Hi, my name is Maddy and I've had RSD for over 4 years now. My upper right side is affected from a very badly broken right arm. I've never been able to recuperate the arm because of the RSD and therefore my arm is quite disabled because of it. My pain levels go quite high. I'm almost never out of pain. Because I live in a small city, there is nothing here to help me with this condition. My doctor just writes out prescriptions for more pain meds from time to time (percosets AND two different strengths of slow release Oxycontin).

I do a lot of research online, but the things that interest me, like Transcranial Magnetic Stimulation. or t.D.C.S (which I found out about on this site!), I cannot do because of having a pace maker.

I don't really want to do a whole history. I just want to say 'hi' and 'thank you' for all the knowledge everyone offers here.

My latest research is about the newly released drug 'Zohydro ER'. If anyone has info about this, I'd be grateful.

Well, on to more reading here on NT.

Blessings to all,

Maddy

Thanks for the warm welcome, all!

It's such a relief to have people who experience all the craziness associated with this mess. My family and my sweetheart are beyond supportive, but there's just no way they can ever fully understand.

I'm 28 and was diagnosed with CRPS after a labyrinth of pain specialists and PTs and orthos, yada yada yada. It was a simple game of laser tag that took my life away and replaced it with this sizzle-foot and a hot pink cane. I had a successful SCS trial in September, but when I went for the full installation in November I didn't see the same relief. I've actually had to turn it off because now it adds to the pain. Not cool, man.

My "multidisciplinary" team includes a balding, yet pony-tailed therapist who urges me to calm myself by tapping my forehead over and over, a chipper blonde PT who could be a Cheerio on Glee, a ghost of a pain management specialist who floats into our appointments for 2 minutes, and a genius neurologist whose calendar can only book 6 months between appointments. Now I appreciate a good, kooky character in my life, but to have them responsible for my pain? C'mon. Thank goodness for my Primary who understands the "Care" that's in his title. It's been like herding cats trying to figure out how to get them to work together, and they all seem to be throwing different medicines at me. So 1) Does anyone have suggestions on who runs point in their care team? A neurologist? Pain Management? Primary? 2) Does anyone have a medicine combination that really works for them now? I'm allergic to NSAIDs, so anti-inflammatory meds are unfortunately out.

I'm really looking forward to meeting you all and finding the funny wherever we can!

I have never posted anything before so if I do something wrong just laugh- I know I will! I have had RSD/CRPS for 2 1/2 years and so far have it in both of my legs. Sometime I will tell you about the story of how it came to be in both legs, it's strange and is kinda funny, but not today. I try hard to stay positive and desire to go back to work everyday! I can share funny moments such as the following;
We were at the beach and I wanted to walk into the water. Would you know that it took me 15 minutes to reach the water with my Husband holding tight to my arm. I was so amazed and baffled with the unsteadiness of my (one leg at the time) and how my feet shifted with every movement. I remember thinking, "Wow.. sand can be really hard to walk on"! Once we got to about waist high in the water I noticed the beautiful blue-green hue as every wave attempted to reach up as if to touch my face with the smell of salt water. While we were in the water my Husband thought he saw a Sting Ray and I immediately without thinking I said, "I don't need a sting ray", and turned and tried to walk back to the beach on my own. Twenty seconds later I found myself rolling in the waves until I washed up on the beach like a whale and yelled, "Where is my remote control I have fallen and can't get up button"! I laughed for at least 5-10 wonderful minutes and said to myself "make every moment count".

Having RSD/CRPS stinks, there is no other way around it! I am just happy to be able to talk in a way with others that share the same challenges. I am constantly revisiting what is realistic, things that I can or can not do. I continue to have dreams about what I want to accomplish and each day strive to not let some disease define who I am. I feel that to often if we concentrate on just our pain that after a while we loose who we are. I know that I have days that are very painful and I am tired often but I know that by reaching out to you, I am not alone. Thank you for listening or should I say reading this post!

