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DiscussionWhat Type of Doctor Diagnoses CRPS/Resource re: Treatment
Chronic Pain | Last Active: 6 hours ago | Replies (24)Comment receiving replies
Replies to "@rivermaya34 Thank you for your quick answer. Reading your profile made me realize that you have..."
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@songfamily2025 Absolutely! I'm so glad to hear you are under good care. I admire you for being able to function on narcotics - those drugs are good, but they put me to sleep. I only use those for post-surgeries. It's really hard to say exactly how long I've had CRPS, but I can 100% confirm and track it back to 2019. However, my hunch is that it started several years earlier (around 2012) and was exacerbated after a traumatic surgery that involved complications (it's a long story). Right now, I'm taking Gaba / Keppra 750 ER / Zofran - that usually keeps it at bay - but, I've also got a spinal cord stimulator (for upper body) that's been a godsend since day one. Currently, this is the third time of tapering down off Gaba because I want to get to 0mg so I can trial a second stimulator (for lower body) and hopefully pursue a permanent one(s). End goal is to get off all meds (or most - for sure, Gaba) and rely on stims mainly. I'm very sensitive to touch, though, and I get very nauseous also with CRPS, so it just depends on the day how I handle it - sometimes, I use compression sleeves (tubigrip is the best, in my opinion) and KT tape; but, if I am unable to tolerate any air movement or touch, then heat always helps or I just wear tank tops and try to medicate so I can sleep it off. If a flare is really bad (typically, 5 days for me), then I just have to grit my teeth through it. Keeping my mind preoccupied is key for me, as simple as that sounds. In my younger days, being active was great, but now I am unable to do much physical activity. Of all the meds I've tried, I'd say that Gaba/Keppra ER have been the best combo for taking and keeping the edge off. I did like Lamotrigine (regular, not ER), but I got the allergic rash so I had to stop. Keppra is closest thing comparable for me. I have not tried Ketamine yet, but I will soon be doing infusions for my migraines, so I don't want to shake everything up at once. My next move (down the road) is to work with an adhesion specialist because I believe that might be key in alleviating a lot of pain. But, I'm very very very sensitive to touch, so that makes me nauseous even thinking about it. I'm curious to hear more about your journey also, and if you've already posted that somewhere, I'd love to read it so you don't have to retype. Thanks for any info - super helpful!!