Let me begin by thanking all of the dedicated, friendly and helpful people who are associated with the RLS Foundation. Your work is truly amazing.
I began having problems with RLS as a child. (I am now 54.) I was always the kid who got smacked by the nuns because I couldn't sit still in class or stand straight when I was in line. This was at least as early as third grade. I was also always sleepy during the day.
By high school, my symptoms had expanded to include pain. The pain was only periodic, something like three or four days a month. By my mid to late 20's the pain got to the point that it happened almost every day, mostly at night. By my mid 30's the pain was 24 hours a day 7 days a week.
By the time I hit 40, pain was my primary symptom and it was severe. I finally started to seek medicaL help. Also about that same time, my sister told me that she had been diagnosed with RLS. We also talked about the fact that our late father always complained about pain in his legs. My sister has the more traditional symptoms - jumpy legs, crawling worms etc. She now has gotten good relief with Mirapex and an occasional Ultram.
I saw various doctors included an outstanding sleep doctor who immediately diagnosed me as having RLS. We tried every medication cocktail under the sun but nothing worked. I eventually ended up at the sleep clinic at Johns Hopkins. I saw a renowned RLS doctor. (I don't want to mention names but those of you who've been involved with the foundation at all, know who he is.) He told me that there is a very small group of people who are a) male, b) RLS symptoms began very early in life and c) whose primary or only symptom manifests itself as pain. He had me drop most of the RLS meds that I was taking, add a another med and directed me to start seeing a pain specialist.
The reason that I am writing this is to try to get in contact with someone who either has or is familiar with my situation. I have been a reader of Night Walkers and other publications for years and I have never heard about anyone in my situation. I currently am on a pretty heavy cocktail of medication. Unfortunately, my pain is still bad. I had to quit a job that I truly loved last October. I am currently dancing with the folks in Social Security to see if there is any way that I can qualify for disability benefits.
I have, over the years, tried every medication ever mentioned in your fine literature. I am ecstatic for the folks who say that they have been cured by a no sugar diet, or green tea or this med or that one. Unfortunately, none of this works for me. I have seen doctors all over the country. I have had spinal pumps with morphine, and electrical nerve blocks etc. None of it has worked. The good news is that out of all of this testing, I have learned that my problem is not in my legs and my spinal cord is just fine. My problem has been identified as some sort of malfunction in an as yet unidentified area of my brain. I do not mean a psychological problem. Mine is physiological.
Please understand that I am not crying or complaining or asking for sympathy. I have a wonderful life with a fantastic wife and live in a great neighborhood and community. With this minor exception, my wife and I are both healthy and have wonderful families.
I guess my main purpose is to tell anyone else who finds themselves in a situation like mine, they can take comfort in the fact they are not alone. There are others of us out there who say"Welcome to the club. Take it easy. Things could be a whole lot worse".
Thank you all for enduring my rambling. Feel free to contact me. I live in Kansas City if that means anything to you.
Best regards to all of you and I hope that tonight is a good night for you.
Tom
I, on the other hand, sit here basking in my brilliance. I have not yet, been able, to settle upon my exact rank relative to Einstein and the others. I am, of course, too humble to just go ahead and grab the top spot. I will let history and public opinion decide all of that.