WELCOME DAYLE, JEWL & MADDY!!
Im So sorry that you all have to deal with RSD/CRPS or that anyone does for that matter because its beyond frustrating but at least we all have eachother & this place to share our thoughts, ideas, info, our up's down's & anything in between. Although we all may have someone who loves us standing beside us trying to understand what we go thru & are sympathetic to us its just not the same as those who are going thru the same thing as we are who know exactly what it's like in one way or another & lean on vent to, laugh with etc so for that I thank all of you & to the "newbies" Welcome to our wonderful group of people everyone here is just AMAZING!!!

Hello

Where to start? I am a 27 year old female who lives in the high foothills of California about 40 minutes down hill from Lake Tahoe. Forgive me this is going to be a long post. Four years ago i was in a car accident somewhat of my own cause...

I had been having car issues where it would just spontaneously lose all power including lights, a computer issue I later found out. That morning my shift at the deli began at 5 am so I was out on my way to work . At 4:50 my car lost all power on the spiraling off ramp , it was very dark as the moon was only a little more then half full and I was afraid I was going to be plowed into if I left the car on the middle of the off ramp like that. So being the 180lb, independent, belly dancing, weight lifting, horse training, two jobs and college girl I was. I decided to push the car the rest of the way off onto the thin shoulder of the off ramp.
This off ramp spiraled at a tilt like a race track and I was very close to having the car all the way on the upper shoulder. So I put it into neutral , opened the door and began to stand in the lee of the door with one hand on the steering wheel to direct the car. I had done this many times before and didn't think it would change my entire life. It did. The car rolled back on me dragging me pinned by door and car frame down the steep grassy knoll that made up the back side of the spiral. If the car continued its path I would have been dragged out onto the freeway below , I had the brief thought I was going to die. I had luckily landed partially inside the car on the floor board beneath the steering wheel. Nearly dislocating my right shoulder I was able to engage the emergency brake and the car slowly came to a stop leaning its weight on top of my pinned scissored legs.
I must have done some good deeds in my past life because that day , I had the most luck and the worst . My luck continued not only had it rained the previous day, the grass was waist high to buffer me and I also had my cell phone in a buttoned jacket pocket. I was able to call 911 emergency. I was hysterical at first the dispatcher didn't believe me and actually hung up! I watched as cars headlights skimmed past briefly lighting the ceiling of the car. Somewhere between one breath and the next I began to panic. Somehow I wrenched myself free from under the car, I couldn't stand. Finally the Dispatcher called back and believed me, she sent the ambulance finally , telling me not to move, to late.
The paramedics arrived after what seemed to be forever. It ended up being the same ones I made breakfast for every morning. I was in shock but Brian the youngest paramedic made an inside joke about how my thunder thighs saved my ***. He had been in the deli with his comrades and they found out he likes them chubby, somehow my upturned rump was chosen as an example of the body shape he liked. It broke the shock I laughed briefly then began to cry all the way to the hospital.
At the hospital they found no lacerations or bruising, visually checked my pee for blood and sent me home , no xrays , no nothing. Which later helped me a little as i used it against them to reduce my bill with them. I took the pain killers and had my dad take me directly to the impound as I knew I would bruise and be immobile in pain the next day.
I spent four days on my dads couch then went home when I finally could walk. after another day or two I went to see my doctor Wy ling Go, and was given a brief exam bruised from hip to toes on the left outer side, go home say off a week your young you will heal. Week after week i went back for three months I still was in more pain then I had ever felt, the swelling was immense and ice hurt like hell. More symptoms followed eventually I gave in and selected a cane to help my unsteady gait.
