Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-08-2008, 09:36 PM #1
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Frown Rsd has claimed another victim.

I read the following story in my morning paper and I was stunned. It is so hard to read about someone who felt there was no other way. I know what rsd is, what it does, and stories like this make me so sad.

I do not know what all was going through his mind, but I do know the pain, and maybe we can reach out and help someone else get over the crisis moments.

I wish the article had some information about support groups or internet forums like this one. It does help. There were days when I was in crazy pain and came here, and thoughtful, caring people responded and helped me through those hard times.

I am planning to write a letter to the editor about how rsd sufferers can find others who really, really, know what they are going through and how they can find us here in these forums or in local support groups.

If there is anything you would like for me to put into the letter or if you think there is something else I need to mention please contact me.

I hope you are painfree each & every day,
KathyWP

Georgetown man who appeared on Supernanny dies
By Jillian Ogawa
jogawa@herald-leader.com
GEORGETOWN — A Georgetown man struggled for years, battling a painful spine injury and fighting to obtain Social Security benefits. He even reached out to a television reality show, hoping to be a better dad to his two sons.


Friday night, his struggle ended in a Georgetown cemetery. Scott Terrill died of a self-inflicted gunshot wound to the chest after a 90-minute standoff with police.


Terrill carried ”a lot of emotional baggage from the past,“ said Dwayne Russell, pastor of Safe Harbor Baptist Fellowship in Georgetown, who will officiate at his funeral.


Despite those trials, Terrill was a dedicated father, Russell said. His appearance on a Supernanny episode that first aired in January showed his ”desire to be a better dad.“


Terrill, 37, suffered from reflex sympathetic dystrophy since an accident about five years ago, said his mother, Margaret Ng.


The disorder causes sufferers to feel continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. There is no cure.


Terrill had tried getting a job to work from home, but he could only sit up only a certain amount of hours of the day, Ng said.


”It might not have looked like it on the TV, but he could not get up for more than a couple hours a day because of the RSD,“ she said.


The Supernanny episode featuring Terrill first aired on Jan. 23. Terrill said he had struggled to set boundaries for his sons, Lane and Tate, who were 11 and 5 at the time, because of his own harsh childhood.


In an attempt to avoid repeating the past, Terrill went to the other extreme, where he could not set discipline in his home.


Terrill later became the mascot for the show's ”Foxy Dad of the Year“ competition.


Ng said Terrill went camping with his sons and was also involved with his eldest son's soccer and his children's schooling.


”He was a loving father with a big heart,“ Ng said.


On Friday, Terrill called Georgetown police about 6:50 p.m., Capt. Scott Starns said Monday. He told police he was thinking of killing himself and had a gun.


Terrill asked to speak to Police Chief Greg Reeves, and told him he was at his father's grave at the Georgetown Cemetery.


Officers went to the cemetery, blocking off the scene and evacuating some of the houses nearby.


As he talked to officers, Terrill had a .38-caliber handgun pressed to his chest the whole time, Starns said.


”About an hour and a half into this whole scenario, they thought progress was being made, and he just abruptly squeezed the trigger,“ Starns said.


Scott County Coroner John Goble pronounced Terrill dead at Georgetown Community Hospital about 9 p.m.


Terrill grew up in Georgetown and attended Lexington Catholic High School, where he played basketball. He obtained his GED and went to one year of college at Morehead State University, Ng said.


In 2002 he ran in the Republican primary for a state House seat against Charlie Hoffman, but lost.


At Safe Harbor Baptist Fellowship, Russell said he had not seen or spoken to Terrill in six or seven months. But he said Terrill, a likeable guy who had been active in the church, had remained in contact with other church members.


Terrill's death has greatly affected his congregation, Russell said. Many watched Terrill grow up, and church members have helped take care of his children.


