Dislocations so far today: left wrist
Subluxations so far today: Right shoulder a couple of times, my SI joint is threatening
Meds: allergy meds, OTC naproxen, 1/3 amitriptyline last night
Major complaint: My right hand is pretty much a painful, swollen, red/purple/blue useless lump. Stenosis pain has been acting up.
Sorry about the post-gap. Between internet issues and having only one hand that it doesn't hurt like hell to type with, I know I've been slacking. Here is are my updates:
- I talked to Dr. E about what his advice for treatment in the meantime while I wait for my May 24th appointment.
- His response was that since Reflex Sympathetic Dystrophy (RSD) is such a difficult condition to treat, I really need to see this specialist about it and not him. He told me to just hold on and wait for my appointment without treatment.
- This is not the news I wanted. But I'm off the Ketoprofen and back to taking Aleve for daily pain and my EDS painkillers/sleep aids when the pain gets too bad.
- I got all the info requested to Social Security finally after a long round of Phone Tag (completely one-sided, so maybe that's just Phone Badgering) and I think I may be all set in that area for the time being.
- My right hand continues to get worse. When it isn't red, it goes all purple or grey or blue. Some days I get use of the hand by late in the evening. Some days I don't.
- I'm getting similar pain, at a much much lower level, in my left hand and wrist, and sometimes in my toes and ankles.
- The best way to describe the pain in my right hand is to imagine what it would be like if instead of finger-bones, you had thin glass rods in your fingers holding them straight--and when you bend your fingers they snap and shatter. That's not an incentive to bend my fingers even when the swelling goes down enough that they can bend without splitting the skin.
- I've learned how to sleep on my hand in such a way that prevents me from moving my fingers at all or else the pain wakes me up.
- When not bending, there is a throbbing dull pain in my hand/wrist joints which has been there since November.
- Sometimes my right hand will get especially cold and grey/blue and start to tingle and burn like the pain of holding your hand in ice water for too long but worse. Usually at the point, I get scared about cells dying from lack of blood so I run warm water over my hand. From there I've got a 50/50 chance that the blood will come back into my hand and it will warm up without incident OR that the feeling of the blood coming back will make want to throw up because it hurts so bad. The tingling intensifies and then BLAM! the pain hits and I'm doubled over hyperventilating and crying. I can't move my hand at all and the nerves don't register anything touching it (dry towels etc) for at least a minute afterward. The pain fades, the hand swells, and it turns bright red. OW. I'm not sure it's worth it to get the blood back into it.
- Popping my knuckles now nearly always hurts instead of helps. So I wish my joints would stop feeling like they need to pop.
- I tried to get on a cancellation list for my May 24th appointment so I could be seen earlier, but they don't have a cancellation list. She did tell me that I could keep calling back to check to see if they had any openings. Right now the earliest opening is in June. That doesn't help.
- My nails have gone all ridge-y and gross.
- The lump on my middle finger is gone now. There was a little dot where it used to be, but that's gone too now.
- I'm teaching myself to write left handed. My attempts are pretty cute looking.
I did get to talk to someone online who has RSD and this is how it was explained to me: when it shows up in a hand, normally there has been an injury to that shoulder. Instead of the normal response to shoulder pain/injury, the central nervous system goes a little bonkers (sometimes through an immune response) and either the brain or spinal cord detects that the hand has been injured, even though it is not the case. Nothing can convince the brain this isn't so. The hand responds accordingly: it swells and is in pain. When this continues for a long enough time, the brain concerned that the hand is in so much pain but will not heal (whose fault is that!?) it decides to amputate the hand by no longer sending blood to the limb. Hence the coldness and the blue/grey color. It's pissed at the hand so decides to shun it, basically.
This causes more pain and the hand and body fight each other with nerve impulses
The hand yells, Hey! I need more blood down here!
And the brain responds, La la la la! I can't hear you!
So basically it's reverse Phantom Limb Pain. The human brain is such a messed up place. Luckily, I find this super amusing.
Hand stiffness using middle finger as measure
Time: 7:57 PM
Can touch forearm? nope but not as bad
Angle of extension of the center joint of finger: 35º
Angle of extension of the last joint of finger: 105º OW!
Can touch forearm? Not even funny how much this isn't a possibility
Angle of extension of the center joint of finger: 20º
Angle of extension of the last joint of finger: 70º