Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-17-2013, 12:43 PM #541
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Default Ulnar nerve neuropathy/CRPS new to forum

Hello to all. Just found this site and wanted to contribute.

A little history on my condition-

In summer of 2011 I was involved in a minor mva(rear ended). I struck my left shoulder on door frame, left elbow struck arm rest. Might have hit head on door as well (no bruising or bumps). Originally diagnosed with sprain of pinkie and ulnar nerve neuropathy.

After about 9-10 months of cortisone shots to little finger and elbow (no improvement), a PRP shot in pinkie (no improvement), months of 2 different courses of physical therapy, couple of MRIs, and an EMG (which showed a compression of te nerve through the cubital tunnel I had a submuscular ulnar nerve transposition in Spring of 2012.

I have since had a couple more courses of OT including a session of work hardening that actually caused me to re-injure my elbow (as evident by another MRI) and was demote back to OT. Just recently the doctor sent me to a pain clinic to rule out CRPS. Well what do you know, it wasn't ruled out but added to my growing list of diagnosises (to include medial encondelytiyis(sp)).
My symptoms for CPRS are: swelling from basically elbow to fingertips during night time (will wake up swollen and then it takes about 2 days for swelling to go down-sometimes longer), change in skin colour, pain in elbow and fingers, numbness in pinkie and ring finger (alternates between pain and numbness), pins and needles in forearm, changes in tempatures to touch (elbow and forearm burning hot fingers ice cold).
Now have a stellate ganglion block scheduled for next week.

I have been out of work since the original accident.

It's nice to know I'm not crazy and there is actually something wrong with me that others are going through. Turns out a friend has this and is so bad they were talking about a spinal cord stimulator or drug pump.
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Old 05-18-2013, 10:58 AM #542
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Default CRPS Newbie

Hi

I developed CRPS following wrist surgery in December 2012. Unfortunately, the surgery was on my dominant side. I have been going to seeing the surgeon and a pain specialist and going to physio.

I had a steroid injection in my shoulder. That resulted in one magical day during which I could make a nearly normal fist. I also had a stellate ganglion block which doesn't seem to have done much of anything.

I am slowly getting some range of motion back in my hand and wrist. However, I still have pain in my entire arm - well, basically from my neck through to my fingers.

I have been trying to stay positive and keep up with things at work despite the disruption of the doctor and physio appointments. Strangely, I am finding the increase in the range of motion discouraging because the pain is still the same. I guess I just thought the pain would start to go away when the mobility improved and seeing the mobility come back is making the pain seem more permanent.

So, I am struggling a bit with my motivation at the moment and trying to work up the energy to tackle the pile of work I brought home with me. Of course, I know I shouldn't complain. I haven't been dealing with this for very long.
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Old 05-18-2013, 06:27 PM #543
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Quote:
Originally Posted by KimA View Post
Hi

I developed CRPS following wrist surgery in December 2012. Unfortunately, the surgery was on my dominant side. I have been going to seeing the surgeon and a pain specialist and going to physio.

I had a steroid injection in my shoulder. That resulted in one magical day during which I could make a nearly normal fist. I also had a stellate ganglion block which doesn't seem to have done much of anything.

I am slowly getting some range of motion back in my hand and wrist. However, I still have pain in my entire arm - well, basically from my neck through to my fingers.

I have been trying to stay positive and keep up with things at work despite the disruption of the doctor and physio appointments. Strangely, I am finding the increase in the range of motion discouraging because the pain is still the same. I guess I just thought the pain would start to go away when the mobility improved and seeing the mobility come back is making the pain seem more permanent.

So, I am struggling a bit with my motivation at the moment and trying to work up the energy to tackle the pile of work I brought home with me. Of course, I know I shouldn't complain. I haven't been dealing with this for very long.
I feel your frustration. I am in the same boat (except my injury is my non-dominant side. I go for my stellate ganglion block Monday morning.
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Old 05-19-2013, 02:13 AM #544
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Good luck with the block. My advice would be if they offer you sedation, take it. I don't like sedation so I did it with just a local. If I have to do it again, I will definitely use light sedation.

I hope the block works for you.
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Old 05-22-2013, 11:53 PM #545
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Default Hang in there

Quote:
Originally Posted by KimA View Post
Hi

I developed CRPS following wrist surgery in December 2012. Unfortunately, the surgery was on my dominant side. I have been going to seeing the surgeon and a pain specialist and going to physio.

I had a steroid injection in my shoulder. That resulted in one magical day during which I could make a nearly normal fist. I also had a stellate ganglion block which doesn't seem to have done much of anything.

I am slowly getting some range of motion back in my hand and wrist. However, I still have pain in my entire arm - well, basically from my neck through to my fingers.

