Friday, November 28, 2008


We continue today in our series of some of the top ten questions we get asked at American RSDHope regarding CRPS. Some of you are probably getting a little confused by the terminology, CRPS/RSDS.

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,



jeisea said...

Hi Keith
This is a very timely post. I recently saw an orthopedic surgeon who had no idea what crps was but had heard of RSD. By the next time I saw him, a few weeks ago, he'd obviously done some research. AS I need surgery of a new injury he cautioned me to take vitamin c as part of preventative protocols for preventing crps complications post orthopedic surgery.

With so much research and understanding of brain plasticity and implications for pain, it's hoped the new drug free treatments become widely known and used. Guided imagery, self hypnosis, Mirror therapy, tactile discrimination (as per new Moseley and others UK research), Yamamoto New Scalp Acupuncture (using micro systems, cortical representations of the body in the brain, head, face)all have a part to play. The US military's published studies using mirror therapy to treat soldiers offers compelling evidence of it's effectiveness alone.

The future for us looks very hopeful. I hope your newly diagnosed members are able to access this kind of treatment.


Keith said...

I am glad he caught up! Although using vitamin C for preventing complications due to CRPS, hmm, that is something different. Not sure what the reasoning is there.

Did he give you blocks before, during, and after the surgery? That is the best prevention for CRPS complications regarding surgery.

As to mirror therapy, I really am not sure why this is getting so much play lately. I have read the studies and articles but haven't been impressed by them.

You are right that there is a lot more research happening and the military is the place right now. More soldiers are returning from the wars in Iraq and Afghanastan with nerve injuries and many of them are resulting in CRPS, especially due the severe nature of the trauma.

One of the most exciting areas to watch for will be in the area of ketamine therapy. It still seems to hold the most promise and once they start treating patients in groups of fifteen and twenty at a time, they will truly start seeing results. (that is the 5 day in-hospital version not the out-patient or the coma version)

Thanks for your input!


jeisea said...

Hi Keith

I just found your response to my comment. Ther has been a lot of research about vitamin c for the prevention of CRPS. It is thought that inflammation plas a part in the development of CRPS. Vitamin C is a strong anti-oxidant that deolishes the fre radicles that cause inflammation. This appears to be the reason behind its use. Professor Paul Zollinger in the Netherlands did the origional study and follow up published research supports the finding. The origional study was on the use of 500mg of vitamin C given to people with 'Colles wrist fracture". People with colles fractures are at high risk for developing CRPS. THis is what happened to me so you see my personal interest.

It was shown that giving vitamin C from the time of accident to 500days of until pain goes, can prevent the development of CRPS.

Subsequent studies have increased the amount from the origional 500mg to 1000mg.

In my last comment I mentioned I was having arthroscopy surgery. I took 1000mg of vitamin C am continue to do so. MY anaethetist read and was guided by Professor Scott Reubin's protocols for preventing CRPS post orthopedic surgery. I have no sign of CRPS in that area so it was successful and a very good result for me.

I hope you don't mind but I'm giving you links to research and to Dr Reubin's protocols.

Keith there are some amazing things happening with pain management because of the new understanding of the brain and its plasticity. The new treatments involve brain retraining, creating neural pathways. These treatments are drug free and low cost. There is great hope for us now.