ToGalena Faolan, I'm so sorry for all the discouragement you've had with Drs. I also had a very long time. We moved from Oregon to Ariziona. I had
Drs. in Az. not giving good treatment and diagnosis so I flew back to Oregon to good Sport Injury group in Eugene. Dr. walked in room and diagnosed me in 2 minutes. followed by tests at the hospital. I have lifetime full body now.
I'm going to post longer after this on this thread. Sincerely, Loretta

My RSD journey started in 2003. We still don't know how I injured myself, but it was likely because my foot was too flexible, and I got tendonitis. I didn't get officially diagnosed for six months. After a year, my RSD went into remission. Now, though, it's back, and spreading. It started in my left foot, not even all the way up to my ankle. After it came back, it got much worse, and is now up to my knee.

Just so no one is surprised, I'm blind, and travel with a guie dog named Julio. I'm in college, majoring in social work. I look forward to participating here.

Here is my story. Kinda long, but a lot happened. So here it is.

I was a gymnast for 11 years and had just made it to level 7. On June 8th of 2006, I was tumbling and I landed on my face and hurt my right foot. My mom then took me to the doctor. Once there, they determined that I broke some bone in the the ball of my foot so they put it into a temporary splint and crutches until I could get in to see my orthopedic doctor. After a day or two, we got into the orthopedic doctor office. My regular orthopedic doctor who we had dealt with in the past and was an excellent doctor was off that day. We were scheduled to see a different doctor. He took some more x-rays and said that my foot wasn’t broken and gave me a foam shoe and said to get off of the crutches and out of the shoe soon. He wasn't very nice. Anyways, the next day, my foot started turning black and blue and it was even more swollen and it started to hurt more than a break should hurt (rsd pain). It was also ICE cold. It wasn't hypersensitive at the time. We got back to the doctor and asked for my regular orthopedic doctor. He wasn’t there so we saw another doctor. He said that it was broken and he put me into a cast. He said when we came back in 2 weeks, my doctor would be back and we could see him.

Two weeks went by and we went back to see the doctor. My doctor was finally there and said that it looked as if my break had healed nicely, as if it was never there. He gave me an orthopedic camel walker boot with an air pump and said to use that and the crutches as needed then slowly wean off of them. Then he said for us to come back in a month. I started school then again after the summer break and I forced myself not to use crutches, but the pain got the best of me after a week and I resorted back to using them. My foot also began experiencing hypersensitivity to wearing shoes and rough socks so I went back to the ortho boot and fuzzy socks. The ortho boot hurt still, but I was able to tolerate it and it hurt a lot less than everything else.

After a month, I was still in the boot and on crutches. My doctor wasn't there, but we saw his nurse practitioner. My dad brought me this time opposed to my mom. My mom knows that we are not supposed to see her because something always goes wrong when we see her. I tried telling my dad that but he insisted on us seeing her. She got angry at me for being in the boot still and still on the crutches. She said she wanted me to walk out of here without crutches. My dad said okay and put them in the car. I felt as if I was going to die when walking out to the car. I stopped after 20 feet and just sat down and stayed there until my dad brought the crutches to me. It took 20-30 minutes and he finally gave in. We then went to see my mom and she was furious at my dad and the nurse. She told me to still use the crutches if needed, which I did. She also called the doctor back and told them she wanted to reschedule immediately as soon as my doctor came back. My mom took me this time and we found out the day of my appointment that I was scheduled with the nurse again. My mom told them that we were rescheduling again so they fit us in the next day. When we came the next day, the nurse saw us and asked why we had rescheduled and my mom told her that we wanted to see the doctor. We saw him and he realized that something wasn’t right with me because he knew from the past that I bounced right back from an injury. He scheduled me for an MRI within 3 weeks. I also started physical therapy 2 days a week for an hour a day, but it didn’t seem to be helping so we stopped after 2 weeks.

After the MRI results came back, they were abnormal. My doctor said that it was either arthritis or RSD. He believed I had RSD, but I had to have a blood test to rule out on of them. After the blood test, the results came back negative for the arthritis, so I was officially diagnosed with RSD on September 23rd. I then started physical therapy again with another person.

