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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-21-2010, 11:25 AM   #1
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ctucker225 HB User
Possible RSD

Hi all. I went to the orthopedic doctor for torn ligaments in my ankle and basically anytime my foot hangs down it turns purple/red and it hurts all the time even when elevated. The OS looks at my foot and says I think you might have RSD. So here are my questions:

1. What prompted you to go to the doctor originally?
2. How did they diagnose you?

It just seemed really odd to me that it was my first visit to this doc (second opinion for surgery) and he hit me with RSD and then didn't even explain what it was and what would make him think that I have it.

So there you have it. Thanks in advance for any answers you may have for me.

 
Old 04-21-2010, 04:13 PM   #2
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Smile Re: Possible RSD

Hi and welcome. What was his reason for not answering you when you asked him why he thought you had RSD? That's weird that he wouldn't give you a reason.

I am SO not a good example of how I was diagnosed with RSD because I had it for over 3 years by the time I was diagnosed plus I got it over 24 years ago so times have changed. Others who post here will help you out with their stories. One of your symptoms that might have led the doc to think you could have RSD is the color changes that you describe. Did he have any suggestions about how you should proceed from here? I think if I were you, I'd see a pain management doc.

Good luck and I'm sure others will post here soon.

Sharon

 
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Old 04-24-2010, 06:12 PM   #3
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Re: Possible RSD

Hi, when I was diagnosed it was pretty much like yours, I had mortons neuroma surgery,wasnt healing right so i went to my primary care Dr. who sent me to a neurologist who thought I had peripheral neuropathy and drop foot, I cant bend or flex any of my toes. Had an NVC and EMG neuro thought damage was to my ligaments, So I went to an Ortho to see about getting it fixed. well like you when I was sitting there with my feet hanging down My foot did its thing and turned its purple blue color also it is much colder that my other foot, when the doc was touching my foot I literally thought he gave me a shot, he hadnt and he looked over all my test etc etc etc looked at me and said I am sorry you have RSD, he said from my surgery which involved removing a nerve in my foot, he sent me to physical therapy gave me three scripts, tegretol, vicodin and ultram, then set me up with a pain management Dr. who wnts to do a sympathetic nerve block (not to sure bout that) Did your doc set you up with physical therapy?

 
Old 04-26-2010, 04:25 PM   #4
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Re: Possible RSD

Well the kicker with all of this noone else seemed to notice anything strange about my foot. I had been going to PT for 6 weeks at the time for the initial problem and it was never even looked at or addressed as far as the wierd color. I am having ankle surgery at the end of May to repair some torn ligaments so I am hoping for the best as far as all of this is concerned. The only time I have any discoloration is when my foot dangles like when sitting on a couch or a chaiir.

 
Old 04-28-2010, 05:42 PM   #5
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Re: Possible RSD

For alot of people with RSD the color change comes and goes and it usually goes when your at the doctors office, I am surprised the doctor wants to do surgery suspecting possible RSD as surgery can worsen or cause RSD to spread do some checking look for a doctor familiar with RSD and good luck
Kelly

 
Old 04-29-2010, 12:34 PM   #6
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Re: Possible RSD

ctucker,

Welcome to the boards. You have come to a great place for advice and support. In some cases surgery can make the rsd worse but at the same time if something is wrong that needs fixed and doesn't get fixed it can make the rsd worse or even spread at a higher rate. I've had surgery and even surgeries after rsd set in. In my case it did make the rsd worse but also helped because I had to have knee surgery to reposition my knee. It did help but in a way it can some times be a catch 22. I would do research of docs in your area and see if there are docs that already take care of people with rsd.
The biggest thing I can tell you is to be your own advocate. Stand up for your self even if that means disagreeing with a doc or having to go some where else. This is your life and your health and you have to be in the drivers seat so to speak.
If you have any questions or just need some one to talk to please feel free to ask away or vent away. We've all been there and can relate to the frustration and emotions that come with being diagnosed with rsd. I truly hope that I've been of some help and I wish you the best of luck with what ever you decide for your well being.
Take care and stay warm,
Deanne

 
Old 06-30-2010, 09:57 AM   #7
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Re: Possible RSD

Hi, can the doctors and other health professions have it wrong for me. I have been diagnosed with Rsd (crps) as well as possible crisp padiah syndrome (due to a piece of bone growth in the ankle) and been on various medications to keep the pain under control. The reason they though I had Rsd was due to the fact my right foot/ankle was constantly swollen, changes in foot colour (blue/purple) and temperture. Plus the shooting pain on top of the dull achey sensation I have.
The other day I agrivated my condition by twisiting my foot (ankle appears weak/instable). The pain was unbearable. After resting my foot on Dr's orders the swelling went right down. I have been wearing an aircast boot to make sure it stays down, but still find by the end of the day I'm in a lot of pain. I am concerned the Pain Clinic Dr has got it wrong and if so how do I prove this. I have read other posts and noticed that people with Rsd tend to find it spreading to other limbs. I have never had this. Could the accidntal twist have moved something back in place? Any advice would be most helpful as I'm back at the hospital next week.

 
Old 06-30-2010, 08:38 PM   #8
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Re: Possible RSD

HI,
I was at Mayo clinic the first time someone mentioned RSD! They were sure I would have it, but they tested me by way of a body scan. They ended up doing a whole body scan which showed I didn't have it. 2 1/2 months later I went to a pain doctor at Rush in Chicago who knew by just talking and seeing my foot that I had it. He was very surprised that they didn't run a sweat test on me at Mayo. He said that's the test he would have done. I never have had one, but I know I have it.
Susan

 
Old 07-11-2010, 12:57 AM   #9
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Re: Possible RSD

Quote:
Originally Posted by ctucker225 View Post
Hi all. I went to the orthopedic doctor for torn ligaments in my ankle and basically anytime my foot hangs down it turns purple/red and it hurts all the time even when elevated. The OS looks at my foot and says I think you might have RSD. So here are my questions:

1. What prompted you to go to the doctor originally?
2. How did they diagnose you?

It just seemed really odd to me that it was my first visit to this doc (second opinion for surgery) and he hit me with RSD and then didn't even explain what it was and what would make him think that I have it.

So there you have it. Thanks in advance for any answers you may have for me.
My daughter was 8 when all the crazy RSD stuff started but was not diagnosed until 4yrs later. She is now 19 and the monster is still with her.
We had noticed when Ash would get hurt (she loved sports) it was like she broke a bone. We would have x-rays and nothing would show up. This went on for about 4 yrs with doctors tell us she was just dramatic or had a low pain tolerance. Then when she was about 12 she was in the hospital with her arm purple, and cold and so much pain. Our hearts hurt so badly for her. Her arm got so bad they wanted to amputate it. Then one Dr. walked in and said "wait, I think she has RSD".
There is no sure test for RSD. Some doctors think a bone scan will show RSD, some think nerve conduction test, (please don't ever have this done if you have RSD) and others think there is no such thing as RSD. What we where told by an amazing dr. is to drop rubbing alcohol on the effect area. A lot of the time with someone with RSD this will cause a lot of pain and discomfort but not always (you will find with RSD, it does not treat everyone the same) The coldness of the alcohol and the fast evaporation is what makes the RSD hurt. Cold is so bad on RSDrs, yet some doctors say put ice on it. UGgg
I would get a second opinion, usually if it's RSD you will know it. Pain leveles higher than what it should be, cold to the touch, or hot, shiny skin from swelling, twitching, and so on.
I hope I have been some help.
Peace,
Lorie
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