Good morning to all. I'm a newbie. Been lurking for a time, but figured I might as well jump in.

I was in a serious car accident on 1/13/10. Only injury was to my left leg which took the brunt of the impact. ER Dr said go home put it up, go back to work on Monday, it is just a bad bruise. I've had bruises before, never anything like this pain.
Because I was (1) driving, there is car insurance, (2) working, worker's comp, (3) gov't worker, so I get to deal with the US Dept of Labor. And right up front, none of them give one whit about me. But my paperwork is out of control. Because worker's comp trumps car insurance, WC is in control and eventually will be reimbursed for all expense, which won't be much because they won't approve anything.
I knew from the beginning something was wrong because of the level of pain I was having. I went to the Dr every week. Always another solution. Wear the white support hose, I don't care if the pain of having them on is excrusiating, wear them anyway. You should be wrapping it. An ultrasound two weeks later showed my leg was full of blood. It will just absorb back in, no treatment necessary. You shouldn't be wrapping it, that will increase your pain. If you were hungry enough you could go back to work.(The fact that my leg was twice as big as the other was lost on them somehow.) The finally said 'let's try PT' and to my amazement, I think I got the world's most wonderful therapist. He actually said "wow, you have some issues here!" That in itself was therapeutic. After a month of deep massage, I was amazed at the remarkable advancement I had made. One day back to work and I couldn't even tell I had a knee.
Take ibuprofen and use heat pad. Don't take ibuprofen and use ice pack. Don't wear jeans(ha, I didn't want to wear clothes or shoes). Keep it elevated, which I'm pretty sure is impossible when you are working. I've never been on extended worker's comp, and the supers at work didn't know anything either, so I used all my sick leave, most of my annual, many unpaid days.
I asked for a referral to an ortho dr. Took 3 weeks for approval and finding one who would take US Dept of Labor patients. MRI 9 weeks after the accident shows no ligament or tendon damage, but he said if you've been off of it for 8 weeks it would have healed by now. Go to PT, strengthen that leg up. HA ha ha. One month of torture, but my therapist was very good at avoiding anything that was too painful.
Back to the doc, now 5 mos since accident. I'm sending you to a neurologist. I think you have CRPS. No one knows the procedure because I'm new at this and so are they so we call to get approval. The person(that's as kind as I can be) right up front said, "You ain't goin' to see no one, until I say you can." It was 8 weeks before I saw a neurologist and 4 bureaucrats before the last one said "You don't need anyone's approval for that."
Ok, fast fwd. It took 4 weeks to get the testing approved, amost an act of congress to get a nerve block, and now it has been 14 weeks and the Dr has received NO payments. Despite continuous calls on procedures, corrections, hoop jumping and our following instructions to the T, no money yet.
I've gone from one flare a week, to continuously swollen BOTH feet up my leg about 5 inches, lobster red/and or black, a flare a day, my bp is far from acceptable(yesterday, I was having to swallow to equalize the pressure). I had a cat scan on Mon, I have a nerve block scheduled on Thurs. The doctor said we are not fighting WC anymore. Just charging my insurance. But I really don't care, I've asked my husband twice this week to go downtown to the corner and see if he can find anyone who's selling morphine, if not just buy a chainsaw and get these things off of me.
I did appreciate the tips thread I followed yesterday. I'm pretty much no shoes, and one pair of hospital socks of my hubbies. I'm going out to church, but that is it. Well, I am going to Bible study, but no walking, but with my BP so high, I'm confined.
You all know all of the symptoms. I feel the impulses in my leg pretty much all the time, but now both feet, and oh, yeah, my thinking is going to pot, but I can't get any witnesses to the fact that it wasn't before this. My son, and Iraq war vet got married in July. His mother(me) didn't understand that stress was a big trigger and spent a large part of the day in a bathroom crying out to the Lord asking why was I feeling like I was panicking(I'm not a panicker). Now I know better and am avoiding most stress. I'm not working, I'm the bread winner. I'm hoping they get it figured out before I run out of resources. I'm beginning my 7th decade and I had a couple more years before I retire, but that was going to be when i found another job. I'm gettin a lawyer this week, and hopefully soon getting out of the WC, US Dept of Labor fiasco.
But God is good. I have a husband who smiles when I ask for the chain saw or the morphine from the corner. I have 10 grandchildren who create so many endorphins they drip out of my eyes many times. I'm happy to be breathing. OK, breathing and not walking. I've memorized every sudoku puzzle ever printed I think, I have my own DSI(makes me a cool gramE), I have lots of time to read and study, and I love 1000 pc puzzles.
Thanks for offering me a place to go where I don't have to try, over and over, to explain why or what I'm feeling. They say - Just put your shoes on, Just do this, Just do that. I smile and Just let it go over my head.