Slowly I began declining. The hypersensitivity was greater and the pain was becoming more severe and it was always cold and hurting more than I could ever imagine. I still went to the gym, but not as often. When I went, I would do stuff that didn’t involve my foot. I started physical therapy again with another person. He was okay.

Then by the beginning of November, I started to feel the same pain in my left foot. It wasn’t as severe, but it was getting harder for me to use crutches. I temporarily stopped the therapy also. My arms also started hurting, but I didn’t want to sound like I was complaining too much. I thought my arms were just sore from being on crutches for about 5 months anyways. I told my mom about my left foot and when we went for thanksgiving to visit my grandparents, we got their old wheelchair. Unfortunately, it was made like 50 years ago and it wasn't exactly the right size or in the best shape but it had to do at that time. I went back to school in the wheelchair and my arms seemed to not hurt so much anymore so I was okay temporarily. My mom called the doctor back and they scheduled me for a lumbar nerve block. That ended up relieving the pain in my left foot, but it made the RSD in my right foot more severe. My left foot was never as severe and I never experienced the hypersensitivity though. I was able to revert back to the crutches.

After letting my mom know that the nerve block made my right foot feel worse, she called back my doctor and he said that the only thing he could do for me temporarily was to make a SAV cream to apply to my foot. He prescribed one and I got it within a week. I started applying it once a day. I stayed on it for a month or so. I also started therapy again. It was a lot harder than before. When I went back to the doctor, I told him that the cream wasn't doing anything (no harm, but no help). He then prescribed me another one, this time for the circulation. It had a vasodilator in it. He told me just to put it on my right foot. The physical therapist I had been going to told me it might be easier if I just started going to a local place with a pool and then go to him every 2 weeks because his place was a far drive for us.

After the first day in the pool at the new place, my mom and I noticed I had a small red rash on my right foot. Because she is a nurse, she knew that vasodilators could cause rashes. She told me to stop using the cream and just make sure that the rash doesn't get much worse. She called the doctor back. He said to just keep an eye on it and let him know if it gets worse. He said don’t use the cream anymore. Over the next few days, I kept an eye on the rash. It slowly began to grow and then it seemed to cover almost the whole top half of my foot. Then my foot started swelling to double the size it was with the typical rsd swelling. I couldn’t get it into the boot anymore. With the RSD pain and the swelling and rash, my foot felt unbearable and I decided that if it didn't get better then I would want it amputated. We let the doctor know and he was out of town so they scheduled us the next day with the who else but the nurse practitioner again because she was the only person there that had seen my foot since being dx with RSD. My mom wasn’t very happy with that but since it was an emergency, she stuck with it. The next day, my foot was four times the size it was before and it had an almost blistered look on top of it. It was starting to all the colors of the rainbow. The nurse saw it and she saw it and said it was just a severe rash and it should clear up in a few days with prednisone and cream for rashes. She said I might need an antibiotic but she wouldn't put me on it unless it gets worse. I could even tell it wasn’t just a rash and I'm just 15. Anyways, I went back to school after that appointment my foot kept on growing and turning more colors. It didn’t look like a foot anymore. I had to take off the ace wrap I had on my foot. I could feel that my foot was swelling up more from that. I purposly put it on loose so I could tell if it was swelling. I had a sock on under the ace wrap so nobody was diguisted. In class, I asked to go to the bathroom cause something felt really wrong with my foot. I checked it and couldn't move my toes anymore and I could only see the top half of my toes. To me, it looked like a colorful elephants foot. I somehow managed to go through the rest of the school day. That day, we went to visit the gym because I visited it every Thursday to say hi. We went and I said hi to the team parents like I always did when I first came. They wanted to see my foot. I showed them and it looked even worse. I couldn’t see my toes anymore and my foot had black patches on it along with the other colors of the rainbow on it. They were really concerned and told me to go visit my teammates and coaches while they all talked (with my mom). The adults talked during that time (probably about my foot) while I visited. They wanted to see how my foot was and everyone was really grossed out. The coach who deals with medical issues also said that it looked really serious and I should probably get it checked out immediately. After visiting, we left and when we got in the car, my mom asked if I wanted to go the emergency room. I really didn’t want to go even though I knew I had to. We went home, took our time, got something to eat, and I emailed one of my teachers to let her know and I knew she kept in contact with two of my teachers. After that, we left. At the ER, we waited about an hour then got in. They took my blood pressure and pulse. They were really high. My resting pulse rate was in the 100's and my blood pressure was high enough to where I would probably need to be on a medication for it. They said it was probably anxiety. We were put into a room and an hour or so later, we finally saw a doctor. He was very nice. He said it might be an infection and he went to take x-rays to make sure that my bones weren’t infected. The x-rays were normal. He said it looked like I had dermatitis and cellulites. He put me on prednisone and Keflex. He gave me some pain medicine to help me sleep. Then they said if it gets worse, come back. They didn’t want me going to school the next day (Friday).

