. I have learned from experience that it can highjack your nervous system causing all kinds of problems.

In 2005 I thought I was having heart attacks....I know it was what got me in this mess lol. But it got so bad one night I called the 911, and rode the ambulance to the ER. You know I had to be scared if I was calling 911. It was humiliating because everyone was treating me like a drug addict after they saw the kinds of pain meds I was taking. They found out that the RSD highjacked my nervous system, and was causing me to have fake heart attacks.

Finally today the RSD is still messing with my nervous system, and is spreading around my body. I finally won SSDI in august 2007 with the judge setting my disability onset back to july 2001, the same date I had to stop working. It feels good to finally get the benefits, but it was the hardest 6 years I have ever lived so far. I will probably never be able to replace all that I have lost, but I will try to continue keeping a positive attitude, and sharing everything I know about RSD with anyone that will listen.