Spinal Cord Stimulator - Severe CRPS Flare

@ekennedy95 Greetings and welcome to the stimulator club! I hope it will bring you the relief you are seeking. I've been where you are and I have widespread CRPS also; it is not for the faint of heart. I've also been really fortunate to get off most of my meds and (for the third time - for personal reasons) am trying to finally get off of Gaba for good. My goal is to have dual stims and little to no meds. Right now, Keppra 750mg ER + Gaba + Zofran 8mg + SCS gives me enough relief, although, whenever a flare hits, nothing seems to help. It's just a waiting game. Fortunately, tho, my pain is much less than it used to be. But, because of a traumatic surgery I once had due to a previous complication, CRPS came into the mix and it hasn't been pretty since. I've learned to get creative and adapt somewhat, but I literally feel your pain with the allodynia struggles. Best I can say is if you are in a really bad flare and those areas are really sensitive, try to find clothing that doesn't bother you. For me, I have to wear loose clothing there, but either fitted long sleeves or no sleeves at all for my arms. Just depends on the nature of the flare. Also, heat seems to really help soothe it. And, nausea meds help when nothing else does; my last act of desperation is to medicate so I can fall asleep and not feel it. Otherwise, keep your mind busy and focused on something else as best you can (I know, much easier said than done). Also, may I give you a bit of encouragement - you are very early in your stim journey (from reading your post - pls correct me if I'm wrong) and things can definitely change. Keep in mind your BS rep can change the settings and put new programs on there for you to try. I keep at least 4 on mine that I can rotate thru if need be, but I happened to find one that keeps me pretty suited 99% of the time. If there are any other questions me or anyone else can answer or give you suggestions for, please don't hesitate to keep posting. My heart goes out to you...seriously. You're a trooper and I'm inspired by your courage! Stay strong! 🙂

@rivermaya34 hi! Thank you for the reply! It’s very insightful.

Quick question- what do you mean by dual stim?

@ekennedy95 A second unit (scs) possibly combined into a "dual" unit. It's to target my lower body also. When I talked to BS about it, they said depending on the person's needs and how they respond during the second trial will factor into what kind of unit they go with. They can either place a whole second unit away from the first one, or replace the first unit with a little bit bigger one that holds enough leads to target upper and lower body both. But I wont know until I do it - I've been delayed because of failing to get off Gaba completely. I could do it anytime, but I'd prefer to test it out starting at ground zero rather than having meds on board, if that makes sense. Sorry if that was a bit confusing.