artist

I urge everybody to download both PDFs from the http://pdver.atcomputing.nl/english.html site, listed again at the bottom of this post, and take them along to your doctor.

The Dutch are streets ahead when it comes to dedicated research into RSD/CRPS and associated neuropathies, they have just published "The Evidence Based Guidelines Development (EBGD) Guidelines on Complex Regional Pain Syndrome type I (CRPS-I) dealing with the diagnosis and treatment of CRPS-I" published in 2006, which I site below.

To read more about the developments in Holland, here's a good rundown provided by the Canadian PARC site. The research list starts with the oldest, and although you may be inclined to skip the older publications, reading it all from the top gives you a very good insight into how their thinking has emerged. Lots of cutting edge stuff on DMSO and oxygenation here.
http://www.rsdcanada.org/parc/englis...anderlaan.html
"A huge committee of doctors, researchers and experts in Holland worked tirelessly for 5 years to write the standard treatment protocols for treating CRPS in Holland. Now every Dutch patient can benefit from these very important guidelines."

Here is the Guidelines link:
http://pdver.atcomputing.nl/english.html
EBGD Guidelines CRPS type I 2006
The Evidence Based Guidelines Development (EBGD) Guidelines on Complex Regional Pain Syndrome type I (CRPS-I) dealing with the diagnosis and treatment of CRPS-I were published in 2006. These guidelines were drawn up by a large number of Dutch medical practitioners in association with the Netherlands Institute for Healthcare Improvement (CBO) and adopted by the relevant scientific professional associations. Our patients association was also involved in drafting the guidelines.

The EBGD Guidelines on CRPS-I have been written to give practitioners more clarity in dealing with this condition, help them coordinate treatments more smoothly, and give the same information to their patients. The guidelines contain recommendations for practitioners to back up everyday practice.

The guidelines are the outcome of scientific research and opinions of experts, drawing on evidence to reach conclusions and recommendations. The evidence consists principally of articles on scientific studies into CRPS-I, which were assessed for their quality on the basis of EBGD assessment forms. Articles of moderate or poor quality were excluded. If you would like to read about the EBDG guidelines development process in full, go to the CBO website and click on Guidelines Development.

The guidelines do not have the force of law, but contain sound scientific ideas and recommendations that have broad support and should be used by practitioners in order to provide good care.

A separate guideline text has been developed to educate patients about their disease, and to present a non-scientific insight into the practitioners version. We hope that this patient version will give all patients a good understanding of the treatment options available and will help you decide on the right treatment in consultation with your practitioner.

Netherlands Association of Posttraumatic Dystrophy Patients
I.L. Thomassen-Hilgersom, chairwoman

Read/download the EBDG Guidelines 2006 on CRPS type I, practitioners version (PDF file).

Read/download the EBDG Guidelines 2006 on CRPS type I, patient version (PDF file).

fmichael

Artist recently posted a couple of links to sites reflecting the exciting work of some young Dutch RSD researchers, prominently among them, Drs. van der Laan and Frank J. Huygen. (Readers with a moderate amount of grey hair will recall the enthusiasm Frans from Holland had for the overlap between Dr. Huygen's work and the Marshall Protocol.) The practitioners’ guide is very helpful, although I wish there had been a greater discussion of immunotherapies.

So as a compliment to Artist’s posting, I am putting on this page references to articles by the "Dutch group" on immunological issues that I’ve already posted in a couple of threads but neglected to put up here, where each article can be accessed online, free of charge:

**Scroll down for the updated links in bold**

1. "Increased endothelin-1 and diminished nitric oxide levels in blister fluids of patients with intermediate cold type complex regional pain syndrome type 1," J George Groeneweg, Frank JPM Huygen, Claudia Heijmans-Antonissen, Sjoerd Niehof and Freek J Zijlstra, BMC Musculoskelet Disord. 2006; 7: 91. (demonstrating a relationship in human CRPS patients between cytokine production and diminished NO levels leading to vasoconstriction: as close to the Holy Grail as anyone is likely to come in a while, for my money at least) http://www.pubmedcentral.nih.gov/art...medid=17137491,

2. "Evidence for local inflammation in complex regional pain syndrome type 1," Frank J P M Huygen, Anke G J De Bruijn, Martha T De Bruin, J George Groeneweg, Jan Klein, and Freek J Zijistra, Mediators Inflamm. 2002 February; 11(1): 47–51 at http://www.pubmedcentral.nih.gov/art...medid=11930962, and

3. "Intermediate Stage Complex Regional Pain Syndrome Type 1 Is Unrelated to Proinflammatory Cytokines," Renate J. M. Munnikes, Christel Muis, Martine Boersma, Claudia Heijmans-Antonissen, Freek J. Zijlstra, and Frank J. P. M. Huygen, Mediators Inflamm. 2005; 2005(6): 366–372 (as described in their most recent article, this study looked at "patients with an intermediate duration of CRPS (median 20 months) and . . . found a significant elevation of IL-6 and TNF-a in the involved extremity compared with the uninvolved extremity") at http://www.pubmedcentral.nih.gov/art...medid=16489257.