I quickly lost my job, my fiancee, my apartment, I racked up debt after that trying to get treatment with out insurance. I moved in with my father who lived with his girlfriend eventually even that went sour even my own family didn't believe me. Some days I was mobile others bedridden. I changed doctors saw specialists even was homeless for two nights before my grandmother took me in to sleep on her floor in her one bedroom studio granny flat.
I searched for jobs everyday but its very limited when you can't stand for more then an hour and only have a high school diploma. So I went back to school trying to finish my aa. I was in more pain then ever and i had lost even more my independence, my figure, it seemed I even lost hope .I kept trying new things my new doctor wanted test and more tests. I was in the whole for 12k I had no medical insurance and no relief from the pain but hot showers. I slept less then an hour straight at night. I lost hope and nearly tried to kill myself. I learned to avoid pain causing things, exercise, dance, stress, beans, and walking.
Eventually though I found love which led me to a job but by that time it had been two years since the accident. I had made no headway to a diagnosis or even a little relief after my suicide incident they put me on flexeril, naproxen and one 500mg opioid at night time. These medications made it possible to go to work but I was useless afterwards it seemed to take all my toughness, endurance and after work i gave up to the pain.
My boyfriend and I moved in together, worked together, cried and laughed together, over the next year. I don't know what I would do without him. I am unable to live alone, I cannot do ...so many mundane things even when I was off for a few days in a row.
February 2013 I was driving my monte carlo and we were plowed into from behind. Totaling both cars and sending me to the ER not only was I out for a month with a severe concussion but my leg was worse then ever it even seemed to spread. By this point I had changed doctors so many times did so many test it was unbelievable and I still had no diagnosis or even a clue what was wrong with my leg. I developed a deep fear about driving not that the pain would let me some days anyways.
Finally the ACA went into effect, I got kaiser Permanente February 2014. It is set up like socialized medicine in japan it is everything all in one big hospital like building. I went in to see Dr. Z( insanely long named doctor) unfortunately my pain was around a 5 that day on the typical 1-10 score, five is a wondrous day for me it is the lowest pain point i have with the exception of when i get sloppy drunk. Dr. Z accused me of drug seeking.
A week and a formal complaint later I have a new doctor Dr. Goodil and she on my very first visit after listening carefully, reading the summary of my medical records and asking a few pertinent questions diagnosed me with RSD. A condition which I had heard of only once before with the second physical therapist I saw but it fits perfectly and even explained the giraffe pattern (livedo reticolaris) that comes and goes on my thigh. After four years almost to a day I am finally getting treatment that may really help. Then thankfully I get laid off... why am I grateful the side effect of my new medication would make work impossible.
Dr. Goodil has put me on gabapentin which am a slowly increasing by one 100 mg every three days. I am now at 1200mg and have now seen either a further spread of the RSD from low back hip knee to calf and ankle. Or the possible side effect of edema it is so hard to tell because the ballon tight swelling is a normal symptom for me just not normally that low. The gabapentin has been helping me sleep by its other most common side effect after I reached 800mg I had the first solid night of sleep in four years. I sleep well if i can get to sleep in the first place. I still take the flexiril, naproxen and opioid as they help the other symptoms. The clamping muscle spasms, the sharp stabs and some of the pain at bed time for now until we get the dose right for the gabapentin I live like a had during the days before in pain sometimes debilitating pain.