”People who are struggling with those emotional struggles, they need to get connected with other people,“ he said. ”Not one of us as human beings could handle the stresses and struggles of life by ourselves.“
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Old 07-08-2008, 10:55 PM #2
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Shocked I will send this to the Governer and SSD and SSI they need to do something

How very sad this is, my heart goes out to the kid. What can we possible do to get awareness, i have tryed everything my body can take. You real know what makes me mad, Stars like Paula whats her problem cant she speak for all of us. Know instend she thinking about being on the show dancing with the stars. Now i try not to judge but give me a break. I can only wash my hair twice a week, but she can dance. She makes Rsd suffers look like fools look at me i have rsd and i can still do everthing. Great thats going to help us.
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Old 07-09-2008, 12:26 AM #3
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It's so hard for non-sufferers to understand.

Really I don't understand what's going on half the time myself. The most insignificant tasks become mountains to climb yet we often look nearly normal. An awful lot of the doctors don't understand either. There was one gastroenterologist who asked me my pain level when he was examing me for a severe case of diverticulitis and was surprised when I told him my pain level was down and only 2 or 3. He said most people with this condition report much higher pain levels. I told him that I was talking about my hand and the diverticulitis was hardly noticeable unless he pushed on my abdomen. He suddenly understood.

It seems that the problems in our lives are wrapped up closely with the disease. I'm not sure which feeds off the other or if our lives just degrade with our health. I think all any of us really want is some understanding and that's the great strenght of groups like this. We may not always understand what we ourselves are experiencing but it seems easier to empathize when others describe their problems.

Scott Terrill has found his peace but the worst part is that I can understand the agony which brought him to this. It's not only a huge price he paid in his final moments but it is society's loss as well.

May he rest in peace.
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Old 07-09-2008, 07:57 AM #4
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I also see that this beautiful Soul that fought until the last moments of his life knew the pain and sufering of RSD and fought it to the end. He must have lost HOPE somewhere along the way.... Hope is the core of the fight in every human being. I will continue to fight this horrible monster and to spread awareness wherever I go In honor and memory of fighters like Scott and all who have lost and won their battle over RSD ! For in this continued fight none of their deaths will have been in vein. May he rest in peace knowing that others will pick up his cross and continue to carry it on for him and for all of us still battling the monster RSD...
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Old 07-09-2008, 08:34 AM #5
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Hi Kathy~ I do not suffer from RSD, but I have chronic pain daily from other disorders. I feel so sad that this man felt his only out was to end his life. It is so true in that, unless you feel their pain, you just can't grab onto how someone is hurting.

I can explain it a million times to someone and they still don't ''get it''. Thank you for bringing this to our attn. I just feel very numb when I read stories like this.

I have followed the RSD forum and I know from you all, that RSD is not a ride anyone wants to get on. Take care everyone.
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Old 07-09-2008, 11:43 PM #6
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Hi Kathy and thank you for sharing that article. This made me sad. My family did not know how much in pain I was until I told them over and over about this awful disease. I let them see, feel my hand when it was cold, blue, red. the swelling they seen too. I told them even if I have the swelling down that this pain is constant, on going bad, bone crushing pain! Now, they say, They don't understand or can feel this pain, but they feel bad and wish there was something they can do. Even if they did not understand, I would still have this, so I am what I am, hu? Anyway, this RSD does need to be out there! At least there is a name! Remember when Muscular dystrophy was unheard of? I believe this disease will be more and more heard of. We just need to get this out to many, many. It may not be in our time, or maybe it will, if each will do his/her part. They still have no cure for MS and look at all the money and research is going to Jerry's kids! I hope I am not bringing anyone down here, but all I mean is that there is hope out there! Before, docs used to think it was all in our heads and this was not too long ago, remember? I do! So, we all need to be heard, say, and do. Ok, off my soapbox. Much love~Desi
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Old 07-10-2008, 11:56 PM #7
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Originally Posted by DM View Post

I have followed the RSD forum and I know from you all, that RSD is not a ride anyone wants to get on. Take care everyone.

My doctor told me the other day that I was dealt a bad hand. It didn't occur me to groan since I was just feeling sorry for myself at the time.
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Old 07-11-2008, 09:45 PM #8
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Quote:
Originally Posted by Imahotep View Post
It's so hard for non-sufferers to understand.

