Well this year is 13 years for me, and I found that one of the most important things is....use it, or lose it. If you baby it too much you lose the ability to use the area affected. It is painful to use it, but it is always gonna hurt.

It took them 3 and a half years to diagnose me with RSD, and the doctors all didnt agree, and some still dont. But finding a caring doctor will help tremendously! Getting the the right meds that work for you is another thing to be working at.

Life will probably never be the same, but it isnt the end. For me it was the beginning of really getting to know my wife and children, and now grand children LOL!! Before RSD I was a type A driven person with a job that took up most of my time. I only thought I knew my family....well now I can say for sure I do LOL!

You are sooo lucky to have been diagnosed so soon! Seems like your doing the right things. So keep up the good work, and hopefully you will find that right doctor

Hi Liz,

Welcome and I'm sorry you have rsd. I have had it for over 2 years and it also started in my wrist after a closed reduction in the ER for a broken wrist. It has traveled up my arm and shoulder and spread to left side and right leg and foot. I don't know about workers comp, because I slipped on ice in my own driveway.
I do know that I needed to see a pm dr, neurologist and have pt for 6 months until it stopped helping. My orthopedic dr found out I had rsd about 4 months after my break.
My pm dr said that they don't know who goes into remission and who doesn't. I did have presdnisone which helped a little with swelling and movement. the 8 nerveblocks helped a little with the apprearance, and the pt was helpful with my movement too. My pm dr suggested a putty ball to use in my hand to get movement and strenght back in my hand and pt exercises like pushing my hand against a wall and gently trying to get wrist to bend while doing this helped a little. I still have home exercise program from pt for this and and was told to keep exercising and take meds. I try to take as little meds as I can. I also try not to fall when I walk. They say to try not to break any more bones for fear of spread. On how I dealt with it the constant pain I was first going to a psychologiest to vent. He helped me deal with it better, but it took a while for the shock to wear off and accept what I have.I then wentr to a psychiatrist for anxitety and depresiion meds to help too. I had an ovarian cancer scare in the midst of all this and needed more help. Luckily, I did not have cancer, but I sitll have rsd. They say its incurable but can go into remission. Don't give up hope. And though the unknown is scary, I find that with the help of drs and friends like people on this website and by taking it one day at a time, I can deal with it in a more positive way.I hope the best for you and am here if you need to talk. Please know that you are not alone. The people on this website are wonderful caring friends.

Hi there,

I'm so glad I found this site and all the great people and info. So I'm in need of doing a little venting because I'm beside myself. On July 13th I hald a fractured talus and a trimalleolar (7 breaks all around the ankle joint). Two days later they tried to cast me but the burning pain on the bottom of my feet was brutal. So I left in a walking boot as my cast. Certain parts of my feet were burning so bad. The baby toe down the side of my foot, my big toe and the are below it on the ball. All of the areas were extremely swollen and red where I got the burning pain. Around 4 weeks the pain started to lessen and by week 6 I had no pain. Prior I did experience the needle like pins and sharp pains.

All along when my foot goes down it would turn purple, elevate it and it goes back to normal color. When I put it down it swells up and turns purple and on the top right around the pinky toe right below it, it starts to pool or sell and then I get the shooting stabbing pains with burning sensation.

I asked my orthopedic about this and he said sounds like rsd/cprs. I went to a neurologist and at the five week mark I had too much swelling, so I went back to her yesterday (almost 11 week) she scheduled me for meg tests for this coming Monday.

I also have an appointment with a pain mgmt clinic on Wednesday. I'm freaking out right now because I appear to have a lot of the symptoms. I will mention that at 8 weeks only one of my 7 bones were starting to heal. The ct scan said diffusers osteopenic probably due to disuse.

So I still have swelling because instill have broken bones. Also when indomthe tinel test I get the positive meaning I van immediately feel the electric shock so I thought maybe could have tarsal tunnel. I can't walk yet and when I try to weight bare the biotin of my foot isnunbearablenwith a sharp pain that alsomfeelsvery fat and pressurized almost like its compressing a nerve.

I apolplogize for the long winded response but I'm really stressed out as I can't seem to get straight answers and Ifimdomhabe it I want to treat it immediately as a week from Saturday is three weeks. My main problems are purple leg when not elevated along with swelling and too painful to pit weight on. Also the underside of the foot in certain places feels extra soft and hyper sensitive. I also have a shiny smooth looking patch of skin where my largest swelling occurred on the inside of the ankle and its still very swollen so I'm not sure if its shiny skin like cprs or just stretched out and smooth.

I sincerely appreciate any and all advice, opinions etc. I am an extremely active healthy or was 37 year old male who needs to be on is feet for work . I'm wondering if its possible I have nerve damage that is causing this or if its cprs. If it is what should my next steps be? Many thanks.

I have included a few pic at different stages. The two red ones of my feet are very recent and that's what happens when they go down.

Attached Thumbnails

 

Hi Jason,

Wow, I hope some of your symptoms have started to calm a bit, or you at least get some answers soon. I know how frustrating and frightening it is when you know something is very wrong but you don't know what, and it takes so LONG to get any answers... All those tests and appointments take forever when you're in pain

Firstly, I would advise you to post your initial message in a new thread rather than within another, as you'll get more of a response and hopefully reach some folk who can specifically relate to your injuries.

Regarding whether you have CRPS or not....that's a biggie. I don't think any of us here would say that yes you do, because there are still so many things it could be. As you say, some of the symptoms sound very CRPS-like, but others don't. They could be due to something very different. It's important to try to get the right diagnosis. In the meantime, make sure that your docs address any pain you have, because if it does turn out to be CRPS it's important to get on top of that. You could also ask them to consider prescribing a nerve med like amitriptyline, Gabapentin or Lyrica to see if it helps things - it's a useful diagnostic for them.

Take care of yourself, and I hope you get some answers soon!

Bram.

I'm so sorry I didn't realize I posted this here please ignore. Again my sincere apologies

Hey, don't worry about it! It's easily done - just go back to the main forum page, and click on 'new thread' on the top left hand side. Then you can name your thread and just repost exactly the same info as you did here (you can copy and paste it).

Keep posting Jason - we all want to help, and just because you don't yet know for definite if you have CRPS doesn't mean you don't need the same support as the rest of us.

Let us know how you get on.

Bram.

Hi Jason,
I'm sorry you are hurting.
I'm not a dr but got rsd a few years ago in my right wrist and it spread to my hand and shoulder within about 4 months of being diagnosed. My skin was shiny, I had excessive hair and nail growth on tht backof my hand and wrist and upmy arm which stopped just below my elbow. I had extreme swelling and it went from dark purple to red and then also more normal looking when elevated. My otherpedic dr suspected it frist and sent me to a pm dr who confirmed it. I also went to a neurologiest who confirmed it as well.then to my gp juss so he was aware of waht was going on. I would check with all these drs and more if they don't know, but a neurologist and pm dr are probably your best first steps. Then they can advise you on what to do next. Like I said , I'm no dr, but your pic looks similar to my handa a few years ago. I also had dry scaly skin and no range of motion in the begiinning and it hurt to touch. I had a deep aching pain. the burning and spread started a year later. Well good luck with drs and though I know its hard, try to stay as calm as you can. My thoughts are with you.