We got home at 3 in the morning. The next day, I took all of my medicines I needed to and called my teachers to fill them in on what was going on. I ended up not eating the whole day also because of the prednisone. Then Saturday, I noticed I was starting to get a rash on my other foot and up to my thigh. It started to hurt once again. The RSD was coming back and it was worse than ever in not only my foot, but my shin too right below the knee. My right shin looked like I was wearing a sock because it was dark purple and it ended an inch below my knee like a sock and it hurt like RSD also right below the knee and down. I was suprised that the RSD could spread so quick. I also discovered an "interesting" talent. If I beared any weight on both of my feet, they turned all purple and black and hurt more. Okay...not the best trick cause kinda contributed to me going back to the er along with it going back into the left foot. My mom once again took me to the ER that night. They got us in and we waited in the room for another hour or two. By midnight, we saw the doctor and he wanted me to have a blood test to make sure it wasn’t an infection and he also scheduled me for an alter sound the next day around noon to make sure there were no blood clots. I had blood drawn and they read normal with the exceptions that RSD causes and the increase in sugar from me drinking a huge sugary drink They then said I didn’t have cellulites or dermatitis. They had me stop the medications.

Sunday afternoon, I went back to the hospital for an alter sound and they said it looked normal and there were no blood clots. The rash had spread up to my arms and they said it was an allergic reaction but they didn’t know what it was from. They scheduled me an appointment with an orthopedic doctor the next day. They didn’t want me going to school until they knew what was wrong just incase. My orthopedic doctor was out of town again so I saw another doctor. He said that my right foot looked like nothing he had ever seen and he didn’t know what to do for it. I started crying and I was so frustrated that he didn't even try to help. He said that he could try and schedule me for an appointment with his wife, a dermatologist, to see if she could help determine what the allergic reaction was from. We agreed and we saw her the next day. She was very nice and did the biopsy on my left leg to see what the less severe reaction was which hurt like.... yeah. Anyways, afterwards I got two stitches which I am terrified of for some reason. She said she would call with the results, but by the way it looked, it was either an allergic reaction or RSD. She called and said that it the minor rash and the purple shin that looked like a blood clot was really an allergic reaction to a drug, which she determined was the Keflex. She gave us more prednisone and told me to take it for 30 days and slowly wean off of it. We also scheduled another doctor appointment as soon as my doctor came back and he said that what had happened to my right foot was Steven-Johnson’s-Syndrome. It is a syndrome that leads to having bad allergic reactions that can be fatal. Thankfully, since the allergic reaction was to a cream, it wasn’t my whole body. If it were taken as a pill, I would have either died off suffication from the full body swelling or have severe permanent damage because my whole body would have looked like my foot. He also scheduled me in April to have a series of nerve blocks done 3 days in a row (leaving the catheter in and being hospitalized) and after each injection, go to intense therapy each day.

I went to therapy and back to school that Thursday in the wheelchair again. The therapy was very intense for me. On Friday, I ended up leaving school early because I felt sooo much worse, probably from the therapy. I got picked up and went home. My mom called the doctor again and talked to him on the phone. He scheduled the series of blocks originally for April, but he said it couldn’t wait that long and said for us to call him the next day because by then, he should know when the doctor could do it. He wanted it done very soon. I panicked. That Friday, my mom called the doctor when I was at school and I was very nervous the whole day. I quickly rolled into my science teacher’s room at the end of the day and tried calling my mom, but she wasn’t in her office at the time so I waited until I got home before calling her. She then told me that they were canceling the appointment because the doctor that was going to do it was out of the country. Instead, my doctor had another idea. He had a former patient that went through an intense therapy program locally and was nearly cured of her RSD. He said it was a less severe case because it never spread from her right foot, but the fact that she was nearly cured of it was wonderful. She is now able to walk again and run and do everything again. She has some difficulties here and there, but for the most part she is cured. He wanted me to go through it also. I would have to become homebound. Hearing that made me cry

