Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Bonnie, Hope all went well at the pain clinic and that you got some much needed answers. Hugs, Tracey --- wrote: > Well I am off to the pain clinic to day....little > nervous but looking > forward to some answers and hopefully more relief > Wish me luck > > Bonnie > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Bonnie, Hope all went well at the pain clinic and that you got some much needed answers. Hugs, Tracey --- wrote: > Well I am off to the pain clinic to day....little > nervous but looking > forward to some answers and hopefully more relief > Wish me luck > > Bonnie > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Hi Bonnie, Hoe did it go at the pain clinic? Let me know please:} Hugs and a pain free minute, Deb Genatossio Debgena@... Listowners Deb & JO RSD-CRPSegroups Deborah Genatossio Mass. Charter Director American Society forRSD/CRPS(ASRSD/CRPS)online support groupASRSD_CRPSegroups Visit our website @ www.American SocietyforRSD-CRPS.org HOTLINE /files/ASRSD_CRPS/Bylaws+and+handbook/ASRSDCRPSHANDBOOK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Hi Bonnie, Hoe did it go at the pain clinic? Let me know please:} Hugs and a pain free minute, Deb Genatossio Debgena@... Listowners Deb & JO RSD-CRPSegroups Deborah Genatossio Mass. Charter Director American Society forRSD/CRPS(ASRSD/CRPS)online support groupASRSD_CRPSegroups Visit our website @ www.American SocietyforRSD-CRPS.org HOTLINE /files/ASRSD_CRPS/Bylaws+and+handbook/ASRSDCRPSHANDBOOK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Hi Bonnie, I know RSD is a horrible, horrible disease, but at least now you know definetely what that you have it and start looking to the future and know (kind of) what to expect. I say kind of because it is impossible to predict what will happen with RSD. Everyone is different, but we all share the basics, like the worst pain you could ever imagine existed, the burning, spreading aching, and debilitating pain we all must endure. It sounds like you have a great doctor now, stick with him. He sounds very compassionate and caring. Your internist sounds like an idiot, not remembering your GI problems. Time to find a new one!!!! Maybe the RSD doctor could recommend someone. Well I hope you are doing better on the new meds, and remember we are all here for you. Love Jai Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Hi Bonnie, I know RSD is a horrible, horrible disease, but at least now you know definetely what that you have it and start looking to the future and know (kind of) what to expect. I say kind of because it is impossible to predict what will happen with RSD. Everyone is different, but we all share the basics, like the worst pain you could ever imagine existed, the burning, spreading aching, and debilitating pain we all must endure. It sounds like you have a great doctor now, stick with him. He sounds very compassionate and caring. Your internist sounds like an idiot, not remembering your GI problems. Time to find a new one!!!! Maybe the RSD doctor could recommend someone. Well I hope you are doing better on the new meds, and remember we are all here for you. Love Jai Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Dear Bonnie,... Hi, I'm Jackie.. I was dx in April with RSD, I have had a series of back surgeries over the last 5 years, but a breast biospsy brought it out , I guess. nobody ever knows exactly what's what with this. Just a suggestion from being exposed to elavil. It makes you gain weight. I put on 20 pounds from it, but I've heard of others. If he is giving it to you for pain or sleep? If it is for nerve pain, Neurontin is a better choice and if it is for sleep Ambien is great for sleep. Elavil, you can't wake up from it, it really knocks you out and in the morning it is hard to wake up from it too. I had a ice cold, purple , or red hot burning slightly swollen feet, and deep pain in my thighs. Now after 7 months I am starting with the sensitvity in my legs to material. Having a tough time dealing with the whole the idea of RSD. Oh, also since I am a wreck over the whole deal, I am on klonopin to calm me down and it also helps with the pain. , but elavil............yucck..... Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Bonnie & Jackie, I was on elavil for a few years. I didn't gain weight but it didn't help much either. I am now taking ambien and it is so much better for sleep. I still don't sleep through the night but at least I get a few hours of straight sleep. Hugs, Tracey --- jcutler114@... wrote: > Dear Bonnie,... > > Hi, I'm Jackie.. I was dx in April with RSD, I have > had a series of back > surgeries over the last 5 years, but a breast > biospsy brought it out , I > guess. nobody ever knows exactly what's what with > this. > > Just a suggestion from being exposed to elavil. It > makes you gain weight. I > put on 20 pounds from it, but I've heard of others. > If he is giving it to > you for pain or sleep? If it is for nerve