Hi, I'm Ky and I was diagnosed with CRPS in December of 2008. I was involved in a car accident in December of 2007 in which I injured my left knee. My first doctor, an orthopedic, told me it was just a bone contusion and sent me to physical therapy and told me in March of 2008, that I should just wear volleyball pads if it still bothered me and that I was fine. Not believing him since I was still having pain and the bruise was still there but slightly smaller, I went to yet another orthopedic doctor, who finally did an MRI and then scoped my knee in May 08 to repair some damage. The bruise finally faded 2 weeks after surgery. He sent me on my way after surgery telling me if I still had problems to call.

In July of 2008, at my niece's birthday party, a friend decided it would be fun to pour water over me and instantly I noticed I was swelling up, turning colours and the pain. My sister took pictures and I got an appointment with the doctor the following week, in one look at the pictures he told me I probably have RSD and I need to go to pain management. Since it was a Work Comp injury, they through a fit and stopped paying everything. Thankfully my car insurance kicked in and I managed to get in in December of 2008 where I officially got my diagnosis of RSD. That doctor (whom I don't recommend in North Dakota) put me on Gabapentin and told me if I take this for a year I'll be cured.....eventually I switched doctors because I felt he was feeding me full of crap and now I'm with a doctor I'm relatively okay with at this moment. Just a few months ago, though, we noticed my foot and the rest of my lower leg starting to swell and turn colours along with my knee, we believe it's spread downwards. I've been slowly losing my hair on my leg. The initial injury site is pretty much completely bald. My memory stinks for being 28.

I'm currently on Gabapentin (2700 mg a day), Cymbalta (40mg), Tramadol, Naproxen, and Baclofen for my pain control. They recommended the Spinal Cord Stimulator for me months ago and I was going to do the trial but then found information after I had to postpone due to being sick that it really isn't this great invention that my doctor made it out to be. I still have lots of bad days where I can't walk without screaming but I'm kind of at a loss on what to do next. I'm now afraid to try the stimulator after what I've read and my doctor tells me narcotics/opiods don't help RSD/CRPS pain and keeps telling me I should try the stimulator. She says I can't work and I've filed for disability. However, I've been denied twice already and I'm now waiting for a hearing date. I'm hopeful I'll get it this time around but we'll see...I've already lost my house and my car from having to wait and it's destroyed friendships and a relationship but things will get better

Sorry it's so long and hoping everyone has low pain day

First of all, I'd like to thank all of you for this group- Even though I have just joined today, you've been my cyber "home away from home" nearly 24/7 since hearing the term "RSD" grace the lips of my podiatric surgeon a week and a half ago.

I first heard the term reflex sympathetic dystrophy mentioned at my six week post-op visit after a bunionectomy w/osteotomy on my left foot. At that appt, my foot was still incredibly painful, and apparently the pain I was still in was much more than it should have been at that point. It was also discolored, and "splotchy" (for lack of a better word), swollen, and freezing cold to the touch. My doctor calmly said that these things concerned him, and that reflex sympathetic dystrophy could be something to be considered, and that I'd be scheduled for an MRI (although the xrays looked good, just to confirm the bones were indeed healing well), and for a consult with a neurologist colleague that he's consulted with in the past.