I have been trying to stay positive and keep up with things at work despite the disruption of the doctor and physio appointments. Strangely, I am finding the increase in the range of motion discouraging because the pain is still the same. I guess I just thought the pain would start to go away when the mobility improved and seeing the mobility come back is making the pain seem more permanent.

So, I am struggling a bit with my motivation at the moment and trying to work up the energy to tackle the pile of work I brought home with me. Of course, I know I shouldn't complain. I haven't been dealing with this for very long.
Thanks for sharing Kim. And in my opinion, five minutes of this is too long. I've had CRPS II for ten years. A back surgery that changed my life. I worked for many years with this and still do, but not anywhere near the pace I use to could do just a few years ago. I am lucky enough to be able to work my own hours. This has become a must. CRPS is unpredictable. Working with this condition is tough at best some days. Are you taking something like Neurontin for pain control, for neuropathic type pain? I know that for me at this point it would be hard, if not impossible to live without this med. Be good to yourself and rest when needed. Hang in there hon. All of this is fairly new for you. Keep doing research and you will hopefully find what works best for you. It seems we're all the same with this and yet we're all different.
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Old 05-23-2013, 02:39 PM #546
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Smirk My RSD Story

FONT="Comic Sans MS"][/FONT]


HELLO TO ALL,

I thought it was time to post my story (@ least while I felt up to being in front of the computer) I havent been on in a few weeks due to the joys of RSD/CRPS. I hit my 9yr mark next month and it's not been an easy road what so ever as you all know the joys of living w/this awfaul condition. It started w/me after I changed & rotated the tires on my car, I tweeked something in my hip & back apperently & w/in days I could hardly stand or walk. Prior to this I was active & heathly my daughter & I were always doin something (she was 5 then) I was worried when all the sudden I went from that to hardly being able to stand or walk & I went to doctor after doctor who of course tried to say its all in my head let them deal w/what I am & see how they feel is how I felt it was sooo frustrating! funny thing I met this guy who became like family he told me I know you have what I do, you have RSD I'd bet on it & the doctors said NO NO NO your too young... So after 4yrs of WI weather & doctors not doing a damn thing I moved back to fla which is where I grew up & the weather is alot easier on the body compaired to the WI winters lol.
Anyways after I got here I went to the RSD Foundation in Tampa where they do certian things to actually "test" for RSD/CRPS which I was told stage 1 entire body stage 2 on the right side, that was 5yrs ago now so it's well beyond that but I will say for now Im not in a wheelchair but I walk w/a cane sometimes a walker depending on the day so Im thankful for that. I recently started seeing a doctor who has found that I have athritis (not good @ spelling sry) in both hips the right hip is about 2in higher than the left so he wants me to get fitted for a shoe lift to make my legs more even & both ball joints are deterating. I dont have insurance right now or even a job so gettin the MRI's of my back hips & pelvis are on the back burner for now same w/x-rays of my back, its expensive enough for doc appts every month.
Every single day is a struggle & a fight living w/RSD but I have learned that I can only deal w/each day as it comes, I dont worry about tomorrow cuz who knows how Im going to feel. I wont lie there have been days where I have just wanted to give up & be done w/it I have my days where all I do is cry & feel soooooooo alone I dont have my kids which of course makes it harder cuz they both live out of state so I dont even get to see them which kills me every single day I think thats the hardest of all honestly but thru all of this I've learned I have to just keep fighting no matter what cuz I have 2 beautiful girls who mean more than anything else in the world they are my heart & soul so in order to go visit them I have to fight.
Thanks to all who read this Im glad I have a place to vent & know that there are so many other people like me out there & as my friend Phillip would say "we're special" & if it werent for him being there to answer ?s let me vent scream cry or talk to I dont know what I would have done (he is in his 12th yr of RSD/CRPS now I believe) so if there's anything I can help someone else w/please dont hesitate to ask, Thanks for reading & have a happy day
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Old 05-23-2013, 07:20 PM #547
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Default My CRPS II life as I know it...

I’ve made over a 100 posts and had yet to ever post here. It's long but here it goes, my CRPS II life as I know it.

When I was a young girl I slipped on some outdoor metal & concrete steps and a few days later experienced my first electric zingers of a bulging disc. Before my back surgery in 2004 I had seen and would get relief from chiropractors, but never saw a medical doctor when episodes arose.

On July 4, 2004 my mother passed away from a five year battle with breast cancer. My being only 36, an only child, my mother and I very close and my last living parent, this was a devastating loss for me. I was simultaneously going through a divorce. I have three children ages (at that time) 2, 11 & 15. My mother lived in West Texas and me in Colorado. 19 road trips to see her the year prior, and being with her for nearly a year up until her death, times were hard to say the least. After her death, I went back to Colo. bought a home, and back to TX I went to sell her home. While packing up the home she had lived in for 20 years, I started to go for runs in the mornings to try and burn off stress and the weight I had gain from my pregnancy a couple of years earlier, not to mention high cal road food for nearly a year too.

