Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 He said the use of opoids in RSD is not useful and would not be prescribing them unless I get to an extreme state in my illness! He also ordered Physical Therapy and said it's the best defense against RSD. Now, I'm terrified that I'll have severe pain and nothing to help it. Have you all had the same experience and what do you think of this approach??? Thanks so much! Anita Hello Anita, That approach is the way my RSD is treated and I'm doing great. I don't take any narcotic pain medicine either. I do take medication. Aggrenox for blood circulation, Triavil an anti depressant for nerve pain, Buspar for anxiety and zanaflex for muscle spasms. Physical therapy has been good for me. I've had RSD for 10 years and physical therapy is part of the reason that I am doing so well. But there is a fine line with physical therapy. To much can cause problems as well as doing to little may cause some too. I have worked with 8 therapists over the years and each one worked with me and taught me how to move again. They got me to where I joined the hospital gym in 1996. I go two to three times a week and do the exercises that they and my doctor taught me. I've found that for me if I slack off my exercise, which are mostly stretches, one of my problem areas will flare up. This gym also has an indoor padded track that I walk around. I had done my PT with the therapists in this gym before they moved from the hospital. At first I couldn't make it around the track without stopping to rest many times. Now I do at least 6 laps around the track throughout my workout time. I do usually 3 laps for warm up then do my stretch routine and do some laps in between. So I know that for myself this has made me stronger and has helped me in my journey with RSD. I have more good days and I seem to bounce back faster when something flares up. I do my PT routine at home too and may do some stretching throughout the day. Also stretching is my pain medicine. When I start hurting I start stretching. It doesn't matter where I am If I have to stretch I do. I also use relaxation. A good soak in the tub also helps me. Talking to folks helps too. I run a support group and volunteer at my doctor's office by talking to other RSD patients. Now always remember that all RSDers are not a like. What works for one may not work for another. But this works for me and I'm happy with my treatment. I have improved and expect to keep improving. I wish you well too. Take care, Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Dear Anita, With RSD, some patients have had much sucess with physical therapy, myself included. I take a klonopin pill at bedtime, helps with the restless jerking that can and does occur in limbs that are affected. About the percocet..any time you take any meds for a long period of time, you find that a person becomes immune to the current dose and the dosage has to be increased. You may want to inquire with your doctor(old or new) about using a tens unit. The current impulses that is sends to your body can short circuit the pain impulse and be a great help in reducing pain. These are things that have worked for me, that doesn't mean that it will work for everyone. All options should be examined. Stay calm, find a doctor that you will be comfortable with and will remember that you are first and foremost a perosn. And always look to a higher power. I don't know if this has been any help, but thought it couldn't hurt. Good Luck and Peace of Mind be with You, Anne Lerch --- Anita wrote: > I just came back from my first visit at the Pain > Clinic and feel really > frustrated. The doc there put my on topamax > (replacing Neurontin), increased > my trazadone from 50 to 100 mg, added a clonipin > patch and a muscle relaxant > and told me to stop using my Percocet. He said the > use of opoids in RSD is > not useful and would not be prescribing them unless > I get to an extreme > state in my illness! He also ordered Physical > Therapy and said it's the best > defense against RSD. > > Now, I'm terrified that I'll have severe pain and > nothing to help it. Have > you all had the same experience and what do you > think of this approach??? > > Thanks so much! > > Anita > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Hi Anita, First I WOULD FIND A NEW DOCTOR! However It is true in a sense what he said. I can see your blood pressure rising from here! First let me explain. This is what I was told, it does not mean it is correct, just one pain clinics opinion, okay? Here goes The more medication that we take early on in this disease, the less we will have when we need them more. I mean, lets say for example your taking 10mgs of oxycontin and need to increase that within six months. That would mean by the time you were ten years into this disease there would be nothing left to alleviate your pain. I know it is hard, I myself find it difficult to try and take as little as possible, and that is a lot of medication believe me. I do wish I could have tried earlier on in this not to take it every time I should, but I didn't want to get into that pain cycle worse. It is so hard to explain what I mean. PLEASE I am not saying that your doctor is correct at all, in