CRPS in my right wrist...
 

Hi...this is my first post. I'm 30 now (my age feels important to me in realizing how the duration of this injury is going to affect me for sooooooooo long) and when I was 28 I was injured, well it was a few days before my 29th b-day.)

In May of 2010 I worked in a hospital. One night while a pt became enraged and started slamming me by my hand which he was crushing, on the side rail of the bed...hitting me from the wrist to the elbow, on the same right side that he had hyperextended the thumb.

Our house supervisor and charge nurse and staff all saw my arm swell immediately and we all decided I should go home, or be seen, or something. I went home and called the name on the list they gave me and went in a few hours later to be seen. Xrays were negative for a break, so began my journey with a soft tissue injury.

They said it was sprained, it would not heal. It was bruised and swollen every day, and hurt like hell! I wore a brace, I saw hand specialists, I had an MRI. They decided I needed a DeQ Release. Recently I had it done. I'd had OT before and after the surgery, probably 50+ visits in all.

By December the WC dr was demanding I go back to work but I still had NO relief....I was constantly in pain and eating Vicodin like it was candy. I hired an attorney. I began to see my lawyer's doctor and he made me temporarily totally disabled.

By March , with the very real threat of losing my health insurance for my children and myself I begged my doctor (Lawyer's dr, not on the MPN) to go ahead and let me go back to work with restrictions. I returned to work as a (ironically) claim payment administrator for a county run insurance program. I processed payments for medical expenses for the county's indigent patients of our hospital, outpatient stuff. My hand hurt like hell, and kept swelling, I did accupuncture and had a negative EMG.

In July my arm was swollen constantly, cold, sweaty, hairless, and turning purple and black on occassion. Finally I couldn't take the pain anymore and left work one day to see a dr on the MPN, I changed lawyers that day, because the lawyer I had been using and his dr were not getting me in to see specialists after 7 months of waiting for referrals. And I was tired of not having the benefits of working off the MPN. My lawyer actually liked my new doctor very much and has a good relationship with her and said they would send me to her if I weren't already seeing her.

Immediately I was into see a Neurologist, Pain Management Doc, and with a strong warning An Orthopedic Surgeon. Her warning was, "an ortho is like a hammer, everything is a nail to them." Sure enough a second negative EMG, no relief from a cortizon shot, and he still wants to believe I have carpal tunnel and he can save the world on CT Surgery at a time. No...I don't have carpal tunnel.

The Neuro and Pain docs concurred and my diagnosis became official...CRPS. Intensive occupational therapy, two nerve blocks, and a switch to a patch for pain meds (Butrans) and a trial of Lyrica and Neurontin (exhausted me) and now Cymbalta, we're working on finding the right meds for me...but Butrans has kind of changed my life. I take Roboxin for the muscle spasms in my fingers.

Now...the only area in which my doctor fails me...she makes me work. I am in SO much pain. My current work restrictions are: no use of the right hand, must work in an environment above 70 degrees, and work shift of no more than 4 hours, complete prior to 5 pm so that patient can take stronger pain medication. And yes, my employer has a job for me. I am a patient greeter, I sit in front of the lab and greet people and tell them where things are in the hospital. It's not too bad, but when I'm in such severe pain, the last thing I want to be is the happy customer service employee. I want everyone to leave me alone.

Soon is my AME. Wednesday is my first appointment with Dr. P. My weeks are a mess of appointments. I have to work 4 hours and then go to all my appointments...this week is LA (which is 2 hours from home and I have to have a driver because I cannot drive that far) for the AME. Tuesday is a follow up from my two nerve blocks and OT. Thurs I get off from all appts to fight in court with my horrible ex husband, and Friday I have OT.

The pain is insane. I just never thought I'd ever be in this much pain. I tell my new husband that it's like I'm wearing a bracelet of fire. My pinky, ring, and middle fingers feel like they are being seared by a hot wire right across the knuckles. It's incredible the amount of pain I'm in. And my arm looks TERRIBLE. I am weak, my range of motion is not within normal limits. I feel worthless to my family (I'm a HUGE burden to everyone, I need help with many many tasks) and to my employer and to everyone around me.

I just wanted to tell my story, I wanted to search around and figure out what's going to happen at my appointment tomorrow. I just wanted to be around people who know what it's like to have a bracelet of fire.

Honestly, you'll spend more time with one of his intern's then him, unless he does AME appointments differently.

AME appointments are rather different than normal consults. Take notes if you're able. Even better, if you're bringing someone with you, have them come in and take notes.

I'm curious to see what he tells you. What he said to me didn't match his report...

I saw him for a consult, not an AME. I fought to see him and I'm still not sure how I feel about him. Some people love him, some really dislike him.

Just keep an open mind. If you have any interest in Ketamine, he does offer it, so ask him about it!

