Chronic Pain Syndrome...with little pain?
I provide case management and direct patient care for individuals with physical and mental disabilities. Last year at this time, I was training to also become a wildland firefighter (forestry). By July, an individual I support had flung a metal door open and I flung my hand up to stop the door from slamming into my face. (I had been in the process of reaching out to open it when it came flying open.) I heard a loud crunch as my hand bent at a funky angle, reported it to HR, walked it off and assumed I'd probably just sprained it. Two days later I was back to direct patient care, doing a whole lot of lifting with a quadriplegic individual.
A week later, my hand was twice it's normal size and I couldn't even lift a pencil. The pain was ridiculous, all the way through to my back and my hand felt like it had ants inside it. Three doctors, two X-Rays, ultrasound therapy, two MRIs and an arthrogram later it was discovered I had a dislocated lunate, torn tendon with a dislocated ulna and severe bone bruising on pretty much the whole hand. And a strange bump that might be a cyst or a broken abone/calcification of unknown origin. I'm not progressing in OT and now I have some variation of Complex Regional Pain Syndrome, with hypo-sensitivity to pain but hyper awareness of sensations and crappy circulation to that arm and hives if I work with my hand too much. I can't feel the pain they say I should be in. :/
Anyone else heard of something like this?
The primary doctor over seeing my care has said he thinks with more time we can use occupational therapy and resolve the problem. The only problem with that is the OT I saw last said she thinks there's a bigger issue he hasn't seen yet and that we should start considering surgery before I have more permanent damage. They've concluded the Pain Syndrome will likely be lifelong, but are hoping to mitigate damage at this point beyond that and maybe fix the tendon that's completely split. Now they monitor my hand for color loss, temperature decrease, a rash/hives or for me to feel ants crawling which means I have impacted nerves from overdoing it and that's how we tell I'm in pain. :/ I always feel a basic 3 for pain, but it takes a LOT for me to register beyond that.
The surgeon overseeing my OT is also immensely amused at the "rare" allergic reaction my hand is having when I push too hard or we do a new exercise in OT. I'm feeling really stuck and just kinda looking for people who have experienced anything similar or know more than Google has been able to show me. Apparently what I have is unusual enough neither he surgeon nor OT are able to give me much help.
@Saimar86 - one of the most frustrating things to deal with is not being able to get some sort of answer that makes sense (or means that something can be done)! Having fibromyalgia myself, I can empathize with so much of the frustration I read in your posts.
Don't stop advocating for yourself! You're asking questions, wanting to learn and looking for support - I hope you know how awesome that is!
If you would like, you can message me - for validation, support, or just a safe space to voice your frustration!
I wish you the answers you need and some direction on how to get relief!
@Saimar86 I have rsd with sencitivety in my legs I can't we're clothes at all can't get out of bead or due eneything at all I broke my ankle go rsd and then it spread to both legs back feet hand and privets I also were a back brace from chest to hip cunt get out of bead or due eney thing now I have fibromyalga spinalstnoses rsd and dystonia I have contortions of my legs so bad it makes my legs go behind my head and doe the splits in bed I take oxycodon 30mg seven times a day and morphine 60mg for times a day and dilodid 8mg three times a day and it dus little I have a 24 7 care giver and I'm in suvear pain I'm now in the ICU at the hospital dieing chat with me if you get the chance