Hello everyone, my name is Sue and I was diagnosed with CRPS last month. I fell down the steps at work and had an evulsion fracture of the navicular, had surgery June 30 to remove the fragment. I had my first Lumbar Sympathetic Nerve Block last Wednesday. Within 5 hours the ice cold temperature change, the color change and pain worse than before returned.

I have been researching alot about CRPS/RSD and would love to chat with anyone dealing with this as I am having an emotional as well as physical problem with this disorder.

Thanks.

Gina
Do you have a primary doctor that you could see in the mean time while you are waiting to get into the pain program? I can’t imagine not being provided the medicines needed to deal and fight this disease. If you don’t have primary get into a neurologists office because the issue I think is the fact that the doctor you was an orthopedic doctor and they don’t treat nerve pain very well. I would start there because any doctor that is familiar with RSD knows there are many other medicines used to treat the symptoms of RSD than just Lyrica.

I'm 56 yo and have had TOS, RSD, CPS and a host of other things for about 13 years. I was injured at the Choice Hotels Call Center and permanently disabled by the treatment I got. I'm married to a wonderful man who stayed with me in spite of my injury and my change in personality because of the pain. We have a small ranch in Western Slope of Colorado. We have 1 dog, 3 cats, 2 tanks of fish, wild quill and pheasants and tons of wild rabbits.

I'm also a veteran and refuse to turn over and quit for these jerks at wc. They picked the wrong person to screw with. I'm like a pit bull. You kick me I go for your private parts and bite down. the more you kick me the harder I bite and if you kill me you'll have me hanging from your body until I rot away.

I'd just gotten to the point where I was so tired I hadn't been as active in the WC movement as before. That changed with this request for a new IME just 3 months after the last one. Don't they know to let a sleeping dog lie????

Hi everyone.

I think I got a firm diagnosis of RSD this week... well, I did from 2 doctors and have from about 6 docs before. The problem is that my pain management doc does not think I have it. He's the only one. I'm basically convinced that I do. My pain doc says that I have nerve damage from a surgery almost 3 years ago. I hate that I want everyone to agree on a diagnosis and plan of some kind. Anyway, I'm new here and don't know if this is where I should post. I have a question for any RSD people... can RSD be in a little toe only (a bit of the foot, too)? My pain doc thinks it must be in a larger region, thus the name complex regional pain disorder. I had a test by a foot doctor this week and I'm convinced and he is convinced that I do have RSD. I had 3 lumbar sympathetic blocks 2 years ago and the pain doc that did them said that my positive response to them was absolutely diagnostic of RSD. I don't know who to believe. I know that people can see many doctors to finally get diagnosed, but it's hard to accept because I had just met with a doctor in another city who could do an amputation of my toe and part of foot and he thought my pain would go away. I was so thrilled. But then the docs here said that "No... it would make everything worse." I'm so discouraged by all of this and have close to no support of any kind. I have a very strange question, but do any of you talk to each other by phone? I so wish I had someone to talk to by phone that would understand the pain. If anyone else wants to talk, let me know. Thanks for reading this.

Hi! I'm Robyn, I'm 39 and live in Maryland. I have 3 delightful yet sometimes devilish children, a wonderful supportive husband and 3 goofy boxers. I've had back and neck pain basically since high-school. It escalated as the years went on. Finally over the period of a 3 month time frame, the pain in my lumbar was way more often then not. Suddenly, while at the beach on vacation over the July 4th holiday, I stepped out of bed and had a incredible pain in my lumbar region that took my breath away. I waited a few minutes, took some ibuprophen and did my scheduled 2 mile walk. I popped the motrin like candy that week and just figured it would go away. By the end of the week, I woke one morning and realized my big toe and a portion of my foot were numb. I didn't really think much of that. By the end of the day it was numb up to my knee and again, I just let that go. I have a high pain tolerance and as mother's often do, I put myself on the back burner. Within days I started to realize I was tripping a LOT and that my left foot wasn't really working. I still let it go thinking it would get better. Finally I decided I should maybe see a chiropractor (which I had NEVER done before). I called and explained the loss of the use of my foot and made the appointment. Over the course of 4 appointments I mentioned everytime that I really wasn't walking normally and the pain in my legs and lower back was worsening. She stopped working on my back but continued my with my neck. Finally the next time she asked me to walk and she immediately sent me for an mri. The next day she said she couldn't touch my back anymore and that I needed to see a neurosurgeon. She continued working on my neck which was feeling worse with every session not better. I called the neuro and my appt wasn't for 4 mo. so I explained that the chiro believed I needed to be seen immediately so they asked me to send over my MRI report. Within the hour they called me back and I had an appt. the next day, a Tue. When the Neuro saw my MRI he was alarmed because apparently, a LARGE disc fragment had broken off and slid down my spinal canal and was pressing on nerves. The surgery was set for 2 days later, in August. I stopped seeing the Chiro because of my worsening neck pain. An MRI showed that I needed a cervical fusion for that, I had that done that Oct. My lumbar continued to be a pain issue and I then had an epidural injection. It lasted 7 days. I had a second injection (that resulted in an immediate sever spinal headache and major drop in blood pressure, then an emergency blood patch). That injection lasted 5 days. Finally, I had a lumbar fusion with instrumentation in May. My pain hasn't gone away and I'm extremely frustrated. I had 2 rhizotomy's, one on each side in the past month. I am actually in more pain now then ever. I can't explain how frustrated I am with this entire thing!