I hate to say this because I'll be curious, but you probably shouldn't post details about the appointment after since it is a public forum and you've given enough specifics with the appointment date for WC to figure out who you are if they're so inclined. I might be being paranoid...

Jimsgirl,
Welcome to the family.
We all know all too well about the burning pain you're experiencing.
My RSD started in my wrist/hand too but now it's beginning to spread. Also to compound my problem I also have degenerative cerebral atrophy and the one point of spreading has invaded my cerebellum.
Good luck with your doctor visit. At least your going in the right direction...

You can ask the Admin's if you can create another username.

Like I said, I might be being paranoid, but with an open WC case you kind of have to be. My attorney advises not to speak with family or friends about my health. --crazy. But, if you get active at Neurotalk, you don't want to leave a trail.

Lit Love may no better than I in the context of WC, but last I heard, under California law, a patient is always free to tape record any "Interdependent Medical Exam" (IME) required by an insurance company or and adverse party in litigation and, except in psychiatric exams, have a witness there for you. I know at my IME, it was my wife who took a dozen or more pages of notes as she was putting fresh tapes the recorder.

But in the case of the AME, s/he serves almost like an arbitrator, mutually selected by counsel on both sides, so someone you don't want to annoy. I would make a point of trying to discuss this with your attorney before the exam.

But what's troubling me - if I read you right - is that the doc hired by your lawyer says you can work! If so, what's the purpose of the AIM where you say the diagnosis is now settled? I'm guessing the hope is that Dr. P will be willing to go beyond what "your" expert has recommended, but I must confess to being a little confused. In any event, I would suggest sparing no details whatsoever as to how your CRPS impairs your ability to meaningfully "work."

Good luck!

Mike

PS Totally agree with the other comments about keeping ANYTHING having to do with litigation out of public forums.

PPS TESTING AN OFF THE WALL HYPOTHESIS RE SEARCH ENGINES

I am so sorry that you have to go through all of this. WC is a nightmare...and only makes the whole situation with RSD even MORE of a nightmare than it is all by itself. Stay strong and keep fighting for good medical care. In the world of WC and all the legal stuff, you are the one who needs to keep the focus on getting the medical care you need above all other things. Proper treatment is your only hope to getting back the function and relief from the pain.

My dad gave me some great advice that has really helped me through some of my most difficult times, and that is to not worry about the things that are out of your control and stay focused on the things you can. True...it's easier said than done...but if you can do it, it helps a lot to keep you focused on what is important. You can't control what the doctors say/do, you can't control what WC does, you can't control what the outcome is in court. That doesn't mean that you ignore any of these things or stop fighting...but when something is out of your control you can't let it eat you up inside...just refocus on what you CAN do about it and then move on.

And I agree with Lit Love...don't say anything that you wouldn't want to come back at you in court with WC. Even something you say in anger could be used against you. It may be paranoid but...well...it happens.

That said...this is an amazing community or wonderful, supportive people who know what you are going through and who can help answer questions or give advice based on their own experiences. We all suffer from this monster. Even if you just need to vent about what you are going through and just need to get things off your chest (and don't want to burden your loved ones with it)...we're here for you.

Good luck to you with all those appointments. I hope you are able to get the treatment you need to help you.

fmichael's right, about maybe annoying any AME, let alone P... The resident I had (who was great) forewarned me he's a great doc but has a king sized ego. Ask your attorney if notes or recording is appropriate. Although, I think your appointment happened already...

The appointment seemed fine to me...completely neutral. It does seem weird to go to a dr's appt and be examined and then that's it...like half the appointment is missing, LOL, the part where they tell you something. I guess that'll come with the report?

Tomorrow is my appointment with Dr. P. I'm really looking forward to that one to see if there are treatment options. I had OT this am and they just keep saying, "you're so young! Don't let this get you." I sure hope we can fix it. I do all of the therapies and exercises. I try very, very hard.

Jimsgirl, check for a PM message from me.
Up in the right under the Welcome "your username"

If you are willing to work very hard and do the exercises then that is a step in the right direction. If they can get your pain under control, then you have a real good chance that things will work out well for you. Having a fighting attitude is so key to not letting RSD take over your life...never stop fighting and hoping for the best. It's hard work...but if you're willing to do your part then you can do it.

I'm only 27...almost 28...and I got hurt when I was 25 so I know what you/they mean about being so young. You have your whole life ahead of you and this thing doesn't go away. I have a routine of PT exercises everyday (these kill me but they are worth it because I went from not being able to walk or stand at all to now walking a little bit with the walker) and am working with the doctor to get the pain and other symptoms under control...but I'm fighting for my quality of life so it's worth the effort. You just keep thinking about what your goals are, and what you need to do to achieve them, and you will get there.

Good luck with your appt...I really hope that you are able to get the help that you need.