Of course, I asked him what this RSD business was all about, and he very briefly gave me the gist of it- but tried to keep it low key (I imagine to keep me from panicking... which is precisely what I did when I got home and google'd it, but that's my own fault). I started losing it at this point...what I was reading about RSD was devastating to me, and I kept thinking that I was overreacting, "there's no way this can happen to me..!" I prayed that the MRI would come back showing something wrong- hoped to God that the pins would show up to be too long, but they weren't. (My mind's dialog: one step closer to RSD confirmed dx...)

Then I saw the neurologist, by this point (just a few days later) my leg was starting to turn blueish too.

*Note: the discoloration really only happens when my leg has to be "down" for more than a minute or so...such as sitting in a chair, or ESPECIALLY when taking a shower, or when sitting on a doc's table, w/legs dangling- makes the leg look like it's about to be amputated due to hypothermia! but once I'm back in bed, or somewhere comfortable that I can prop up my leg, the color comes back within minutes- pain stays, unfortunately.*

Anyway, back to topic: at the neurologist, he notices my leg discoloration for the first time (was limited to foot prior to this). He also agrees that it is likely RSD / CRPS I (they seemed to use the terms interchangeably). He started me on Topamax, (both for the RSD and also to help my long history of migraines). He also ordered an EMG/NCV study to rule out any other possible nerve damage. I also prayed for that to come back with something wrong- but again, it was normal (or at least it was as expected for RSD). Seemed to be an awful, painful test for nothing (but that's for another thread).

So that brings us to today. I saw my neurologist again today- I say "my" now, because the RSD is now confirmed, and I will be seeing him for that, and he will also be taking over my migraine treatment as well (as there is some evidence that there are links between RSD and migraine, at least as far as how they function, it's best to "attack" them together).

As a means to keep the migraines at bay, while we battle the RSD, he administered a round of trigger point injection blocks in my neck (this was no fun, but if it works, it will have definitely been worth it!) He also prescribed Neurontin- to take at night to help w/pain and sleeping, (as even the vicodin doesn't cut it at night), in additon to the Topamax that he started me on last week. From what I've read, Neurontin and Topamax seem to be fairly common in the RSD world, so I'm hoping the side effects that I've heard/read about them get better...they can't be that bad if so many people take them, right??

Anyway, if you've gotten to the end, I'm sorry for rambling- and thank you for listening!

I have been so scared since hearing about the possibility of RSD...and since the dx, I've just sort of been numb. I don't know what to think about much of anything anymore. And even my closest friends (and family!), as much as they want to "be there" for me, they just don't get it, can't understand it at all... the few I've told- their mind's started to wander, and I'm pretty sure they think I'm nuts and/or being over dramatic. I'd think I was nuts too, if it weren't for all your posts...so again, thank you to all who've written before me...it has made this very dark, scary time for me a little bit brighter.

(and as you know by now, I'm brand new to this- so any suggestions or tips, please reply, or feel free to email me (it should be on my profile) thanks so much!!)

I have posted on the behalf of my Sis on the RSD thread. Her name is Terrie, and she has dealt with RSD now for many years. It is serious business and you should keep on top of it with your doctors, working to manage it the best you can, as for Terrie, now she is on a strong cocktail of morphine which is intended to help her keep at peace the best she can, and all of this started years ago with a knee surgery.

Praying for you, and hoping the best,
Mark56

i've battled fibromyalgia since i was twelve but only diagnosed a few years ago. being fed up with the weight that the lyrica had packed on i started jogging in april. a few days later i could bear weight on my leg. i pushed on. it got worse. i was working in a nursing home. i spent all day walking, lifting and squatting and the pain was unbearable. finally the dr told me i had pulled something. i got a full three days to rest. then back to work. it got worse. i'd slip off by myself and cry or vomit from pain. co workers said that i needed to suck it up. i insisted that the pain was worse so my dr sent me for an mri. a week later i'm told that i had an inch wide fracture in my shin. so i had to stop working. after a few months it just wasn't healing right. i wore a bone simulator. my leg just hurt and felt weird. btw this whole time i'm in so much pain i'm taking lyrica and tylenol. that's it. i endured a nerve conduction study with a jerk who yelled at me because i couldn't flex my quad with a needle shoved in it. nothing. physical therapy, nothing. then the dr just shrugs and says if we leave it alone long enough it'll get better. so in october i come crawling back in extreme pain with hot and cold water feelings and creeping. he suggests a nerve block. it worked for about four hours. then the pain came flooding back. he has given up on me and refered me back to my family dr. she has me set to see a nero but they pushed it back another month. now its spreading to my back in an old work injury and creeping down my arm. the same side that i'm forced to use a cane on. now the dr and the pharmacy can't work together to get my lyrica. i know ppl that whine about a simple strain and they throw pills at them. i'm in so much pain that i cry and loose my temper and can't work and they won't give me anything. i'm coming unglued. i need a place to be understood.

