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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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#1 | ||
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Well I wanted to share my opinion. I could not survive without them
My pain is just too severve. However. I do believe that the breakthrogh meds do cause a flare up every 4- 6 hours. I do believe they can cause wind up. Actually increase pain for a period each day. several tiems a day actually. Having said that my pain with out them is so severe i have no choice but to endure it. Dr. Schwartzman does not support the use of high doses as it interfers with the bodys ability to recieve the benifts of ketamine therapy. I believe i am quoting him correctly. I do know that is true. Having had exensive ketamne therapy I know it lowers my pain threshhold considerably and therefor the need for such high doses of morphine and oxycontin for breakthough. actually right now I just switched i am on opana er and opana immediate release. so far the opana ir is just giving me horrible migranes and very litlte pain relief but i am only on the second day.I really want to get back to philly for more ketamine infusions but money is now a problem. I had infusions for 5 years. and the coma. I wish i had never stopped. If anyone else is taking the immediate release opana would you please let me know if it is helping, Mine is 10mg dx every 4-6 hours up to 5 per day. I have not taken over 3 due to migraine. thank you so much cz |
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#2 | ||
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Just a warning in regards to the Opana and the whole line of morphine based medications. I could not take it because it gave me such a dry mouth which caused problems with my teeth very, very quickly I had to go off. I tried both the opana and the avinza. My RSD is upper extremety so I used to be prone to getting migraines and at that time I was getting them more then I am now. Now I only get one very infrequently. If you start to get a dry mouth and you'll notice it it's very drastic, call your dentist. My dentist gave me another pill to bring the saliva to the mouth but I just didn't want to do it all. The name of the medication I don't remember but it started with an "R". Good Luck, Gabbycakes |
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"Thanks for this!" says: | CZZ74 (02-19-2011) |
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If I continue to get migraines like the one i have had since one am this morning, I will be going off it very quickly. I was unable to get oxycondone due tio the abuse in Broward county by the pill doctors. That is why i had to switch. thank you so mcuh for your input. sincerely cz |
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"Thanks for this!" says: | gabbycakes (02-20-2011) |
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Junior Member
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(Quick bio: RSD left foot, spread up leg, post-surgery). Anyway, I also "played" with different combos of pain meds, meaning: various meds of both types of opiates (instant and extended-release), and the typical assorted "off-label" meds (like gabapentin/Neurontin, etc.), all with my doc, of course, before getting the right "cocktail" as I put it- figured out. As far as specific opiates, my doc has tried nearly all (oddly enough though, not opana) with me. We tried hydrocodone (Vicodin), oxycodone (Percocet), all short-acting. However, I also get migraines, and the oxycodone triggered them in me too. As far as long-acting, we tried Ryzolt ER which is tramadol- a "weak opioid" or "opioid-like" drug- along with one of the aforementioned drugs for breakthrough. Along with gabapentin and topamax, that was my original setup...but it did next to nothing, the pain just kept getting worse. After finding a different doc, who has REAL and extensive experience with RSD patients, I was finally on the right track. The first thing he did was switch my meds (with instructions on tapering off old meds, etc). We discussed options and settled on taking me off everything I was on at the time, except increased my gabapentin (which I'm currently tapering off of now, but I digress), and then added amitriptyline, and hydromorphone (Dilaudid). Now, idk if it's due to coming off of the old meds, or the side effects of the new ones, or just the rsd getting worse, but I admit, I felt terrible for a few days during the initial transition. However, now that it's been about a month and a half of the new mix I'm extremely happy with the results (comparatively, anyway). I'm by no means pain-free, but I'm way better off than when I started. I hate being on so many drugs, but they allow me to think straight, get out of bed, do short errands, and now even start physical therapy- none of which I could even imagine doing. The side effects, although constrictive, i.e. can't drink (bummer for being 23, soon to be 24), or drive while this is all going on (and I live on my own- so my apt has started to feel like a cage), they do have their upside...My dad just retired this year, and so the timing was great- he's able to cart me around whenever I need him (nearly everyday), and although I hate to burden him, it's allowed us to become so much closer than we were (or would have ever been I presume), since we spend so much time together now. I've found that the key to staying sane through all this is to find the silver lining anywhere I can- and since the "drug" aspect of rsd is so full of frustrations, there are many silver linings to be found! Sorry for rambling- best of luck to you! ![]() |
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