Posted 5/20/2013 9:25 PM (GMT -7)
Hi wifeofRSD and welcome to HW.
I am so sorry to hear of your husband's accident and resultant RSD. I have had CRPS/RSD for close to 14 years now and it is a horrible disease. I can't know what it's like to be in your position, but I imagine in some ways it is just as horrible to watch a loved one endure this.
I have low grade CRPS in my arms. It is much worse in my legs (mine started after a knee injury) and I have a stimulator implanted in my lower back that covers me roughly from waist to toe. We've a number of folks here with stims for a number of reasons, who I'm sure will comment too, but based on my own experiences -
The trial is super important. There are physical limitations as you probably already know. Your husband will not be allowed to stretch, lift heavy objects (the usual weight limitation is actually about 2-3kg), careful with neck/head movements as to cover the arm, the leads must be implanted very high up. But within those limitations, he needs to do as many normal daily activities and try to use his hand/arm as much as possible to get an idea of how much the stim is really going to help.
The percentage relief regarded as 'successful' seems to vary from dr to dr... when I my trial, my dr required around 70% pain reduction. I didn't have that overall - I get a deep, crushing pain that it's never even touched, and I still take a lot of meds (something else to be aware of) but it almost obliterated my extreme hypersensitivity to touch.
As far as medications go - you mentioned pain killers. Do you know if his doctors have used muscle relaxants? You mentioned his hand 'convulsing' - jerks and spasms are something that a lot of us with CRPS, sometimes they can be as painful as the nerve pain itself and a muscle relaxant can really help. If it's only one or two muscles causing the problem, he may be a candidate for Botox to help control it.
Did your husband's physiotherapist attempt any sort of desensitisation therapy with him? This is one of the crucial things - as is physio, or at least some sort of movement therapy in and of itself. I'm not sure where you are in the world, but you may be able to find a specialist hand physio who can help.
For desensitisation, I've used things like warm water, a bucket of birdseed (putting hand/foot into the seed and moving it around), soft cloths rubbed across my skin - then increasing pressure/texture as it's bearable. I'd also strongly recommend that you both have a look at a process called Graded Motor Imagery and another called Mirror Therapy.
I hope that helps somewhat. If you have any other questions, please feel free to ask them here or send me an email using the envelope link under my name.
Hang in there,
Moderator - Chronic Pain Forum
Full body CRPS, Dystonia, EDS, Dysautonomia (multiple issues) Osteoporosis, Fibromyalgia
SCS, Intrathecal Baclofen/Morphine pump, multiple oral meds - feel free to ask.