Dear Fairlight,

So sorry to here you are suffering. It sounds like you just might not be with the correct doctors. My suggestion is to try and get to a Pain Managment Facility, possilby with a big teaching hosptial. I see you live in TN maybe Vanderbelt in Nashville I believe they are medical teaching facility.

I hope this helps. Feel better.

Gabbycakes

I am new to this site and new to the computer so I'm not sure what I am doing. I'm kinda lost. I found this site and started reading about all these people with rsd and just felt I needed to join in and ask ?s too. I read so many of your stories and so much of it I can relate to. I was treated like a mental pt, and the pain was not acknowledged for the longest time, just more and more clonidine to bring my blood pressure down. I was finally dx the end of 2003 after suffering for almost a year. My husband would take me to the er and they would shoot me up with something, and send me home. I would sleep on the way home, and my husband would carry me in and then as soon as I woke up I would be screaming in burning pain. After i was finally dx, I was put on avinza 30 mg 1x day---baclofen--clonidine--and neurontin. The constant constipation from the avinza was the worst no matter how much fiber and stool softners, and magnesium that I took. But the pain subsided, and after about 4 months I actually started functioning substantially. About 8 months later I started being jerked awake, PM dc said it was the baclofen so was weaned off of it. The jerking stopped. was weaned off the neurontin. Any way was weaned off meds, using ativan, had a adverse paradoxical reaction to it, and it was dropped ct switching to massive doseages of benadryl. I started having horrible partial seizures, couldn't sleep, walking the floor day and night, so dr gave me xprexa, said it would help me sleep, made me worse, then trasadone, I'm still having violent jerking thrashing partial seizures and cannot stop moving, as when I do my body starts jerking me violently I still cannot sleep, getting only about 2 hour a night if that. I' literally going insane from no sleep. I tried the baclofen again but had a bad reaction to it, maybe because of the protracted benzo withdrawals and the gabba situation. I do not know what this is or what to do. PM dr says that it is akathisia, neurologist says just drug repercussion and should heal, and they are all trying to give me antidepressants, and I know that akathesia is reaction of dyskinesia from such so am confused. In the meantime, because of all the trauma and no sleep my body is trying to burn again. My cns and metabolism is in over drive, as i cannot slow down, rest, relax or sleep. I was put back on neurontin but started moving uncontrollably, as my head would be pulled backwards and my mouth would open wide and my tongue would stick out. I looked up information on pubmed and there is a case of neurontin causing a condition called oculogyric crisis. I asked my neurologist about it and she said that it was possible, so am weaning off of the neurontin now and mybe a little too fast. I'm still on cloniding and almost off the neurontin. In the meantime, still no sleep, and one violent jerk-spasm-thrash-yanking seizure after another. Is this the rsd? Any suggestions on what to do? elmarita454

Hello-
I'm new to chats and RSD. I was diagnosed in 12/10. I had a crush injury to my right wrist and the pain has never gone away. Most of the time I can "feel" all the bones in my hand and shoulder (if I close my eyes I can picture the bones/joints). I also have pain in the arm (feels like it is being squeezed). I have faint pains in my left arm and my legs go numb often (feel heavy and like they can't hold my weight). There are times when I have pain on the bottom of my feet (pins and needles) and I have been having migraines for 2/3 weeks.

I have recently moved and my primary is questioning the diagnosis. It is so frustrating that I have to start all over again. Can anyone tell me if these are symptoms? I have no history of migraines or other health issues.

