Dear Vanessa -
Hi. I'm very sorry to hear that you have "classic RSD." Although there is the old expression about if you have to have something, you may as well do it right.
It sounds like you're really taking PT quite seriously, which is great.
The good news in people your age is that they tend to respond to therapies very well, in particular, it is my understanding the in-hospital ketamine treatments have shown very good results with teenagers. For more information, I would urge you to look at the "plain language article" entitled "Overview of Ketamine Infusion Therapy," by Philip Getson, DO, that appears at top of the RSDSA Medical Treatment page, and which you can click on here: http://www.rsds.org/3/treatment/index.html
I would encourage you to discuss this article with your parents and your pain management doctor.
However, short of ketamine therapies, I can say something about cramping and spasms, where they have been a major part of my RSD/CRSP experience for the last five years. So far, I have found that what works best are meds specificically designed for Central Nervous System (CNS) induced cramping. So, in addition to the pain medications (ocycodone/Oxycontin
, a medication I take for shooting/stabbing pain - Xanax
- and another to hopefully prevent gray matter atrophy secondary to chronic pain (Namenda
) there are three drugs I take specifically for cramping/spasms:
(4 mg. 6/day)
(10 mg.) [½ to 1 tablet as needed for severe muscle spasms]
(5 grains at night)*
Now, the Zanaflex takes some getting used to, as it made me pretty sleepy when I first started taking it, at a much lower dose. And I've been on Quinine for so long, that I don't know if it's doing any good or not. The stuff is one of the oldest medicines out there and is pretty harmless by all appearances. But Baclofen is really the star of the show. Unfortunately, I'm unusually sensitive to it and it sort of screws up my short term memory, so it's not my principle anti-spasmatic; for other folks, it's the drug of choice. That said, when I woke up the other morning with horrible neck pain (my RSD is typically in my legs and feet) I got up to take something, and it felt like someone was threading a copper wire through my cervical spine! Fortunately, the Neurontin, Baclofen and Zanaflex were right there. I took them and went back to bed and was fine thereafter.
I would encourage you to discuss these drugs with your pain managment doctor as well. However, they are obviously nothing to plan a young life around. Which is why I brought up the issue of in-patient ketamine infusions.
Good luck. As you must know by now, we're all here for your support.
I'm also given Marinol - synthetic THC/marijuana - for cramping, but I doubt very much that any pain management doctor in the country would make that one available to a high school student. Sad to say, there's a lot a prejudice against young people when it comes to handing out truly effective analgesics and the like.