pain, > Neurontin is a better choice > and if it is for sleep Ambien is great for sleep. > Elavil, you can't wake up > from it, it really knocks you out and in the morning > it is hard to wake up > from it too. > > I had a ice cold, purple , or red hot burning > slightly swollen feet, and deep > pain in my thighs. Now after 7 months I am starting > with the sensitvity in > my legs to material. Having a tough time dealing > with the whole the idea of > RSD. Oh, also since I am a wreck over the whole > deal, I am on klonopin to > calm me down and it also helps with the pain. , but > > elavil............yucck..... > > Jackie > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Bonnie, I'm so glad to hear your doctor's visit went so well. The doctor sounds very nice and it's so good you feel comfortable with him. Remember to always ask questions no matter how foolish you think they may be...all questions are important. I, too, have tummy problems so I have to be careful with my meds. I've tried so many cause the majority of them upset my system. If one bothers you be sure to tell the doctor. Have you ever had a block before? I've had about 30 or so. Maybe he can get your RSD under control. After my first series of blocks I did go into a " remission " stage. Unfortunately, in my case, the RSD didn't stay in that state for all that long. But hopefully in your case it will be better. I pray it helps you. Be glad you have a doctor who believes in what you're saying. I go see my new pain dr. for the first time this Tuesday. I'm so used to my old one who was with me for about 2 1/2 years...so this will be different for me. Hugs, Tracey --- wrote: > Hello All, > > Well Yesterday went better than I had suspected. My > biggest fear was hearing from a Doctor that > specializes in RDS that yes I have it. There was a > big of me that was hoping it was something else and > that my family Dr made a mistake. Its not like she > didn't make a bunch before that. > > Well to begin with I do have RSD and that I cant > deny anymore. It started off in my ankle and is > already spread to my knee. The burning is getting > worse and I sometimes think if I had to choose > between the pain or the burning I would take the > pain. > > Dr Faclier at Sunny Brook Medical Hospital has to be > one of the nicest people I have ever met At no > point during the hour and a half I was with him did > he ever make me feel uncomfortable, he never > questioned my pain and he made me feel like he > really cared. It was such a relief as I was worried > and scared he might think I was making it up. The > swollen, freezing cold, and discolored foot was not > something one could deny. He was gentle, caring and > explain things so I could understand them. He > answered every question I had in terms I could > understand, > and if I didn't and asked again he had the patients > to explain it again. > > He looked at my bone scan and was confused with the > results. The report stated that in 15% of RSD > patients, the results sometimes show up backwards. > Where the flow should be increased it showed a > decreased. He said there must be something wrong in > the report, and call the hospital where the bone > scan had been done. They mark the left foot as the > right and the right as the left. He was not > impressed and made sure he told them what he > thought. > > I also had to have an upper GI done last week as my > Family Dr couldn't remember that I had an ulcer. She > did the test a few years ago. Turns out that I still > have one..boy was I surprised..anyways the cellebrex > doesn't cause ulcers but can inflame and cause > existing ones to bleed....He was very upset that my > Dr would prescribe this drug without checking my > history..he changed those meds to Vioxx. He has keep > me on the oxycodone and also added Elavil. > > I begin a series of nerve blocks beginning in two > weeks, and he makes me feel like he cares and this > in return makes me feel safe and trusting. It sure > does feel good to be able to trust a Dr. > > ok who is sleeping??????? I wont ramble anymore just > wanted to let everyone know that I have found > someone that wants to help. > > Warmest Wishes > Bonnie > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Hi Bonnie, Sooo glad to hear that the pain clinic visit was such a success! It's wonderful that you've found a Dr. who is caring, and apparently knows how to treat you. The Elavil should help the burning some, if it doesn't consider asking for clonodine. As for the blocks, I had several until I decided that the difficulty involved in getting them wasn't worth the very brief respite from pain I experienced. But, I think that you've not had this as long as I did when I started my blocks, so it may be much more helpful to you. I hope so. And, not being able to deny any more does give you the opportunity to get aggressive with this now. Hugs, Jo Quote Link to comment Share on other sites More sharing options...
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