This isn't really the sort of place I thought I'd end up, but here I am all the same. Something like 10 or 12 years ago I whacked a shin on a steel beam at work, lost feeling in part of my foot, was treated by a neurologist and eventually regained sensation and that was that.

Well on a random Sunday night (which I only remember was 5 years ago today because it was the Sunday night before my first anniversary) I came out of the bathroom and my husband asked if my ankle hurt because it and my foot were all swollen. It was sore, but it didn't hurt. Yet. I iced it and the next morning it was fine so I shrugged it off. Except that by evening it was swollen and sore again. I didn't waste time and got to the doctor first thing in the morning. He wanted x-rays, half my blood supply and sent me home to wait for results after talking about scary things like lupus. By that Friday he decided I had a completely clean bill of health, shrugged and sent me on my way. By then, the swellling was starting earlier and earlier in the day and I could no longer wear shoes, only flip flops and the soreness had progressed to pain. Still, he couldn't find anything wrong and sent me away.

I continued seeing doctors. I all but begged for help. My leg would swell all the way up to my calf. I feared my skin would tear. I cried myself to sleep at night, silently because I didn't want to bother my husband with my pain. Eventually we stopped sharing a bed because he has RLS and if he bumped me I wouldn't sleep the rest of the night because of the screaming agony. The pain spread through my hip, and blessedly stopped there. I feared it would just keep going. And the swelling isn't quite so bad anymore but it still swells every day, sometimes more, sometimes less.

I don't even have a life anymore. I haven't worked, not really, in years. I have a "job" as a substitute teacher at a tech college and work maybe a day a month. I can't even sleep in the same bed with my husband for fear he'll touch me. My memory is shot to hell. Sometimes I even lose focus in the middle of a conversation and forget what we were talking about. My vision is all sorts of messed up, bad enough that an incompetent neurologist who can't follow diagnostic procedures diagnosed me with idiopathic intercranial hypertension about a 1 1/2 years ago. I had asked (on the advice of my doctor) that neuro about CRPS. He looked at me funny and I said RSD? When I finally started speaking words instead of acronyms he was all yeah yeah... there's no way you fit the profile for that. My new neuro is the one who pointed out you can't diagnose IIH without a lumbar puncture. She has also just referred me to a pain specialist to confirm a diagnosis of CRPS.

So, it's been 5 years. I've found myself labeled with a somatizaion disorder in my medical records. I've had a doctor, to my face, tell me all my problems are anxiety related. (He got a piece of my mind right then and there, because I suddenly had a temper control problem.) I've cried in doctor's offices as I begged them to tell me what was wrong, I didn't even care anymore how bad the news was... I just wanted an answer. And now I'm just a ball of emotions. At first I was simply thrilled. An answer, at last. It isn't a good one, but all hope for a good one was long ago lost. But the hours let it start to sink in. I'm so mad, I went to doctor after doctor and I've been repeatedly labeled as basically crazy. If they had just listened to me and taken me seriously (would they have if I were a man complaining about pain) how much suffering could I have cut off with treatment? Mostly I'm struggling with how to find hope. I tried to get help, I was in a doctor's office in under 48 hours of my first symptom. I didn't stop going either. And now it's been 5 years without treatment. If the best hope is in fast and early diagnosis and treatment, I don't like thinking about how screwed I am.

I still have to wait for this second doctor to confirm it in a month. My new (awesome) neuro thinks it is but wants to be sure and says he's better suited to treating it because he sees so many more cases than her. But there is no other explanation, everything every doctor has come up with has been completely ruled out. Other than me being completely off my rocker.

Adalaide,
So very sorry to hear about your long years of suffering & wish you did
not need to find us here. But WELCOME! This forum is just wonderful
for help, peer advice, support, venting & UNDERSTANDING!

I was pretty lucky to get dx'd. in about 5 wks. but my RSD/CRPS started out
visually dramatic. I haven't had a remission but I do get relief from nerve
blocks, meds etc.

To start off, read all you can but please try not to dwell on worst case scenarios. I don't know what part of the world/country you're in but there's
a great website RSDHope.org. There's so much good info. there.
A good pain management Dr. & physical therapist can provide many options to help so don't give up hope just because it's been 5 yrs.
Again I don't know where you're located but many of us have been lucky to
find P.M. Dr.'s knowledgable about RSD/CRPS.
Also there's a video I like on youtube (it's very long) by Dr. Pradeep Chopra.
He is giving a seminar about RSD and it's worth it even if you can only watch small segments at a time.
Try to hang in there and we're here for you!

HI Adalaide,
WELOCOME to our group, as Az-Di said the people on here are just wonderful & Amazing people who are all more than willing to help weather its with info or support we all know what its like since we all have this demon. I myself have Generalized RSD (full body) June will be 10yrs for me I know all to well of the frustrations & bulls*** from doctors saying it's all in your head NO ITS NOT & your NOT crazy They ARE for not listening to you! I myself went 4yrs before I was finally diagnosed @ the RSD Foundation in Tampa Fla. At least now you have answers even tho it's not the greatest answer its at least a start. We all know exactly what your going thru since we have all been there & deal with it every day as well. I agree w/Az-Di also about doing research, learn as much as you can about it & feel free to ask questions on here everyone is really amazing honestly weather it's helping eachother out with info or just listening when one of us is haivng a bad day/week so you have @ least that as a positive I am sorry you have this demon (rsd) but if there is anything I can do, questions I can answer etc plz let me know take care & again welcome to our wonderful group!

Hi Adalaide, ditto to everything said by AzDi and Heidi. My surgeon didn't even explan what was happening to me. I had to figure it out for myself. My physical therapists are the reason I am able to walk today. Move the affected extremity as much as you can. Get into a pool too. I wish you wellness ~Lottie

Thanks. (I'm a Heidi too! It's such a great name. ) It's really helpful to know that I'm not alone. I have a super amazing husband, but my network of friends has dwindled to near nothing because of my inability to go out and do things like I used to.

I'm in Utah, so I'm not off in some no man's land. To the best of my knowledge I've been referred to a good doctor, but I don't have a high opinion of doctors. After it taking more than 30 years for a celiac diagnosis and now this, I never expect more than functional stupidity from doctors. It helps keep me from being disappointed and once in a great while I get to be pleasantly surprised.

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.