Welcome to Neuro Talk. You will find many people here who have RSD. This awful condition happens all to often with severe injury. You have been through so very much. You remain brave. I am glad you have someone in your life who cares. That does make anything we have to deal with better.

Ask your doctor about Ketamine infusions. Sometimes this is used for RSD and has gotten some favorable reports about it from those who have tried it. It was first used on our Military for severe injury. This started the research going. Others on this site may be able to help you too.

You found the right place to go for support and friendship. I too came here not under the best of circumstances, and just never left. Many good people helped me through my own ordeal. Be good to yourself, and find reason each day for some joy in it. ginnie

Thank you , Right now I feel so lost I had fought so long for a diagnosis it feels weird to know why. I feel as if I should be saying what now or like the diagnosis would bring a possible cure, then I find out rsd has no cure but sometimes mysteriously goes away.

Hello all.

I think that I actually joined this forum about a year ago but I've neglected to actually keep up on it.

I was involved in a hit and run 4 years ago and I was the one that got hit. I was on a motorcycle. Tore the **** outta my right calf. Blood, muscle tissue, and fatty tissues were all over my bike. Somehow managed to get the bike off me and made it to the closest house to call for help.

I've had RSD in my right calf for about 4 years now. I'm somewhere in between stage 2 and 3 (I lose motor control sometimes but not all the time, mostly at the end of the day). I use a cane when I need to but I'll muster through it because every time I use that damn stick I feel like I've let it win. I don't let it control me. Not saying that I run a mile every morning but I work a lot and I try to keep my mind busy. I have a couple of really good friends that actually look out for me.

Just recently I just gave into getting the handicap tag. I didn't want it one bit, but my friends finally talked me into it. I hate the staring. It's like "Yeah I *******have one, I actually need it, so **** ***

As far as the "Treatments" I've only really done a few blocks and different medications, Which I have signed off on both of those because of the kind of work that I do. (I'm a master luthier, so in other words I build guitars from scratch. I work at two custom shops and I teach others how to build.) there's a lot of woodworking involved with a lot of sharp tools, which is why i signed off on the meds. I don't need to be operating a band saw that could take my hand or even a few fingers because I took cymbalta or lyrica. so yeah **** that ****. But I do smoke weed, not all the time. Kind of a end of day thing as well.

What am I doing here? Well....I've decided that I need to talk to others that have this curse. Hopefully make a few friends. I have some pretty awesome friends but they don't have this. And I can't expect them to understand. And to be completely honest. I'm tired of having to explain it over and over again....

I like that to think that I'm a pretty cool dude. Like I said before I work in two guitar custom shops and I play in a band (bass). For the most part I'm pretty easy going. I've been told I'm big teddy bear (I'm 6'6" and kinda fat, so yeah I'm a teddy bear lol!)

Well that's my story, I'm going actually make an effort to be involved in this forum. I wish you all a good day.

Hello all– so what brought me here, was in another forum, someone mentioned “CRPS” and I had no idea what it stood for. I looked it up, and to my surprise almost every symptom seemed directed at me. Let me take you back 10 months ago.

Memorial weekend 2013, I was involved in a really bad ATV accident; where I sustained high-energy breaks. I had two very displaced breaks in my tibia, and a very displaced fibula break. I had emergency surgery to fix my leg; which was an Intramedullary nail, and screws. 3 days later, I ended up deathly sick from an infection resulting from one of my incisions. Back in the hospital for 3 days, to get the infection under control.

During the next 6 months I had so much pain, which resulted in another surgery. After my last surgery I had experienced a lot of Achilles pain from taking some of the screws out of my ankle. Finally around February, unable to get out of this major exhaustion and pain, I decided to go in and get a blood panel done; which came back normal. I was told however, the extreme fatigue could actually be a reaction to the anesthesia, and it can last up to a year! Two doctors stated this, but I simply can’t find any info on it.

I’m going in to see my primary doctor next week, because I can’t live like this. I can hardly keep my eyes open, and the pain experienced daily has worn on me. I figured I would get others opinions and see if anyone has any ideas????

I really appreciate any information!

~Becca

Hey There! Sorry to hear about your accident. There's a possibility that it could be CRPS, but you are going to want to start seeing a pain management doctor to get an ABSOLUTE diagnosis on that. I might be over stepping my bounds but I think that you should know that CRPS has no cure. They only treat the symptoms which is ridiculous amounts of pain.

I think that you should also look up conditions that mimic the symptoms of RSD/CRPS. In the mean time, it couldn't hurt to start taking Vitamins. Specifically C (in large amounts over the course of a day, it naturally reduces swelling, don't take it all at once otherwise you'll just urinate it out, like 1500mg at a time maybe like 3 or 4 hours apart.) Also Vitamin B12 is good. My personal favorite are the cherry flavored ones. B12 not only boosts the metabolism but it's also good for your nervous system, also in the healing process to make new DNA for cells, I take that after every meal, but not after dinner otherwise you'll be up all night lol. Two others that help with pain are Tumeric, which I've only found in Indian food stores or online, they come in a pill form and I take one everyday in the morning after breakfast. and the other one is Stevia in the Raw. Put a couple of those packets in a pitcher of Ice tea and it can help with pain as well. Now Tumeric and Stevia aren't going to work right away, they both have to build up in your system for awhile before you start seeing any kind of results.

I hope this helps. I've had CRPS for four years, and it helps me, doesn't completely take the pain away but it helps.