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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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01-25-2017, 11:32 AM | #11 | ||
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Thank you! That is really good information for me. I've been asking a lot of questions of my doctor and getting info here plus researching medical/ pain science researchers to get a lot of ideas and opinions. For now the program I'm using is working, but I like to have something thought out in the wings in case I need it! I'm glad for you that you've found something that works for you! Best, Hotfoot |
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01-26-2017, 11:30 AM | #12 | |||
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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01-26-2017, 07:39 PM | #13 | ||
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Gralise has been available for about 3 yrs, it's only brand, no generic, and you take it once daily- which can be really convenient for people. You take it at night with dinner. It's not one for one with milligrams of gabapentin, and you can't take your regular gaba pills with it, but it is gabapentin. The pill or pills of gralise actually expand from gastric secretions and stay in your stomach for the 24hrs. The starter pack starts at 300mg and increases to a max of 1800 mg. I hope this makes sense~ Hotfoot |
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01-27-2017, 12:34 PM | #14 | ||
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Yes, gathering this information ahead of time is a really wise thing to do. I do get concerned that eventually I may need a different approach and I have been pleased with my latest doctor's knowledge regarding different meds and approaches. I do appreciate this site because people share what is working for them. Your input and input from people like Littlepaw who shared the latest info on clinical trials is so important. The more we know now the better we will be prepared to make new decisions if the need occurs. Thanks for your and all of the members' input on this site. Shay |
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01-27-2017, 08:18 PM | #15 | ||
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I agree having alternatives researched ahead of time or just familiarizing myself with options does make me feel more in control and more prepared for whatever changes. I was talking with someone I trust about RSD being without a cure and they named off diabetes, blood pressure, heart disease etc which also have no cure. It helped me gain some perspective after a difficult week. Little paw mentioning research studies was great because I printed studies out for the foot doctors staff this summer, but never considered it for myself! 😊 For anyone reading this thread: I did want to add about the gralise that the part I had the biggest problem with was that because it is time release I wouldn't know when I could get relief, couldn't plan when I'd be safe to drive or modify the dose if I was in less pain and didn't want as much in my system. So it felt like a roller coaster ride. Also, the change from 2700mg gaba to 300mg gralise (going up to I think 900 by the fourth day and staying at that for 4 days) left me really under medicated and the side effects from the rapid decrease were uncomfortable. I'd recommend a slower reduction of gaba if on a high dose and I did speed up the gralise faster than the starter pack which was very helpful. And that's all from me now, thanks for reading a long post. |
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01-28-2017, 03:34 PM | #16 | |||
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Hi Hotfoot,
A word on the ketamine protocols...if you get in a bind and need something added to your routine, weekly ketamine may actually be able to help. The majority of studies are done on the 10 day treatment but there are other methods. My PM now only administers ketamine once a week at his clinic and that seems to be working for many of his patients. For me, it was the build up over time of weekly then bi-weekly, then every 3 weeks, etc that helped break my pain cycle. Now, like Shay, I only go every 3 months for a one session booster. This has been keeping things pretty under control and going once a week was a lot easier on me in the beginning both physically and financially. My cost per session is in keeping with Shay's as well. My infusions run $300.
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Littlepaw Shine Your Bright Light |
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01-28-2017, 08:02 PM | #17 | ||
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hoping I'll never get there. These posts have been really helpful in doing that. Thank you so much for sharing!😊 New question for anyone who feels like jumping in: I'm trying to get back to my old job (before CRPS). Has anyone gone back to the same job successfully full time? Thank you all! Hotfoot53 |
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01-29-2017, 09:02 AM | #18 | ||
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I just met a woman during my last infusion who travels a long distance to get her infusions. She said that her boosters had been reduced to every 6 months and she was doing well, but when they went to every year, she started to have difficulties again. It really is a balancing act for each individual. She also mentioned that not every state will allow the two week protocol or an inpatient protocol. (I don't know how accurate this is.) She decided to travel the long distance to continue her ketamine infusions where they were first started since her results were so good. Littlepaw, knowing that the protocol you are on has helped many others should be encouraging for those who are still seeking a treatment that may help them. Shay |
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01-29-2017, 09:22 AM | #19 | ||
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I was already retired when CRPS developed. However, I can say that I could have probably returned to work with some modifications that would be possible. I would have needed more time off than before the CRPS and I don't think it would have been easy. It would really depend on the type of job and how well the pain is being managed. If a person is on a lot of meds with side effects that prevent them from driving or operating machinery or that prevent them from concentrating, that would certainly be a deterrent. There are people who go into remission and I hope you hear from them. (I also hope that you become one of them.) Good luck with your quest to return to work. Remember that there is always hope! Shay |
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"Thanks for this!" says: | RSD ME (01-29-2017) |
01-29-2017, 08:10 PM | #20 | ||
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I have trouble focusing on tasks in order and it's especially obvious to me when I post here. It's likely the gabapentin and uncertainty of things now. I'll post it. Thanks for the positive response-I will do something- idk what yet...Hotfoot 👣 |
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