That Saturday, the RSD returned back into both arms all of a sudden and it was hard for me to do anything. They couldn't do anything for the few days because they aren't open on weekends and I was going to start therapy that Wednesday, but my doctor said, after my mom called him about it going into my arms, to not go to school. The therapy was going good and after I learned to walk, I stopped crawling on my knees (as I had been doing since I broke my foot in June). A week later, if that, it spread into my right knee. It's doing better now there. Still a little slow at bending it, but its better. Then yeah. The end. I'm so good at ending stories, I know

I'm new here, but I've been living with RSD since '93 from a work injury. I've done the fighting insurance companies (boy they can be a pain in the behind!), workers comp and SSA.
Seen many doctors (and many that were not very good or on the ball), many meds, blocks, and PT (which made mine worse.)
I live in WA but used to live in OR.
I've no human kids (yet) but do have parrots and outdoor cats and the ol' man.
The critters are sometimes all that keep me getting out of bed some days as they need me. Been great therapy
My RSD started in my left foot but has moved up the leg and hip and is doing it's damndest to move into the other leg.

Hello, I'm a Dental Assistant, who ended up with Carpal Tunnel Syndrome in both hands (mild CTS in the Lt. hand and severe CTS plus trigger finger in my Rt. hand which was unfortunely also my dominant hand) I had carpal tunnel and trigger finger release surgery on my Rt. hand in 3/06 and things went down hill after that! A few months after the surgery I started having severe burning pain and my hand was swollen twice it's normal size and turned bright red in color. In 10/06 I was diagnosed with R.S.D. and have been fighting Work Comp ever since (I.M.E. says it's recurrent CTS). My 3 doctors say R.S.D.

hi all. i'm angie... i just turned 33 - wife of josh and mom of 3: talley (girl, 7), london (boy, 5) and scout (girl, 3).i was diagnosed with RSD about 3 days ago. i had shoulder surgery in march and had constant pain afterwards. the pain meds wouldn't work and i finally had a face-to-face with my doc about the pain that was burning a hole thru me! i had an x-ray and an MRI that showed the surgery was a success, but the pain said something different. i also had a purple hand and cold and numb fingers.

she told me i had RSD and sent me up to the pain clinic. the doc there said he didn't know... said 50/50 chance, but that he wanted to do blood work, a bone density scan and a shot in the neck. he said if the shot worked then he knew what it was.

well, i had the shot and it worked. i left the office without any mention of doing any other tests.

i'm really scared. i have a loving husband, but he doesn't understand how much pain i am in and thinks i just want attention. i am a very, very active person. i love any kind of sport and just play till my body stops. i'm scared that this is going to take over my life! i have been forgetting things. i have been talking strangely - i will start a sentence and then start the sentence over after saying the first 3 words like... i have to i have to go to the store.

can you guys relate to this?

i'm glad i found this forum.

ang

http://neurotalk.psychcentral.com/sh...ad.php?t=18345

Hi,

My name is Sue. First let me say that I am so glad to have found this forum. I feel that I no longer will be alone.

I have had RSD Type ll for 8 yrs. All my life I have had a hip problem. After many docters and operations I heard the news I had been waiting for all these yrs. My Dr. agreeded that I needed a hip replacement. I was so happy. He told me my pain was going away. Boy was he wrong. A 4 hr. operation turned into 7 and when I woke up, my right foot would not move. They fitted me for a brace right away and said I should get better in time. 3 months later, the pain was getting worse. Burning like I was on fire. My foot would curl up with muscle spasms so bad that I would just scream while my husband tried to uncurl my foot. Well the years have gone by and I have just gotten worse. Its hard to walk, sleep, get out of bed, you all know what its like. The meds are so bad, but I need them to do "normal" things. I've tried to work, but had to stop 2yrs ago.

