For 3 days and 2 nights this week, I’m away from home for a business trip. Because of a rare disease, anytime I travel I have to pack some extra items. I don’t need a wheelchair, or crutches, but I have to bring some odd-looking equipment with me!
My disease is Complex Regional Pain Syndrome, which is sometimes still called Reflex Sympathetic Dystrophy; its old name. Most folks, including doctors, use the acronyms CRPS or RSD. Many still prefer the old name, because the disease is a form of dystrophy.
For a short explanation of CRPS, read my own definition of CRPS. For more detail, there was a CRPS news update last year. This condition usually affects the limbs, so an arm & hand or a foot & leg – or both. For me, it’s the right hand & arm – to just above my wrist.
CRPS is called a neuro-inflammatory disease, but it can cause lots of other problems. Progressive joint damage or malformation, stiffness (or rigidity), loss of range of motion, and lower bone density are some examples.
It also causes horrific, constant, pain. Rated as more painful than kidney stones – or even childbirth. But this pain stays there all the time, and often permanently…
So what are the odd-looking extra items I had to bring with me, to be away from home for a few days?
First is my dynamic splint, which looks kind of like a superhero’s (or villain’s?!) hand “attachment”. I wear this for a several hours each day, to try to prevent or delay more joint damage from CRPS.
It’s a custom-made type of brace that uses elastic bands to pull (exert force) on each of my 4 fingers at the same time. So it pulls each of the fingers into an extended (or open) position.
I put each fingertip into one of the 4 little slings, even though the tips of my fingers usually feel like they’re on fire. My forearm goes into the top part of the dynamic splint. The little spring – that looks like coiled wire – pulls my wrist up.
The splint comes apart just above the solid metal bar, so I set up the bottom part on my hand and then put the top part over my wrist & lower arm. And then I attach the 2 parts, with my left hand.
That constant pulling, for many hours each day, is meant to help prevent the bones & joints in my and – and wrist – from forming into a claw shape.
That’s one of the things this disease wants to do, and then to keep the hand & wrist stuck in that position. Once that happens, you lose the use of your hand because the bones start to fuse. The bones inside each joint start to grow into each other, so they end up not being able to move at all.
Second is my portable TENS machine. That’s a Transcutaneous Electrical Nerve Stimulation device. It’s used to try to relieve neuropathic (nerve) pain.
The idea is to kind of shock the nerves with electrodes, that are placed at specific points on the skin of the arm. These electrodes send electrical currents into the nerves, and muscles.
Each patient can adjust the strength of the current to whatever level works best for them. And to the level that’s best for their disease or condition. That’s a decision to be made with a doctor, physiotherapist, or other member of a treatment team – not by yourself.
The idea is that these electrical currents or impulses can trick the brain. To confuse it into misinterpreting some of the pain signals from the nerves, so that the brain ‘feels’ less pain.
Sometimes it helps, sometimes it doesn’t. But it only rarely makes the pain worse, so it’s often recommended by doctors & physical therapists who’re familiar with CRPS.
Early this morning I got these 2 items out of my luggage, and set them up. There’s a metal table in my room beside a comfy chair, so I set them up there. When I turned on the reading light above the chair, it looked as though these 2 items were glowing!
The screen of my TENS is blue, but for some reason its glow seems kind of eerie in this photo – especially beside my claw-like dynamic splint ,-)