Really I don't understand what's going on half the time myself. The most insignificant tasks become mountains to climb yet we often look nearly normal. An awful lot of the doctors don't understand either. There was one gastroenterologist who asked me my pain level when he was examing me for a severe case of diverticulitis and was surprised when I told him my pain level was down and only 2 or 3. He said most people with this condition report much higher pain levels. I told him that I was talking about my hand and the diverticulitis was hardly noticeable unless he pushed on my abdomen. He suddenly understood.

It seems that the problems in our lives are wrapped up closely with the disease. I'm not sure which feeds off the other or if our lives just degrade with our health. I think all any of us really want is some understanding and that's the great strenght of groups like this. We may not always understand what we ourselves are experiencing but it seems easier to empathize when others describe their problems.

Scott Terrill has found his peace but the worst part is that I can understand the agony which brought him to this. It's not only a huge price he paid in his final moments but it is society's loss as well.

May he rest in peace.
I am a non-sufferer but I love an causalgia sufferer. This disease scares the beejeebee's out of me. I once read that it is called the "suicide disease" because of the agony. I try my best to be supportive of my husband but don't always know what the right thing to do is. I read these posts, do lots of online research. I got him to agree to see a neurosurgeon next week but the other day he seemed to do an about face and started to tell me that he was not getting a spinal stimulator and has totally shut down. He won't read up on this disease and just tries to live his life as best he can. I seem to walk a fine line between trying to help him without being pushy because it is afterall his body and his pain. But it does affect our marriage and me in other ways. My mom died 6 weeks before my husband's surgery that caused the causalgia and then 6 months after that my sister was diagnosed with terminal lung cancer. She has since died. All of this has been a great emotional toll on me and I'm the only one working and carrying the family. It's hard on everyone. I know my pain is nothing like his physical pain and I truly support him 100% and never doubt his pain. This disease needs to be out in the public. People just don't know how physically, emotionally, financially, spiritually painful this disease is. It's a nightmare that never ends. I sincerely hope each and everyone of you become pain free.
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Old 07-11-2008, 11:23 PM #9
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Quote:
Originally Posted by Lisa I View Post
I am a non-sufferer but I love an causalgia sufferer. This disease scares the beejeebee's out of me. I once read that it is called the "suicide disease" because of the agony. I try my best to be supportive of my husband but don't always know what the right thing to do is. I read these posts, do lots of online research. I got him to agree to see a neurosurgeon next week but the other day he seemed to do an about face and started to tell me that he was not getting a spinal stimulator and has totally shut down. He won't read up on this disease and just tries to live his life as best he can. I seem to walk a fine line between trying to help him without being pushy because it is afterall his body and his pain. But it does affect our marriage and me in other ways. My mom died 6 weeks before my husband's surgery that caused the causalgia and then 6 months after that my sister was diagnosed with terminal lung cancer. She has since died. All of this has been a great emotional toll on me and I'm the only one working and carrying the family. It's hard on everyone. I know my pain is nothing like his physical pain and I truly support him 100% and never doubt his pain. This disease needs to be out in the public. People just don't know how physically, emotionally, financially, spiritually painful this disease is. It's a nightmare that never ends. I sincerely hope each and everyone of you become pain free.
Your husband is very lucky to have so much support and understanding.

I've found things much easier to deal with once I gave into it. I don't know if this will help or hurt anyone else but once accepting my old life is gone I've begun trying to build a new one. I still find joy it's just in different places and at a lower speed.
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Old 07-12-2008, 03:03 PM #10
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Originally Posted by Imahotep View Post
My doctor told me the other day that I was dealt a bad hand. It didn't occur me to groan since I was just feeling sorry for myself at the time.
At my last visit my doctor told me that I either have the worst luck, or bad genes .

I think it might be both. LOL

I too had to finally give into the fact that RSD was here to stay. I also find joy, but need to concentrate on enjoying those moments sometimes.
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