The worst thing for me is my family not understanding. My kids think I am a drug addict. Everyone says I need to just deal with it. Easy for them to say.
My hands are starting to go numb from typing. Have to stop.

Thanks for being here. God bless.

Sue

Hi, my name's Robin, I'm a middle-aged male, single, living alone in a rural area of central Scotland, UK.

A few days ago I told my physiotherapist that, having done some research, I thought I probably have CRPS type I, and he agreed that seems likely. I've yet to discuss it with an MD. I'm due to have acupunture at a pain clinic on Friday when I might be able to have a short chat with a doctor, otherwise I'm due an evaluation at the end of the course of acupuncture, in a couple of weeks, when I expect to be able to discuss the big picture with a pain specialist.

The problem is in my left knee. I first injured it many years ago, but about 2.5 yrs ago it got hurt on a hill walking expedition and it's been getting worse very gradually ever since. I used to do a lot of hill walking but haven't done any since that incident.

When I say it's been getting worse I don't mean steadily: there's a cycle in which I rest and it gets better, then I get more active and it gets worse again, but the general trend is for the lows to be lower and the highs to be less high each time around.

A bit over a year ago I had surgery on the knee: debridement and decompression of the patellar tendon. The operation seemed OK (as far as I know) and the wound healed very well but then it seemed I was back where I had been before the op, except maybe a bit worse.

I saw the surgeon occasionally, and a physiotherapist regularly for a while, with no improvement, then eventually the surgeon noticed that my left leg seemed cooler than my right, and there was some discolouration of the skin on my knee, and he decided to refer me to a pain clinic and a different physiotherapist. This was towards the end of 06.

Unfortunately, neither RSD nor CRPS nor chronic pain syndrome was actually mentioned until a few weeks ago, so I was skeptical and paid for a second opinion and MRI. The scan showed nothing significant and the second orthopedic specialist agreed with the first. (It was unfortunate in financial terms but maybe a good thing in that it convinced me that there's probably no major mechanical problem.)

The pain specialist decided to try acupunture first. I had three sessions, from which I noticed no benefit, then they switched to electro, and I thought my knee felt slightly better for an hour or two after. When I said that, they decided to increase the course from 6 to 8 or 9 (not sure) sessions in total, on a weekly basis, so I'm due 2 or 3 more.

I've gotten the most info from the physio, who when I first saw him mentioned "chronic pain syndrome" and took the time to explain how nerves can get "activated" so they keep reporting pain even when there's no good reason for it. It's only looking back that I can see that's what the specialists and my GP have had in mind.

My actual pain levels are not that bad. I'm not using any prescribed meds just now. Most days I take just one 400mg ibuprofen for comfort in the evening. But the activity level I have to keep to is very low. I stopped working towards the end of 06, I get food delivered, and, apart from medical appointments, get out just once most weeks, to see my elderly and frail parents on a Sunday afternoon. I spend almost all day, most days, sitting in my armchair with my legs raised, using my laptop, reading or watching tv. If it wasn't for the laptop I'd go crazy! I have a couple of websites of my own and run ones for other people. Also, as I was a self-employed computer technician and still have ads in some directories, I get regular calls from people with pc probs, and do what I can to help them over the phone.

My big problem right now is that, when I work on the laptop, my leg muscles tend to tense up, which sets off the knee pain. It feels very like a muscle or tendon strain, and if it wasn't for the temperature and colouration anomalies, and the clear MRI, and the time it's lasted, I'd be quite sure that's what it is. (It gets inflamed sometimes too, but that could happen in either case.) It seems like I only need to avoid putting any strain on it at all for maybe 3 or 4 days and it would get better -- it has done in the past, in the short term, before "going" again -- but it's very difficult to reach that level of inactivity, living alone, and it seems to take less and less to set it off.

That's probably enough for now. I'd be particularly interested in hearing from people with similar symptoms, and those who have strong views on whether I probably do or don't have RSD/CRPS, but any comments will be welcome. Thanks for reading this far.

Hi Robin I just saw this here, wanted to say that I responded to the same post in the new members forum, if you care to read it. I got all confused when I joined, lol... I have several posts that aren't quite where they ought to be, at least you are doing better that I did!