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To: Elliott Re: Previous RSD Discussion

Posted by Janet C on 8/12/02 at 19:25 (092308)

Hi Elliott,

I'm sorry that I never got back to you before, when we were having a discussion about RSD on the Ask the Dr's Forum, but my son came down with appendicitis, and I was suddenly diverted to tending to his immediate needs. But I reviewed the postings, and I wanted to write you back in regards to some of the comments you made.

The first point I'd like to make to you is that I've discovered from reading and posting on other message boards specifically for people with RSD and their loved ones, that most of us not only DON'T have a low tolerance for pain, but actually just the opposite. Although a definitive cause has never been discovered for RSD, I've read that RSD can result when pain is insufficiently treated. And when reviewing each of our experiences, it becomes apparent that many of us have been the type of people who pushed ourselves, despite the pain, for too many years.

Another revelation that I've discovered is that the greatest percentage of the people who become disabled by RSD have been deemed to be typical 'Type A' personalities. As an example, one of the girls I've gotten to know had to give up her lifelong dream to be an Olympic gymnast due to RSD. It seems that most of us probably pushed our bodies much too hard, and tried our best to ignore the pain for much too long.

Another point that you made was concerning the fact that many people with RSD, when asked what their pain was on a scale of 1 10, declared that their pain was a 10, all the while answering rather matter of factly, without writhing on the floor as your PT expected. Let me begin by clarifying that I rarely, if never announce that my pain is a 10. Although I admit that 'natural' childbirth was right up there, I feel that if my pain is a 10, I need to be in the hospital. However, I readily admit that my pain has been hovering between a 7 9 for several years now. And when it's a 9, I'm most assuredly on the floor, writhing, moaning and groaning from the pain.

I think that the reason so many sufferers claim that the pain associated with RSD is so high, is because it can be so incapacitating, and it doesn't subside. The pain from RSD has left me basically bed-bound, and I have to use a wheelchair, not because I can't walk, but because it's just too painful to walk. And as I previously mentioned, childbirth was one of the most painful experiences I could ever imagine, but thank goodness it ended! However, the pain from RSD NEVER ends, and I think that the constant, incessant, unrelenting, debilitating, agonizing, excruciating, infernal pain from RSD is why so many sufferers claim that the pain is so high on the pain scale.

RSD has altered our lives in so many ways, and I think there is no possible way to explain it to those who will never understand, like your PT.

I also wanted to thank you for responding to Dr. Ed for me, and informing him of the Web site from where I obtained my info. Again, I apologize for taking so long to get back to you, and I hope you don't mind me re-opening this discussion. But I think that those suffering from TTS, who continue to push themselves despite the pain, and those who agree to have surgery, may be contributing to their chances of getting this horrific disease, and should be made more aware of the possible consequences.

With best wishes always ~ Janet

Re: nothing much to add

elliott on 8/13/02 at 15:18 (092376)

Maybe the PT, having seen a large number of patients, has a different perspective. Maybe it's the patients he gets. Maybe he's just wrong. We'll probably never know.

As you know, some get RSD as a spontaneous reaction to surgery. Even if the PT's observations have some merit, maybe it wouldn't apply as much to this group. Last time I was at the orthopedist's office, many of us were waiting over an hour in the crowded waiting room, and (I won't get into the yoga I started doing and the commotion it caused :-)) I began trading stories with the woman on the other side of the sofa; she was very attractive, the kind I'd think nothing bad could ever happen to (anyone else ever think that?). She had had 14 surgeries after falling and fracturing her ankle, an ordeal all the more traumatic given she had three young kids at home. In her last surgery, she got a titanium ankle and now walks better than me; she was there to have the stitches removed. In her second-to-last surgery, she contracted RSD, but they caught it quick and she got over it with treatment. She certainly looked sane to me. But that guy I saw at my PT's who claimed he had RSD, now he was a strange dude...

I can understand what high-level continuous prolonged pain can be like, what it can do to the nervous system and body, since I went through it myself. Until a month ago, the combined pain from my nervy left foot, weak right foot, sciatica, and a few other things almost did me in. The nervy things have now dropped a few notches in pain level to the point where I almost believe they might actually get better, and have made life oh so more tolerable. I still feel I need a lot more time before that racing heart feeling I had completely subsides. If I had it to do over again, I would have gone to pain mgmt.