Hello everyone,
I just found this site and I'm looking for some advice or sugesstions. I'm a social worker and was injured at work when one of my clients had a mental breakdown and was running in traffic. I put my arms out to block him getting hit by a car and he ran into my hand, tearing the tendon off the bone. The initial diagnosis was a sprain and I had to convince the doctor something was really wrong with my hand. Surgery was delay because of that and recovery had been slow and painful. I have never had a panic attack in my life before this, but the ongoing medical procedures are overwhelming. I had my first SGB yesterday and was completely traumatized by it. The block did not work and my neck and throat are very sore---and the pain in my hand is the same as before. I am scheduled for another on monday and I'm not feeling hopeful.
I really would like to get a break from pain, stress, and worry long enough to get some sleep/energy back. I'm open to any help or suggestions....thanks

Hi!
My name is Tina and new to this site, I was diagnosed with RSD 5 months ago in left leg. However I suspect I have had this condition for years. 5 years ago I was hit by a car while walking across a crosswalk sustaining a left shattered shoulder and left knee injuries. Went thru 9 months of torturous PT only continuing to worsen ending up with a torn rotator cuff that according to xrays and doctors I did not have before PT. My shoulder is frozen and still very painful to this day and left leg severly swollen, painful, and also unable to straighten. It has now spread to both legs, arms, wrists and hands. My quality of life has changed dramatically from a very active, physically fit, and social life to struggling to move, pain filled, and isolated exsistence.
Thankful to all of you for this site! I'm sorry any of you have this RSD stuff, but so greatful to find I'm not crazy and alone. Your stories have given me encouragement and hope. Again Thank You!

My sister fell off a ladder on 09/07/09 and broke her shoulder and arm. She saw an orthopedic surgeon and he said she was healing quickly and that he wanted her to start physical therapy. She started therapy but instead of getting better, the pain got worse and worse. She kept telling him that something else was wrong because her hand started swelling and changing color and now she has difficulty using her right hand. She is in constant, severe pain - can't sleep or eat. Her primary care physician thinks she has RSD and she will get her test results tomorrow. She is a flight attendant and the mother of two teen age boys and this has brought her to her knees. Does anyone know of any doctors in the Phoenix, AZ area who specialize in treating RSD? Our family will do whatever it takes and travel out of state if necessary to get treatment. Do you start with medication or nerve blockers?

Hi :]

Well I am a 17 year old senior in high school and I was diagnosed with RST or CRPS 7 months ago. It all started in January when my foot was numb and I got up and some one pushed me causing my foot to bend in a abnormal way. It hurt a lot, but within 3 months it was better and I maintained walking on it throughout everything. Once it was better I still felt pain, but my doctor said it was just because I had flat feet. During the summer I started my color guard practice which involved ballet, running, jumps, etc. I was practicing for more than 5 hours each day and I still felt this horrible discomfort, but I went along with it. When camp time came it was 18 hours straight of non-stop dancing and running and I almost lasted two weeks.

