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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I obviously can't offer anything but my opinion based on having this disease myself, and years of research related to that fact, so take everything I say with that in mind! Also, everyone is different, and the only absolute with RSD is that there are no absolutes.

The first thing that leads me to believe that you don't have RSD is that what you are describing is not a whole-foot issue. In most cases, RSD involves the most distal (farthest from the body) and entire part of a limb. That means, lower limb RSD will involve everything from the site of the injury to the end of the toes. If a person has RSD in a foot, it is generally the entire foot. I can't say that I've ever heard of a person having RSD in a small area like you describe...but I certainly haven't heard everything there is to hear. It just makes it less likely.

With no hypersensitivity or burning pain, and with no real vasomotor (blood vessel) and sudomotor (sweating, skin/hair/nail) changes, I think it's really unlikely that you have RSD. Like the poster above said, in some people it starts out mildly (I was one of those people), but usually there's some degree of those symptoms at the beginning. As I'm always careful to say, though, RSD can present in different ways. There are even reports of people who have RSD with no pain (it's REALLY unusual, and they generally have the other symptoms really severely).

Also, if the swelling you described is bilateral (I think I inferred that it is, but I'm not sure if that's what you meant) but the other symptoms are unilateral, it's probably not significant in determining whether you have RSD. That's not to say that it may not be significant in some other way.

The way you describe your pain, it sounds mostly mechanical and musculoskeletal in nature. If you also have nerve pain, it could be related. Have you had an NCV/EMG? That test can tell you if you have any damage to a major nerve, although it doesn't pick up well on minor nerves. Also, I can tell you that I've met several people who were misdiagnosed or nearly misdiagnosed with RSD when they really had nerve and blood vessel entrapments or impingements. An EMG can often pick up on that, and those should be ruled out because they're generally easier to treat than RSD!

I can try to answer your question about atrophy versus dystrophy. Atrophy refers to tissue wasting of any kind, I believe. Dystrophy refers to abnormal nutrition of tissues. In RSD, it refers to the vasomotor changes (instability of circulation) that results in abnormal amounts of blood flow reaching tissue.

For me, using capsaicin cream was incredibly painful. I tried it several times many years ago, and I'll never touch it again. It irritated my sensitive (and atrophied) skin, and I could hardly bear the touching necessary to apply it in the first place. Then it burned, which isn't a good feeling on top of the other burning pain! I've heard similar reactions from other people with RSD, but I'm sure that there are people with RSD who have reacted to it well. Everyone's different. I'm certainly glad that it helps you!

I don't know what type of doctor is best to rule RSD in or out for you. Some people prefer pain management docs, some neurologists...I think we all tend to see whoever we've found who actually knows enough about this disease! I hope that somebody else will have better advice than I have in that area.

Good luck, and I hope you get some answers soon!

-Betsy
Hi,
RSD is really confusing and affects people differently. Mine started in my thumb which did atropy rapidly. It looked like a little twig. I wasn't able to move it for months. The rest of my hand swelled. I also heard that RSD was distal but that is not so with me. It moved to my knees which have the same colorings in the shower that you describe. But sometimes I get the pinks and purples at other times also. My legs are also almost always mottled. I've seen neurologists, orthopedics and pain management docs. They all agree that I have RSD. Hopefully you don't. Just wanted to let you know that I have some of the same symptoms.
Good luck,
Linmarie
Hi Michelle, I've also looked at some of the RSD pics online, but the pics seemed to be of severe cases. I'm truly sorry that PT didn't stop the spread of your RSD. I've also taken photos of my bad and good foot soon after my injury. Only one doc looked at the photos...the other specialists didn't want to see my photos. Unbelieveable! One doc asked why I took photos, was I going to sue someone? Gosh, it's good to document the progression of symptoms via photos. I don't get any electrical shocks or involuntary movement. After over 3 years of chronic pain, I still have not found a doc to help me. I'm still trying to find help.

Hi Cattys, Thank you for the good wishes. Are you in physical therapy to try to strengthen your hand? I totally understand that when you are in awful pain, it's hard to use that part of your body as much because of the pain or swelling.

Hi Linmarie, Thanks for sharing with me about your symptoms. Do you know what caused RSD to start in your thumb? It's terrible how quickly RSD can cause atrophy and other problems. Yes, it's so confusing and there's so much to learn about RSD.





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