---

Re: To: Elliott Re: Previous RSD Discussion

Susie on 8/13/02 at 20:32 (092397)

Janet, Very well said...... a rsd friend susie

Re: To: Elliott Re: Previous RSD Discussion

Janet C on 8/13/02 at 22:16 (092413)

Thank you, Susie! Obviously, this is a subject that I feel very strongly about.

Elliott, I think it's an obvious fact that RSD affects people from all walks of life; race, nationality, males and females, young and old, tall and short, fat and thin, sophisticated, and those one card short of a full deck! :-)

I'm glad to hear that the 'nervy' pain you've been experiencing has been on the decline lately, and I hope that you continue to improve. But perhaps you should still consider making an appt. with a reputable pain management physician. They might have ideas for your treatment that you haven't tried, nor even considered yet, which could be the key to a renewed life.

I know it's amazing what even a couple of notches of pain relief can do to one's disposition. Finally, the future can look hopeful again! For those who may still be suffering with an immense amount of pain, please remember that there are many options available for pain relief. No two individuals are the same, and have the same exact symptoms, and what helps one person, may not benefit another. But we need to keep trying until we each find the combination of treatment modalities that work best for each one of us.

Just remember: God gave disabilities to extraordinary contenders to level the playing field! :-)

All the best ~ Janet

Re: To: Elliott Re: Previous RSD Discussion

Tammie on 8/15/02 at 20:46 (092621)

Thank you Janet!!! You said alot that helped me I always will thank u for helping me thru this mess! It sure is not fun and I know what u mean about a scale of 1-10 and never saying a 10. I understand the type of pain felt I also have seen the look of so many who think it is a kick and I am off my rocker coming in for me crazy pills. I had to drop my pride one more notch tonight! One of the touch ones that u hate to do but gotta.

My daughters first day of cheering meet the team night! Simply to most, not for me , I tried to get out pleasantly as the feild is quite the walk and this has been a very bad pain week with my block. How could I look into her pleading eyes again to tell her no I cant I hurt to much? She just came home from a cheer camp this am.

I just had to go and I did,I took the ugly cane that is always looking at me I went and I hurt but I seen my beautiful daughter not only a cheerleader but a young woman so outgoing and warm it reminded me of what is good about having this . My family my daughter today I have things to fight for thats what I am doing not giving up on this . You are a model along with Laurie I look to yous and think they are dealing with it and so can I ! Thank you Janet thank u for all that you have said here and thank you for all that you have done with emailing me with interesting help and things to read and just for caring and helping me to understand this ugly prospect of treaments that we recieve and the meds some times they are the worse. my daughter says mom u are stoned she always can tell what meds I am on that hurts me having her know about all the medications to help pain. She calls it stoned and u know a few months ago I would have also. so hear i am thanking you my dear friends for helping me about the meds I take and what to talk with and what to look for for my visit at his office. Again just Thank you you are the angel to one side and the other side that is strong and pulling is Laurie she is a gem and a sweet heart who could be in such better folds me with my angels helping to hold me up when i fall and letting me hold them when they need it. Thanks!

Re: Thank you, Tammie!

Janet C on 8/16/02 at 14:01 (092672)

Thank you so much for all your warm, kind words, Tammie! I am so glad that some of the things I've written or sent you has helped you in some way!

When I am able to go outside of myself, and my illness.. to reach out and share some info... when I focus on the needs of others.. and when I realize that I've touched someone else's life in a positive way... it really makes me feel wonderful! So thank YOU for making my day!

Take care, sweet friend! Love ~ Janet

Re: nothing much to add

elliott on 8/13/02 at 15:18 (092376)

Maybe the PT, having seen a large number of patients, has a different perspective. Maybe it's the patients he gets. Maybe he's just wrong. We'll probably never know.

As you know, some get RSD as a spontaneous reaction to surgery. Even if the PT's observations have some merit, maybe it wouldn't apply as much to this group. Last time I was at the orthopedist's office, many of us were waiting over an hour in the crowded waiting room, and (I won't get into the yoga I started doing and the commotion it caused :-)) I began trading stories with the woman on the other side of the sofa; she was very attractive, the kind I'd think nothing bad could ever happen to (anyone else ever think that?). She had had 14 surgeries after falling and fracturing her ankle, an ordeal all the more traumatic given she had three young kids at home. In her last surgery, she got a titanium ankle and now walks better than me; she was there to have the stitches removed. In her second-to-last surgery, she contracted RSD, but they caught it quick and she got over it with treatment. She certainly looked sane to me. But that guy I saw at my PT's who claimed he had RSD, now he was a strange dude...