The first day of away camp, after everything, I could barely walk. The pain was awful and the slightest touch caused me to flinch. I went to the ER and they said I had tendinitis and that it would be better within a week. So I got some crutches ( for the first time ever) and continued learning my color guard routine. I really couldn't stand the pain, but my coach told me I should try to join in because if I didn't, I wouldn't be able to join them in the Fall and I would be too far behind. So following his orders...I went to the extreme and didn't use my crutches and followed along. This lasted until day three of camp when I collapsed and couldn't get up. I told my coach I would have to sit from the sidelines and wait it out.

My foot was huge and purple before I ever went to the Er so now, you can imagine, it was the worst I had ever seen and I had this constant pain. When camp ended and I went home, I went to the doctor and she said I probably had a small fracture in my foot and I had to wait 3 weeks until I could go visit my new Orthopedic doctor. So I was still on my crutches and I toughed out high school and when I went for my first visit to the doctors, he told me to get an X-ray, MRI, etc but he believe it was RST and he wanted to make sure nothing was wrong, so I got everything done and everything came back fine. I had to go to Physical Therapy now.

I went to PT for over 3 months and although it was painful, my foot got better and I could actually touch it with a tissue- which was impressive. Still, A lot of things bothered it. Aside for the constant pain I had, it was always cold, my wrap made it sting, and I couldn't sleep because every time it touched the bed, I would feel this awful pain and instantly walk up. Over these 3 months I went from both crutches to one crutch and then a walking boot with an ankle brace. Walking without anything lasted a good..4 days because after that, that awful pain that I got the first week of camp came back and it was worse than ever. My PT couldn't even touch it or put anything hot or cold on it. My Orthopedic doctor thought it was time to go to the pain center.

Its was November by then and now I could barely walk on it and I was back on my crutches. During the duration of the month I got two sympathetic nerve blocks. The doctors plan was to give me one every week until the pain was at a good level and then spread them out. The first block I was completely out during the actual shot and when I woke up, my pain had subsided a bit ( on a scale of 1-10 probably a 8), but once I touched the floor that blaring 10 came back and stayed all week until my next shot which was the following week. The 2nd shot didn't go as well for me. It was on the 23rd of November and this doctor liked his patients to be apart of the actual "shot" and he got that from me. I felt everything and heard everything the doctor said and once I got the shot not only did my foot feel worse, I now have an awful pain in the lower part of my back ( lumbar region)< where they gave me the shot>

The doctor believes it was because my nerves aren't working well that I have this awful pain in my back and now I am in a wheel chair. Aside from that I can't go to school because of this awful pain and my medications make me sleep through most of the day( but they don't give me relief). Tomorrow will be my first time going to school with this much pain. Now I have to wait until Monday and I am hopefully getting either a Tunneled Epidural catheter or a Spinal Cord Stimulator.

So this is my story that is still continuing....and will hopefully have a good ending :]