not giving you anything for the pain just in the early stages it is best to try and take as little as possible without getting into a pain cycle again. I do disagree with him that he told you not to take anything at all. and I would find a new doctor. I just hope I am coming across the way I mean to. As far as therapy is best to try and keep the rsd where it is or even lessen it. Just find a good doc and he will explain the drugs better than I am doing. At least he will give them to you. You should have pain medication for the awful pain rsd brings, just try not to raise the levels too soon. Hugs and a pain free minute, Deb Deborah Genatossio Debgena@... "Hope is a thing with feathers that perches in the soul and sings the tune without words and never stops at all " Dickinson PLEASE NOTE THE FOLLOWING WAIVER ______________________________________________________________________ No advise given by any member of this group is to be misconstrued as a reason to start, stop or add anything to your treatment plan including medications and procedures recommended by your physician. We are not responsible for any advise given and used in anyway against your doctors advise. Please check with all the people treating your condition before attempting to try anything new. Thanks. Deb, Jo and Felice listowners RSD-CRPS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Louise, What an inspiration you are. Thanks so much for sharing your story. Hugs, Anita -----Original Message-----From: SCRSDA1@... Sent: Monday, October 01, 2001 9:31 PMTo: RSD-CRPS Subject: Re: RSD & Opoids He said the use of opoids in RSD is not useful and would not be prescribing them unless I get to an extreme state in my illness! He also ordered Physical Therapy and said it's the best defense against RSD. Now, I'm terrified that I'll have severe pain and nothing to help it. Have you all had the same experience and what do you think of this approach??? Thanks so much! Anita Hello Anita, That approach is the way my RSD is treated and I'm doing great. I don't take any narcotic pain medicine either. I do take medication. Aggrenox for blood circulation, Triavil an anti depressant for nerve pain, Buspar for anxiety and zanaflex for muscle spasms. Physical therapy has been good for me. I've had RSD for 10 years and physical therapy is part of the reason that I am doing so well. But there is a fine line with physical therapy. To much can cause problems as well as doing to little may cause some too. I have worked with 8 therapists over the years and each one worked with me and taught me how to move again. They got me to where I joined the hospital gym in 1996. I go two to three times a week and do the exercises that they and my doctor taught me. I've found that for me if I slack off my exercise, which are mostly stretches, one of my problem areas will flare up. This gym also has an indoor padded track that I walk around. I had done my PT with the therapists in this gym before they moved from the hospital. At first I couldn't make it around the track without stopping to rest many times. Now I do at least 6 laps around the track throughout my workout time. I do usually 3 laps for warm up then do my stretch routine and! do some laps in between. So I know that for myself this has made me stronger and has helped me in my journey with RSD. I have more good days and I seem to bounce back faster when something flares up. I do my PT routine at home too and may do some stretching throughout the day. Also stretching is my pain medicine. When I start hurting I start stretching. It doesn't matter where I am If I have to stretch I do. I also use relaxation. A good soak in the tub also helps me. Talking to folks helps too. I run a support group and volunteer at my doctor's office by talking to other RSD patients. Now always remember that all RSDers are not a like. What works for one may not work for another. But this works for me and I'm happy with my treatment. I have improved and expect to keep improving. I wish you well too. Take care, Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Deb, Let me first thank you for your input. I'd never be upset with someone who is giving me their honest opinion and/or experience. It seems to me that a balance needs to be found between making pain meds available when absolutely necessary and not making them available at all. There were other things about this doctor I didn't like, as I've written about in another e-mail. I think for me, this doc isn't going to work and, as you said, it's time to find a new one. Hugs, Anita -----Original Message-----From: debgena@... Sent: Monday, October 01, 2001 11:31 PMTo: RSD-CRPS Subject: Re: RSD & OpoidsHi Anita, First I WOULD FIND A NEW DOCTOR! However It is true in a sense what he said. I can see your blood pressure rising from here! First let me explain. This is what I was told, it does not mean it is correct, just one pain clinics opinion, okay? Here goes The more medication that we take early on in this disease, the less we will have when we need them more. I mean, lets say for example your taking 10mgs of oxycontin and need to increase that within six months. That would mean by the time you were ten years into this disease there would be nothing