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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


1). In what part of the body is your rsd located?
It started in my right foot and ankle in April 2005. It has recently spread to my right calf and knee.

2). What "cocktail" of medications are you on (mgs/# x's day/etc)
[list]
[*]Avinza (24-hr extended release morphine) 30 mgs once daily
[*]Flexaril 10 mgs twice daily (I have muscle spasms in my foot and leg)
[*]Norco 7.5mg six times daily (this is too much and will change to something else at next appt)
[*]Cymbalta 120 mgs once daily (for pain and depression
[/list]
There are also meds like Lyrica, Neurontin, Elavil, and other non-narcotics that help with nerve pain/RSD. I can't tolerate them because they make my depression significantly worse without a great benefit to my pain.

3). Have you been in physical therapy? Occupational therapy? Did it help?
Both -->PT helped ALOT. It helped me start up a lifelong treatment program and also helped me recognize my limitations (ie not running anymore) without giving up on exercise completely.

4). What tests have you had, and did any show anything?
The biggest thing is that my right leg is 2 degrees cooler than my left leg. I also have swelling and color changes.

5). Is your rsd as a result of anything you can pinpoint? (Car accident, surgery, etc).
I took a chunk of bone and cartilage out of my talar dome (a bone in the middle of your ankle/top of your foot) in August 2004 while wakeboarding. The binding did not release, causing my tibia to come down on the talus, causing this fracture. This type of fracture can usually only be seen on MRI, so it took 8 weeks for me to find an ortho to know what to look for. I had arthroscopic surgery in October of 2004 to clean out my ankle joint and drill into the talar dome to try to stimulate growth of bone and cartilage. This did not work, so I had a knee to ankle cartilage transfer in February 2005. During this entire period, I was in a 3-D walking boot from August 2004-May 2005. I spent over 2/3 of this time on crutches. So, I think that the combination of the injury and the length of time the treatment took (only 2% of people need the 2nd sugery) caused my RSD. There was nothing that my doctor or I could have done differently.

6). Have you had any "blocks" and did any of those help?
I had a set of 6 lumbar sympathetic blocks (each 1-3weeks apart) ending 6 mths ago and 1 last week. They help for a couple of days, but not much more than that. I know that they can put RSD into remission, decrease pain, or stop the spread....mine just doesn't seem to want to go away.

7). Have any other therapies helped? (i.e., massage, tp therapy, etc).
My PM doctor believes in a muti-disciplinary approach. He has a bio-feedback counselor that has done wonders for me. She does both bio-feedback and also talks with me when I need to. I also did a 4 week program involving bio-feedback, PT, and education at my PM doc's office. Right now, I am using a machine called RespeRate. It helps you relax and focus so you can do bio-feedback at home. It helps release endorphins and it doing wonders for me.

8). What does your pain feel like? (i.e., burning, throbbing, aching, etc).
It is constant pain than runs from a 3 to 7 on the pain scale. It usually is burning and stabbing/sharp.

9). What symptoms do you have?
Pain, sensitivity, swelling, discoloration, fatigue (from the pain and the meds)

10). Does anything irritate your rsd? (light, noise, breezes, etc)
Breezes, anything touching my foot/leg. I can't wear any shoes except flip-flops and slides and they can have NO heel. I also can't wear socks. If I spend too much time inactive or active, it gets worse. Also, I have a daily routine including relaxation and exercise that is essential that I stick to.

11). Has your rsd spread? If so, was it originally in one hand or foot, and spread to the other...or did it spread to other LIMBS? How long do you think it took to spread?
Mine spread 11 months after diagnosis. So far, it has stay confined to the same leg, it is just moving up.

Hope this helps!
txmomof3





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