I can understand what high-level continuous prolonged pain can be like, what it can do to the nervous system and body, since I went through it myself. Until a month ago, the combined pain from my nervy left foot, weak right foot, sciatica, and a few other things almost did me in. The nervy things have now dropped a few notches in pain level to the point where I almost believe they might actually get better, and have made life oh so more tolerable. I still feel I need a lot more time before that racing heart feeling I had completely subsides. If I had it to do over again, I would have gone to pain mgmt.

---

Re: To: Elliott Re: Previous RSD Discussion

Susie on 8/13/02 at 20:32 (092397)

Janet, Very well said...... a rsd friend susie

Re: To: Elliott Re: Previous RSD Discussion

Janet C on 8/13/02 at 22:16 (092413)

Thank you, Susie! Obviously, this is a subject that I feel very strongly about.

Elliott, I think it's an obvious fact that RSD affects people from all walks of life; race, nationality, males and females, young and old, tall and short, fat and thin, sophisticated, and those one card short of a full deck! :-)

I'm glad to hear that the 'nervy' pain you've been experiencing has been on the decline lately, and I hope that you continue to improve. But perhaps you should still consider making an appt. with a reputable pain management physician. They might have ideas for your treatment that you haven't tried, nor even considered yet, which could be the key to a renewed life.

I know it's amazing what even a couple of notches of pain relief can do to one's disposition. Finally, the future can look hopeful again! For those who may still be suffering with an immense amount of pain, please remember that there are many options available for pain relief. No two individuals are the same, and have the same exact symptoms, and what helps one person, may not benefit another. But we need to keep trying until we each find the combination of treatment modalities that work best for each one of us.

Just remember: God gave disabilities to extraordinary contenders to level the playing field! :-)

All the best ~ Janet

Re: To: Elliott Re: Previous RSD Discussion

Tammie on 8/15/02 at 20:46 (092621)

Thank you Janet!!! You said alot that helped me I always will thank u for helping me thru this mess! It sure is not fun and I know what u mean about a scale of 1-10 and never saying a 10. I understand the type of pain felt I also have seen the look of so many who think it is a kick and I am off my rocker coming in for me crazy pills. I had to drop my pride one more notch tonight! One of the touch ones that u hate to do but gotta.

My daughters first day of cheering meet the team night! Simply to most, not for me , I tried to get out pleasantly as the feild is quite the walk and this has been a very bad pain week with my block. How could I look into her pleading eyes again to tell her no I cant I hurt to much? She just came home from a cheer camp this am.

I just had to go and I did,I took the ugly cane that is always looking at me I went and I hurt but I seen my beautiful daughter not only a cheerleader but a young woman so outgoing and warm it reminded me of what is good about having this . My family my daughter today I have things to fight for thats what I am doing not giving up on this . You are a model along with Laurie I look to yous and think they are dealing with it and so can I ! Thank you Janet thank u for all that you have said here and thank you for all that you have done with emailing me with interesting help and things to read and just for caring and helping me to understand this ugly prospect of treaments that we recieve and the meds some times they are the worse. my daughter says mom u are stoned she always can tell what meds I am on that hurts me having her know about all the medications to help pain. She calls it stoned and u know a few months ago I would have also. so hear i am thanking you my dear friends for helping me about the meds I take and what to talk with and what to look for for my visit at his office. Again just Thank you you are the angel to one side and the other side that is strong and pulling is Laurie she is a gem and a sweet heart who could be in such better folds me with my angels helping to hold me up when i fall and letting me hold them when they need it. Thanks!

Re: Thank you, Tammie!

Janet C on 8/16/02 at 14:01 (092672)

Thank you so much for all your warm, kind words, Tammie! I am so glad that some of the things I've written or sent you has helped you in some way!

When I am able to go outside of myself, and my illness.. to reach out and share some info... when I focus on the needs of others.. and when I realize that I've touched someone else's life in a positive way... it really makes me feel wonderful! So thank YOU for making my day!

Take care, sweet friend! Love ~ Janet