I started to have a nagging lower back ache. As each day passed it got so bad, I thought wow, this is really the most severe it’s ever been. I am out of state and put off an ER visit as long as possible. While at the ER the doc takes an x-ray, reads it, and comes to get me to show me the x-ray. He says “were you in a car accident?” I’m like nooooo. He tells me I have a very ruptured disc that is compressing my spine by 70 some odd percent and that I need ER Surgery, like right then. I say whoa doc, um.. I’m from out of state and I’m packing up my mom’s house, and well, yeah that’s not happening right this minute.

On December 4, 2004 I went in for an L5-S1 discectomy with an anticipated hospital stay of 3 days and a full recover in one year’s time. I woke up from surgery screaming in pain. Pain in my foot. My right foot could not tolerate even a sheet. My ankle felt shattered. I couldn’t move from the waist down for a week. I also could not lift my head after surgery for a week because the doc nicked my dura, and were afraid of a massive headache they couldn’t control. With this new condition, I really struggled to be a single parent of three, the youngest only two years old.

After a week, I slowly started to learn to walk again. The feeling running down my calf into my foot never came back. The pain I awoke from surgery did subside somewhat over the years, thank God! But today I have issues of spread, and tremors, and such. My limbs and fingers/toes get ICE cold. They turn all colors of the rainbow too.

Spread… over nearly ten years it has gone from right to left leg, then sporadically in my torso, and now very well into my arms and hands, neck and shoulders. Vision issues, intestinal issues, sensory (sound can be the worst) issues, joint problems.. if I kept going I would only sound like a hypochondriac. However all very real.

The upswing to my story is that I fell in love with a longtime friend, and it took five years of asking and I think my testing him, for me to say yes. I really wanted to be sure he knew what he was getting into. And much to my relief he is on board 100%. He waited me out and I am so happy for it. He gets it as much as anyone can who doesn’t have this. Life is funny with all it offers. We totally work around all things CRPS II. We keep a sense of humor.

When I first was Dx, three months after surgery, there was not hardly anything on the web about CRPS. Years later I was grateful to find this site. I am often asked by professionals if I have a support group, and well, I always reference this site. I always find solace here.
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Old 06-03-2013, 12:54 AM #548
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Default New here..

Hi! I am new here and just recently diagnosed with RSD in my left foot. Which I broke at the end of Oct. 2012 and it still has not healed I am starting my 2nd round of injections this Tues. in hopes that it helps more
then the 1st time around. I am also getting the epidural block! Never had one of those and I am kind of scared!! I don't know much about RSD so I am learning as I go. As far as pain, I have been dealing with pain for the past 7 years due to a car accident. That left me with neck issues, migraines, and lower back problems. I've felt pretty good for the past 1 year or so due to a great neurologist and a physical therapist but now I feel like I've taken a HUGE step back!! I think I'd rather deal with my neck and back issues and
not RSD, this is awful!!

Take care and stay positive!!

~B~
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Old 06-03-2013, 07:19 PM #549
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Default Diagnosed just a month ago

Two months ago my now husband and I eloped to return to a big reception. The night before the reception I broke my left foot in two places. I continued to walk, dance and wear heels the rest of the weekend (you only do it once, right??) before discovering just how injured I actually was. Just one short week after being put in a non-weight bearing boot my pain began to show RSD symptoms such as an increase in pain, my foot turned blue to the point of it looking dead, and the constant feeling of pins and needles. My original doctor simply put me on medical leave from my teaching job and told me to keep it elevated that it was simply from the break. My instincts proved true that something just wasn't right and I was blessed enough to have an amazing second opinion dr. that diagnosed it RSD immediately. He quickly referred me to the best anesthesiologist in the Charlotte region and I had an appt. with that dr. a week later. He said I'm lucky in that we caught it earlier than most so that I have a real chance at beating it. I'm going to beat it. I'm taking Lyrica 3x/daily as well as Nucenta. They are already helping me to walk--something I haven't done in over 5 weeks and what I thought was impossible with the electric shocks of pain in my feet and legs when I tried...that was a big achievement in and of itself. Today I had the first of 6-8 weekly sympathetic nerve block injections. I'm feeling hopeful. I have too much to look forward to with my amazing new husband and my own career and personal goals to let this stop me..maybe just slow me down a little bit to remind me of my strength.
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Old 07-12-2013, 12:25 AM #550
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Hello to u all I hope ur all havin better days..I have not been on here for awhile cuz Ive been laid up in bed only gettin up when I hav to. I hav been in tears tryin not to scream from pain & tonite is no better I really dont know how much more I can take of this..Anyone that has any advic er plzxx lay it on me cant take many more days/nites like this
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