Story Board (personal RSD stories) No.23

David - Clearwater Florida

About 7 ½ months ago my right leg swelled up and had very strong pain inside and on the skin. After 2 months of tests they decided I had RSD. They shipped me off to a pain management group and put me on pain pills plus some other drugs. When that did not work they did 3 nerve blocks and after that they did an epidural. When that failed too, the group who had told me "we know how to treat RSD" said "doh! we don't know what to do!". So I found my own doctor, who said I was in stage 3 of RSD and why didn't the other doctors see that? Byt this time the other leg was also affected. Dr. Barsa then said I needed to have a dual dorsal column stimulator put in, but the insurance would pay for the doctor and the stimulator but not the hospital, so I had to start all over again. I transferred to Dr. Michael Solomon and, after a couple of weeks, I a had a temporary stimulator installed. It is great! I finally had my first good night sleep in a long time. The pain level is down to 20 percent of what it was and I can walk almost normally once more. The hard part now is to get the legs working again, but in 2 weeks I should have a permanent unit fitted, whereupon the fun begins!
UPDATE - February 2002
I have an update for you… My SCS was working great until the probes moved again for the third time. I am going for surgery in about 3 weeks to have a new type of probes put in where they sew the probes to the area. The probes are on a flexible pad that gets sewn to the spinal area and then fed down the back to the stimulator. I had to have my SCS turned off so I did not waste the battery - so the PAIN is back and so is the sleeplessness and the pain killers and the swelling in my legs and back. So I know the SCS has been working and I can't wait until I have the SCS turned back on so I can enjoy the pain relief again.

Another correspondent writes -

By June this year (2001) it will be 3 years since I was diagnosed with RSD. I had an industrial accident and injured my left upper area including my left shoulder and clavicle area. I have had external pumps, a spinal column stimulator and an intracatheral pump implant in the abdomen but all has failed. I now take oxycontin, lamictal, naprosyn, rocecodone, doxepin, clonzapam and feel like a walking drug store. I have severe pain and burning with color changes at all times and sleep deprivation along with depression. I am unable to do the things I once took for granted and hate my life as we speak. I feel at the stage I'm in my doctor has deemed me MMI which pretty much states I'm as good as I'm ever going to get. I think the best medicine anyone with RSD could ever ask for is a listening pair of ears as no one knows what we go through on a daily basis and until you have experienced the devastation it makes on your once natural life, you can't even begin to know where that person is coming from. I sometimes believe that even the doctors don't know which way to turn. Thank you for the brief moment to explain my situation as I have very few people who really understand what I deal with every day of my life. But I do have a very supportive husband who has been there for me every operation and every step of this nightmare. Thank you for listening.

Sue Sutterfield

Reading all the stories and information regarding RSD made me feel less alone... Mine began after carpal tunnel surgery. I had worked for many years had a very active life doing all the things normal people do - then everything changed. First they say you're faking; then they insult your intelligence by sending you to a counselor and all the time the pain is killing you and you don't understand why. Mine started in 1995 and after being sent to more quacks that I care to remember I was finally sent to a pain management doctor. Now remember this had been going on for almost two years at that time… Well this wonderful doctor took one look at me and said "my God has no one done anything for you. You have RSD and are in the third stage now and I don't know what I can do".

I began to cry. My whole life had been destroyed. I had blocks, medication and more medication none of which helped. These unfit-to-practice doctors had just about destroyed my mind! It's so tragic when you know something is wrong and they keep telling you it's in your head. Also, your employer who, when all this started, considered you a darling, now considers you a liability and wants rid of you ASAP. It's now been five years and I have learned to cope (at least I try). But all the stress, pain and self-doubt I lived with before I found an understanding doctor caused me to have heart problems which could have been avoided.

YES, I have learned to do things a different way ....you can do that if you try. First listen to your own self and just keep trying. Keep taking the medications even though you hate it - it could be worse. If your doctor is not listening to you - GET RID OF HIM HE IS NOT YOUR FRIEND.
There are plenty of listening, caring doctors so, if you find yourself with Sue's problems, take her advice and look around. Derrick

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