For me a diagnosis of complex regional pain syndrome (CRPS) was relieving in the sense of knowing what was going on, but also disappointing in knowing that there is no cure and many treatments are trial-and-error as far as effectiveness goes.
Lately I’ve been getting weekly IV infusions of 350mg lidocaine for my CRPS. So far this has been the only treatment option that has made any noticeable headway in managing my nerve pain from this horrible disease. Prior to agreeing to this option I did a lot of research and was discouraged by the voices out there that had negative results. I had to remind myself that every person’s body is different. Just because one blogger says lidocaine didn’t work for them doesn’t mean it won’t work for me.
My infusion adventures started with every other week lidocaine infusions. These did not provide more than four or so days of pain relief. (By pain relief I mean having the pain be tolerable to function, not gone.) Thankfully my doctor switched me to every week infusions. Friday, when I get my infusions, has become my favorite day of the week.
While I am hooked up to my IV, I do experience symptoms that I feel are worth the price of pain relief. For one my tongue feels hairy (awkward, right?). I’m a little unstable on my feet, dizzy, loopy, and tend to slur some of my words. It’s as if I’ve had one too many drinks. Like the last day of college all over again minus the vodka. I can also feel nauseous if the IV drip is set too fast. For me, 75 minutes works or 60 minutes if I am sipping on sprite. The symptoms I experience lessen during my 0.9% sodium chloride (saline) flush which ranges from 5 to 15 minutes after the lidocaine ends.
For the time I am hooked up my pain level is a 0/10! It’s a Godsend! The pain relief after the infusion has laster longer and longer each sub-sequential time to the point were I can be at a 2/10 most of the days of the week (minus mini-flares of break through pain).
I like to stay occupied during my infusions by either writing (hey guys!), clipping coupons, or resting while I listen to music. Distraction is one of my main pain management techniques to cope with the pain the comes with CRPS.
As a scientist myself I have been reading clinical studies about CRPS treatment. Ketamine infusions have caught my eye. I have been reading about the effectiveness and am encouraged to hear that an infusion over a several day period can put CRPS in “remission”. Has anyone out there had success with ketamine? My doctor and hospital do not provide this infusion option at this time. And the only places I have found require cash payment for treatment, which is upwards of $2,000 per infusion. YIKES!