Life has not been the same since involving in the accident on 11/11/2009. Sudden sharp pain and burning pain has been keeping me accompany 24/7. Was given an official diagnosis Stating that i have Complex Regional Pain Syndrome (CRPS) type 2 on 05/10/10 almost a year later; by the pain management Dr. Since then visiting to the pain management Dr., pain psychology and pain physiotherapist has been part of my life. Used to be a foodie, enjoy hunting declicios food; enjoy cooking and get my family members to be my geninny pigs wahahaha...., gathering and partying with friend in night spot such as St.James or having BBQ session followed by mahjong session and traveling to Genting Highland to enjoy the cool weather, to gamble and most importantly able to speed driving at 160 to 180 throughout the trip^^. Now it's totally different, has been trying hard to regain my life my lifestyle with the management of my pain with a 30% plus improvement. It's difficult, it's tough...... Has been living in pain riding on a pain roller coastal. To be honest I have totally lost the interest of staying alive; don't even mention about going back to my old lifestyle. Pain medications I am taking did help to reduce my pain but there are side effects. Taking my medications after dinner I will starts to walk in a manner as if I am drunk and by 9pm plus I am being knock out by drowsiness, if I take the medication too late, I will be very stone in the morning till noon. Pain medications don't always wins the battle. If pain monster wins, I have to endure the excitement of pain till the pain dies off on its own for 4 to 5hours my emotions my thought will be totally controlled by this monster. The worst is when it gets so painful that my tears starts to activate suicide thoughts will join in the fun. I don't*know when I will be totally defeated in this war. Lol...... No life at all. I wanted encouragements from my family and my friends but I don't have the courage to open up. Every time whenever I wanted to open my mouth to tell my family members I ended up swallowing my words. Afraid to bring disturbance to them leading them to join my misery.

Hello all -

My name is Vicky and live in Cadillac Michigan. I was just diagnosed today with CRPS type 1. I fell back in January and was diagnosed with a wrist that was fractured in 2 places. Was sent to a local bone specialist. After 2 visits with him, he sent me off for a MRI. About a week later, he called me personally to tell me that I had a torn ligament and he was sending me to Traverse to a hand/wrist specialist. This was about a month after my fall, and by then I was beginning to think that I was going crazy. My hand would swell, turn red/purple and my whole arm up to my elbow was on fire. It was bizarre, and I couldn't figure it out. This far in, it should not still hurt. Let alone hurt more then it did when I first fell. I was beginning to think that I was nuts. I would get comments from people about what a low pain tolorance I must have, even from my best friend. These are the same people that would mention that my hand was purple or red. I saw the hand specialist last week, and spent some time with him at which point he thought that the pain was from carpel tunnel, and wanted me to go for the nerve test. Meanwhile, I was asking my original specialist for a refill on my pain med (vicodine). I get a nasty message from his nurse yesterday about how this was the last time (please keep in mind this was the 3rd script at 30 pills per and 1-2 every 6 hrs as needed since the accident). And if I needed FURTHER narcotics that I needed to contact my pcp or the specialist. Here I didn't ask my specialist last week for meds. I was just trying to ride it out - thinking that one dr should manage my meds. That way there would be no confusion. It was like I was a drug addict. I type alot with my job, and yesterday (it wasn't the first but definitely the worst) day my arm was on fire! Nothing would make it feel better, I was crying - it was just awful. Today, I go to for my nerve test, and see a new dr. She listened, and examined me. At which point she proceeded to tell me that we would not be having the test, that I had RSD and the good news was that we caught it early. Now, tomorrow I am having the first in a series of 5 nerve blocks. Not to mention my mri did show some problems so now I still see the specialist, and have a new doctor. She told me this, and I started to cry because I really thought I was going crazy! She kept saying things like "remission" "agressive treatment" and so forth. Then I came home, and looked it up. Now, I am scared to death and freaking out about the block tomorrow. My other wrist hurts, and has been for a couple of weeks, thinking I was compensating and that was why. Not so relieved now that I have read a bit. More scared than anything. Wondering if anyone else has felt that way? Also, where would you go for real research and to get the facts. Thank you for listening to me. I appreciate it!

Vicky