I was excited by something I heard the other day at our local CRPS Support group meeting (besides being one of the directors of American RSDHope I am also a member of a local support group down here in Florida). What did I hear? No, not "Keith, you won the lottery, here is your check for $35 Million!". (that was a couple of weeks ago). No, the good news was that of the four new members we had come last week, two were newly diagnosed (within the last year) and they were given a diagnosis of CRPS and the Dr knew right away what they had!
They actually were a little confused when they went on-line to look up information and saw some of the old terminology "RSD". This was good to hear because;
1) It means they are finally starting to use the correct terminology.
2) They were diagnosed quickly and the Dr knew exactly what they had based on the symptoms they presented (discoloration, allodynia (extreme sensitivity to touch), extreme pain, temperature differences in the affected limb, etc.
It is something that is reflected in the emails we have been getting and the discussions taking place on-line lately as well. More and more patients are getting diagnosed more quickly and correctly! And they are being given the new diagnostic term CRPS rather than the old diagnostic term RSDS, which is also good.
This shows that we have been making headway in the national RSD awareness campaign efforts and the educational efforts being undertaken at the medical schools and clinics around the country. It has taken a while I realize to start to notice the change, but at least it is happening.
For those of you who need to be reminded of the DIFFERENCE BETWEEN CRPS AND RSD, check it out :)
Ten years ago it took the average CRPS patient seeing 8 to 10 Doctors before they got a correct diagnosis. I think we need to do a new survey, and I believe we will find out that nowadays that number has been cut in half.
More patients are being treated correctly as well. Many years ago it was common practice to apply ice packs to CRPS patients from the day they walked into a PT center. They were told when they got home to alternate ice and heat all day long for weeks at a time. When they were at physical therapy they were immediately put into ice baths and told this was the way the disease was treated.
After a few months the patient was so advance in their disease the blocks had no chance of working.
For a long time, decades upon decades, Drs treated CRPS patients with sympathectomies in an effort to "cure" the disease. They froze, cut, burned, etc. nerves in an effort to make the pain go away and it wasn't until only a few years ago that the top Drs and researchers in the country came together and realized that in most cases, sympathectomies were actually making the disease spread and/or worsen rather than curing it! Nearly all Drs have since stopped performing these types of treatments.
As the years have gone on more and more Drs have come to see that the non-invasive treatments are the way to treat this disease. That when you cut or puncture the skin of a CRPS patient you actually run the risk and likelihood of the disease exacerbating.
Some of the exciting treatments today, like the 5-day low-dose ketamine treatment for example, are the new face of the disease and hold great promise for the future. One day they may very well find a cure for us. In the meantime, we would settle for some understanding, and ome pain relief without any treatment that makes it worse :)
Have a great week-end,
Keith
