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,


Wednesday, November 26, 2008


Here is another in our series of TOP QUESTIONS that we get asked here at American RSDHope. Todays question relates to, "What is the difference between Addiction and Tolerance as it relates to taking Opiods for Chronic Pain?

On the website we address this question directly, the article is called, appropriately enough, "WHAT IS THE DIFFERENCE BETWEEN ADDICTION, DEPENDENCE, AND TOLERANCE?" 

It is a two-part article compiled by Keith Orsini, one of the Directors of American RSDHope.

The opening of the article states,

"Some medications used to treat pain can be addictive. Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together."

People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision."

The article goes on to say,

"Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time.""

the article continues ...

"In certain parts of the country, the crackdown on illegal use of OxyContin has made it hard for pain patients to get legitimate prescriptions.

"OxyContin was the first prescription medication listed as a drug of concern by the federal Drug Enforcement Agency, which made it a target," says Ronald T. Libby, PhD.

The drug, Libby says, is "monitored by pharmacies and [Perdue] Pharma, the maker of OxyContin. Some physicians, knowing the DEA or sheriff is looking at these scripts, refuse to write prescriptions for fear of prosecution. Doctors can be scammed, and if a patient takes some pills and sells some, the doctor can be guilty of diversion." Libby is the author of a Cato Institute policy report titled "Treating Doctors As Drug Dealers: The DEA's War on Prescription Painkillers" andprofessor of political science and public administration at the University of North Florida in Jacksonville.

"The war on drugs has become a war on legal drugs, on patients who take them, and on doctors who prescribe them," Serkes tells WebMD.

Later, the article discusses everything from the backlash of oxycontin abuse to truths and myths about Oxycontin.  Information for the article was pulled from a wide variety of articles and sources and it can be used to help inform and educate your medical professionals about the differences regarding Opiods uses and abuses. Far too often all we hear about are the horror stories and Drs, and the medical boards that govern them, are too quick to lump everyone in the same category, abusers. Leaving those of us in chronic pain to suffer needlessly.

There are excellent pain medications available that when used correctly can be of great use in controlling chronic pain and the majority of chronic pain patients do use them correctly. It is time that the medical community understood that and acted, not re-acted, accordingly.

peace, Keith 

PS - You can find more articles regarding Oxycontin, opiods, use, abuse, and other medication in the MEDICATION/MEDICAL ARTICLES SECTION of the AMERICAN RSDHOPE WEBSITE


If anyone needs a copy of the NATIONAL RSD/CRPS AWARENESS RIBBON, for their website or blog, or myspace page, or facebook page, etc. send an email to and let Keith know that you want to help spread awareness of RSD?CRPS. 

Help get the word out everyone!!!

Peace, keith orsini, Director, American RSDHope