Thank you for reading <3

I am able, I am weak. I am some strength, I am none. I am being, I am thought. I am all things, said and done. I am born, I am died. I am dust upon the roots. I am grace, I am pain. I am labor of willed fruits. I am certain, I am doubtful. I am desperate for solutions.
I am a teenager suffering with Reflex Sympathetic Dystrophy or as I call it, RSD. You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain matters.
I need to tell you several things, including what I have learned from having RSD, but first I am going to tell you what it’s like to be a teen living with RSD.
Everyday, the average teenager wakes up, gets dressed, goes to school, talks to friends, participates in sports and other activities, goes home, does homework, and then goes to sleep. However, the RSD teenager is not able to do these things. Everyday I wake up and the first sensation of the day is pain. I get dressed slowly because clothes and socks are such agony to pull on against the skin. School is a blur and I go tiredly home since I can’t participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside my body. Pain wins… sleep loses.
Are you beginning to understand me yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misunderstandings…
RSD kids rarely look sick, maybe tired, but not sick. Please do not make comments such as, “ but you look like you feel better!” When I feel better, I will say that I feel better. Also, remember that like any other teen, I want to look nice I don’t want to look sick.
I have also received remarks like this, “ well you can’t be in too much pain if you’re still smiling!” Now, let me ask you this; have you ever been sick with a cold or flu? You are probably thinking about how grouchy and depressed you were in the five-day span of that cold. However, most of us with RSD have been in pain seven days a week, 24 hours a day for weeks, months, or years. I cannot be depressed all the time. I try to be positive and happy for my friends and family, even though there are times that I’m not as happy as everyone assumes.
I would like you to understand that RSD is a neurological disorder, not a psychological disorder. Remember that while depression may occur after RSD and might hinder recovery, depression does not cause RSD. Also, being sad or depressed after the onset of RSD does not mean that any of us are crazy… wouldn’t you be discouraged if you spent every day, every hour, and every minute in pain without ever knowing when or if you will recover?
Please don’t expect me to act the same and think the same as I did before RSD. Constant pain can make me annoyed and sometimes I get frustrated easily. Meds can make me drowsy, dizzy, or might give me headaches. I might miss school for doctor appointments or physical therapy. When I do come back to school I am often tired, so if I can’t carry on a conversation or concentrate in class, please try not to get impatient with me.
Have you seen me walking? Or have you seen me with shoes and socks on? Please don’t ask me absurd questions like, “ does that hurt?” Of course, it hurts. It hurts so much sometimes that I don’t think I can bear the pain anymore and I wish that I could just curl up and die. Please understand that I have to do things such as trying to wear a shoe or sock or walking to get even a little better. I know I have to do these things, but it is extremely painful because of the hypersensitivity. Please don’t act like you understand everything about RSD because you don’t. I don’t mean to sound so harsh, but reading an RSD brochure or looking through an RSD info site doesn’t make you and expert in pain until you have experienced it. Unless you are and RSD’er, please don’t try to keep offering me recent advice or a “miracle cure.” I understand you want to help me, but only I know what helps me and what hurts me.
An RSD’er once said that sometimes with RSD you have to take two steps back and one step forward. This statement holds a lot of truth to it. RSD is unpredictable and none of us who suffer with it ever know how we will feel from day to day. I think that is the hardest thing for anyone to understand though, except for those of us who suffer with RSD. Everyone thinks that once we get on the road to recovery, we should stay there… but RSD differs greatly from a football injury or a ligament strain and we are going to have many setbacks. One day, I might be able to move around a lot, the next I can barely get out of bed because the pain is so bad.
Don’t ever accuse me of not wanting or not trying to get better. You’re not with me all the time and you don’t know how much I have tried and continue to try to get better. Small things like trying to desensitize my skin and letting water from a shower flow over my leg or just lying my foot on the ground is an achievement for me, but of course no one ever sees that. They just want me to be able to jump one day and be healed. You don’t know the pain, the loneliness, the fear, or the nightmare RSD is. I remember the first time I was diagnosed with RSD. That was horrible.
It all happened late one night at homecoming in the seventh grade. I was running around having a great time watching football, and being with my friends. Then something happened that changed my life forever. At first it felt only like I twisted my ankle, then the pain spread up my leg to my knee. The pain was so bad but I didn’t want to admit defeat so I kept playing and trying to have a good time. I didn’t think anything about the pain until it got worse and worse, so bad I could barely stand. I was stupid. Instead of going home I stayed for the bonfire that was after the game. Then after that I got a ride with one of my friends and went home to see if rest would make my leg feel better. In the morning the pain was worse than it was the night before. I couldn’t go to school and my mom took me to the doctors. I couldn’t put any pressure on my leg so I had to hop everywhere until I got a pair of crutches. The doctor thought it was just a sprain like I had, so he wrapped an ace bandage around my knee. After a few days the pain was still just as bad so I went back to the doctors. Now they thought maybe it was broken so I was sent to the hospital to get X-rays. There was no break anywhere and that is where the RSD ‘theory’ comes in. I had to have a ton of tests and all of them read RSD. That was when I was diagnosed with the worst possible neurological disorder a kid could get. Life was not the same anymore. I blamed everyone for my problems even though they had nothing to do with it. But then I learned that my problems were mine and mine only. I learned that I had to be strong in order to keep my life semi-normal. It was hard but here I am today, I am resilient, a survivor and determined not to quit fighting…
And what I really need is for you to understand me. Remember it is still me inside this body filled with awful pain and I still like laughing, talking, and doing ‘normal’ things. Remember that I’m still me even though I have RSD.
I have learned that every child with RSD has a story almost exactly identical and if his or her name weren’t there, the stories wouldn’t be able to differ much. I have also learned that life should be taken in stride. So, my time on earth, on fate depends. But all that happens in the space we are meant to live depends on me and choices I face. For better or worse they’re mine to make. So my time on earth will be well spent and when I leave this world I’ll leave with no regrets. And I will continue to learn about what RSD teaches me…