Finally pain recognized as a disease in and of itself.
 

On the Front Lines, Nuerolgy Now
Neurology Now:Volume 4(2)March/April 2008p 33-34


Some of you are familiar with the treatment I had in Germany last year following a surgery to my RSD limb. I have always called it a continuous peridural nerve block and realize after reading this article that the term "peridural" means the same as peripheral block as described here in this article. I realize now that my terminology was simply a matter of a translation issue. What I had in Germany is the same as described in this article, see the excerpt below.

The fact that these doctors are recognizing pain as a disease in and of itself is a huge step forward for all of us, newly diagnosed or not. I benefited from this procedure in Germany despite all odds being against me for having had RSD for 6 odd years. I think this is very important information for any of us here who have to face surgery.

http://www.neurologynow.com/pt/re/ne...!1243308592244

MsL

Great Help!
 

This is wonderful information! Thanks so very much for sharing it. I did not realize that you had surgery on an RSD limb. The possibility of that necessity is frightening for those with RSD, but this information is great advice on how one might proceed. Given that we are faced with such a decision with our daughter, I can't thank you enough for this post!!
Blessing,
Jeanne

Ok, but...

RSD does not *only* equal pain. Yes, pain has the most impact on our lives and it is a major issue, but the rest of the condition has some serious impact too. RSD has a *multitude* of symptoms. There's tissue decay and function loss going along with the disease process. One study (Dr. Goris - The Netherlands, autopsy of an RSD limb in the nineties) found the same nerve damage in RSD patients as in diabetics. There is evidence of tissue decay. There is wasting of muscle, of bone; nerves and tissues are affected, ...

I'd much rather compare RSD to MS and not call it "just" a pain condition. It isn't just a pain condition. That is reducing RSD to something simple while it is something extremely complicated. Treating only the pain won't treat the RSD.

Hence the name, Complex Regional Pain Syndrome.

CRPSbe
I am with you on this one - there are reportedly people who have CRPS and experience no pain. It is formally classified in the more forward thinking countries as a neurological condition and not "just" a pain condition. Pain is only one of the myriad of signs/symptoms that can be found with this condition. I am sick to death of doctors repeatedly telling me that motor disorder is not a feature of CRPS - how many published articles do I have to point them to before they realise that they are fundamentally plain wrong!

Jimking - I have to disagree with the point I think you were making - I don't agree that the use of "complex" in the name conveys the fact that this is a condition with a lot of non-pain serious signs and symptoms - it just suggests a "not simple" pain condition.

I think the quoted text taken from the article that Mlsday's posted (that started this thread) is a bit jumbled and is not especially new or persuasive. Call me cynical but I am seeing very little genuinely new stuff coming out on CRPS and I am not convinced that anything is actually changing in terms of any of these recent articles "proving" that it is a real condition (there has been a bit of quite excited discussion in other threads here about that recently). I think a great deal of evidence based medicine exists already but we are simply up against basic human prejudice, apathy and abject ignorance (in both the medical profession and the general population). The de-nervation evidence that was recently reported isn't really new either - that has been shown previously and published based on work done on examining tissue biopsies.

For me the non-pain problems are of more significance than the pain. I am significantly disabled, not from pain, but from the movement disorder problems that have come as part of my CRPS package. The UK seriously lags behind other countries, not in its recognition of CRPS as a genuine, incurable and potentially devastating condition (which it does), but in its approaches to treatment and its interest in performing any real research. The numbers of CRPS sufferers estimated to exist in the UK are very small - around 11 500 so it commands virtually no interest in the medical profession here. Its not something that people can understand or relate to, like cancer, and no drug company is going to get rich from developing CRPS treatments so it doesn't command the same sympathy or interest factor as other conditions where large numbers of people will pour money and donations into research and treatment.

I think referring to CRPS as a "pain" condition, however complicated, does nothing to help the cause of those of us who have problems with the non-pain related symptoms and over-simplifies a condition with much wider neurological effects.

To be fair,
MsL
Didn't really compare "Pain" to rsd, in general,
only to her own personal treatment.

I think she brought some good info to the table..
While we all know that rsd is more than "just pain"..

pete
asb

Dear Gymjunkie,

You sound angry. I live in the US and have had a terrible time getting treatment (even though it is available), I can't imagine living in a country where, even if you are willing to try, you can't get treatment because it's just NOT there. Mslday has posted in the past in detail of her experiences in Germany. She has also posted more recently (I think) about subcutaneous Lidocaine, and, I am fairly certain, was very generous about 6 months ago in providing me with its protocols, (with which I tried in vain to get a few U.S. doctors to provide me, without success).

Ali from the UK also seems to be limited in her treatment options. Can you get to another country for treatment? If you think that you could never afford it, consider this:

A co-worker of mine has a child that has been sick for 6 years with RSD, and has been to Germany for the ketamine coma. When they needed money for his treatments many fundraisers were held at local venues to help his family. It worked. He and his wife have been incredibly supportive of me, and even suggested that I do the same if I continue to have problems with WC, something I never would have considered.

Good luck and take care, Sandy

Perhaps I need to clarify my thoughts better on this.

I have not referred to RSD here as a "pain condition" nor did the article so I'm a bit perplexed at the misunderstanding and where that is coming from.

Here in Canada (we have universal medicine similar to the UK) our government recently recognized "Pain" as a disease, it is no longer just a symptom of another disease.

The concept itself really has nothing to do specifically with RSD and how it is designated but it does have a huge potential for improving the treatments that pain patients receive.

Now that "pain" has been designated as a disease rather than just a symptom of another disease, my doctor, his pain clinic and our hospitals can all get more funding for treating patients with chronic pain. They will be able to provide more treatments and services for those of us who happen to have RSD.

That being said the article specifically talked about periphrial nerve blocks which I know from personal experience do help patients with RSD. In my case when I returned from Germany and explained to my doctor that the Germans have used the continuous peripheral nerve blocks successfully to help newly diagnosed RSD patients my doctor complained that he only had 4 beds in the pain center to treat the entire population of the province of BC! Essentially I was told that there was no money in the budget to treat patients right in the first place.

When I was first diagnosed with RSD I had to fight tooth and nail to get bumped ahead of a 3 year wait-list to see that pain doctor. To learn that my efforts to be treated within that 6 month window were all in vain was rather disappointing to say the least. I don't want to see it happen to others.

I thank god the doctors on the front lines with the Iraq soldiers have a more complete understanding of how to treat pain to stop new injuries from developing into RSD.

If my posting was confusing I apologize for becoming overly enthusiastic that pain (what ever the cause) will now be treated as a complete and separate disease.

Perhaps I should have split my posting up into two threads;

1. about the recognition of pain as a disease and
   
2. about the peripheral nerve blocks

but since the article itself discussed a treatment I received for my RSD post surgery I didn't think to do so.

It was not my intention to start a discussion about whether the designation of RSD or CRPS is a condition or a syndrome.

MsL

Hi Msl, thank you for the information, both at the beginning of your post and end. I didn't have any confusion. That must of been scary having surgery after 6 years of RSD. I have had RSD for 13 years now and am fearful of a possible surgery for ruptured disc that happened after my beginning of RSD that was caused after surgery. I think the RSD may be in my neck disc causing terrible headaches.
Anyway, thank you again, loretta