left to alleviate your pain. I know it is hard, I myself find it difficult to try and take as little as possible, and that is a lot of medication believe me. I do wish I could have tried earlier on in this not to take it every time I should, but I didn't want to get into that pain cycle worse. It is so hard to explain what I mean. PLEASE I am not saying that your doctor is correct at all, in not giving you anything for the pain just in the early stages it is best to try and take as little as possible without getting into a pain cycle again. I do disagree with him that he told you not to take anything at all. and I would find a new doctor. I just hope I am coming across the way I mean to. As far as therapy is best to try and keep the rsd where it is or even lessen it. Just find a good doc and he will explain the drugs better than I am doing. At least he will give them to you. You should have pain medication for the awful pain rsd brings, just try not to raise the levels too soon. Hugs and a pain free minute, Deb Deborah Genatossio Debgena@... "Hope is a thing with feathers that perches in the soul and sings the tune without words and never stops at all " Dickinson PLEASE NOTE THE FOLLOWING WAIVER ______________________________________________________________________ No advise given by any member of this group is to be misconstrued as a reason to start, stop or add anything to your treatment plan including medications and procedures recommended by your physician. We are not responsible for any advise given and used in anyway against your doctors advise. Please check with all the people treating your condition before attempting to try anything new. Thanks. Deb, Jo and Felice listowners RSD-CRPS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Anne, Thanks so much for your encouragement. I've got a long way to go on this RSD road, so I want to be sure to have a doctor that I feel comfortable with. Hugs, Anita Re: RSD & Opoids Dear Anita, With RSD, some patients have had much sucess with physical therapy, myself included. I take a klonopin pill at bedtime, helps with the restless jerking that can and does occur in limbs that are affected. About the percocet..any time you take any meds for a long period of time, you find that a person becomes immune to the current dose and the dosage has to be increased. You may want to inquire with your doctor(old or new) about using a tens unit. The current impulses that is sends to your body can short circuit the pain impulse and be a great help in reducing pain. These are things that have worked for me, that doesn't mean that it will work for everyone. All options should be examined. Stay calm, find a doctor that you will be comfortable with and will remember that you are first and foremost a perosn. And always look to a higher power. I don't know if this has been any help, but thought it couldn't hurt. Good Luck and Peace of Mind be with You, Anne Lerch --- Anita wrote: > I just came back from my first visit at the Pain > Clinic and feel really > frustrated. The doc there put my on topamax > (replacing Neurontin), increased > my trazadone from 50 to 100 mg, added a clonipin > patch and a muscle relaxant > and told me to stop using my Percocet. He said the > use of opoids in RSD is > not useful and would not be prescribing them unless > I get to an extreme > state in my illness! He also ordered Physical > Therapy and said it's the best > defense against RSD. > > Now, I'm terrified that I'll have severe pain and > nothing to help it. Have > you all had the same experience and what do you > think of this approach??? > > Thanks so much! > > Anita > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Well, I'm now 24 hours into reducing my Percocet use. Sunday, I had eight pills, yesterday I had four, and today thus far I've have two. I can't believe I'm saying this, but so far there's not much difference in my RSD pain. Tomorrow, I'll reduce even further and get off the Percocets altogether soon. I'm also switching from the Neurontin to Topamax, so hopefully that'll work out ok. I can't tell you all how much I appreciate you. Thanks so much for your loving support. Hugs, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2001 Report Share Posted October 3, 2001 Hi Anita, Good for you, just remember don't suffer needlessly, if you can handle it fine, but that is what they are there for. Good job! Hugs and a pain free minute, Deb Deborah Genatossio Debgena@... "Hope is a thing with feathers that perches in the soul and sings the tune without words and never stops at all " Dickinson PLEASE NOTE THE FOLLOWING WAIVER ______________________________________________________________________ No advise given by any member of this group is to be misconstrued as a reason to start, stop or add anything to your treatment plan including medications and procedures recommended by your physician. We are not responsible for any advise given and used in anyway against your doctors advise. Please check with all the people treating your condition before attempting to try anything new. Thanks. Deb, Jo and Felice listowners RSD-CRPS Quote Link to comment Share on other sites More sharing options...
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