Enjoy.
************************************************** *********
LINKS UPDATED** 3/19/07
Since then, the URLs on the three articles I mentioned have expired.
The following URLs are newer.

Here they are:

1. Increased endothelin-1 and diminished nitric oxide levels etc. at http://www.biomedcentral.com/1471-2474/7/91

2. Evidence for local inflammation in complex regional pain syndrome type 1 at http://www.pubmedcentral.nih.gov/pic...3&blobtype=pdf and

3. http://www.pubmedcentral.nih.gov/pic...3&blobtype=pdf

Hopefully, these last longer than the last ones.
Mike

Please feel free to contact Mike if links are found to be expired.


p.s. Also of substantial note is the correspondence of Frank J.P.M. Huygen, MD, et al, "Successful Treatment of CRPS 1
with Anti-TNF", J Pain Symptom Manage. 2004 Feb;27(2):101-3, a .pdf copy of which is attached herewith.

Attached Files

Successful Treatment of CRPS 1with Anti-TNF.pdf (57.2 KB, 69 views)

Jo*mar

Pictures and Photos thread

http://neurotalk.psychcentral.com/sh...ad.php?t=16167

__________________

InHisHands

http://www2.rpa.net/~lrandall/painscale.html

http://www.herbalremedies.com/rsd.html

http://www.webmd.aol.com/pain-manage...s-chronic-pain

Bronco4586

This is a good link for those just now finding out that they have CRPS.

__________________
Dana

Jo*mar

These are links that members have posted in threads - so I have tried to archive the links here with a short description.

[these from fmichael]
Mindfulness Based Stress Reduction [http://www.umassmed.edu/cfm/srp/index.aspx] or my teacher, Shinzen Young and some of his materials on working with pain [http://shinzen.org/].

"Pharmacologic Therapies for Complex Regional Pain Syndrome," written by Sean Mackey, MD, PhD, and Steven Feinberg, MD, MPH, Current Pain and Headache Reports 2007, 11:38–43.
http://neurotalk.psychcentral.com/at...6&d=1177281805
"Successful Treatment of CRPS 1 with Anti-TNF." may retail at roughly $1,500.00/month and it's almost impossible to get insurance coverage for it.
http://neurotalk.psychcentral.com/at...7&d=1177281836

In addition to the therapies that are mentioned in the attached piece, there has also been some relatively decent developments with Prialt (Ziconotide). Usually, this is administered as an almost last resort implantable pump for people with intractable pain - it's one of the deadliest naturally occurring toxins on the planet - but one very exciting recent case note by Michael Stanton Hicks, MD, one of the leading RSD docs in the country, demonstrated that a teenage girl with horrible RSD was put into almost complete remission using an infusion dose that was roughly three times the highest recommended dosage. Once again the article appears on the RSDSA Medical Achieves page [http://www.rsds.org/2/library/articl...ve/index.html], almost at the bottom of the page, under the heading of "Treatments," listed alphabetically by author. Regretfully, the file is too large to attach here. I urge you to give it a look.

Mindfulness-Based Interventions in Context: Past, Present, and Future," Clin Psychol
Sci Prac 10: 144–156, 2003.
Attached Files
http://neurotalk.psychcentral.com/at...9&d=1177299495

Attached Files
File Type: pdf Evidence of focal small-fiber axonal degeneration in complex regional pain sybdrme-I.pdf (168.4 KB, 0 views)http://neurotalk.psychcentral.com/at...4&d=1177433611
File Type: pdf Tissue hypoxia in complex regional pain syndrome.pdf (205.1 KB, 0 views)http://neurotalk.psychcentral.com/at...5&d=1177434610
File Type: pdf Mast cells are involved in inflammatory reactions during CRPS-1.pdf (96.8 KB, 0 views)http://neurotalk.psychcentral.com/at...8&d=1177436289

I'll try to remember to add more into this post as I come across them or as they get posted.

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InHisHands

http://www.joeylee.com/rsdresources.html
http://www.stormpages.com/sbhagwat/
http://www.myida.org/websites.htm

theoneRogue420

...what I need in all these links.

I am having a VERY hard time finding articles/sites that talk more about cold crps type II. I know it's much rarer then crps I, the hot kind, but you'd think I could find something out there! I'd especially like to see any pics, to see what (if any) differences there are. The only difference I am sure of is that I do not have the same skin issues as most of you... which I am mighty grateful for.

Do any of you suffer from this type of rsd? I'd really appreciate any info you might have. I may have had rsd for 14 years, but for many of those years I was offline (internet connections are almost impossible to find in Mexico, and we traveled in an r.v., had no permanent address), plus there is sooo much more known about rsd than there was when I was first hurt and seeing specialists. After those first two years, I went w/o treatment of ANY kind for 9 years. Until 3 years ago, all I could do was self-medicate with marijuana, which helped tremendously, but that was all I had access to. Other than that, I used a more holistic approach... mainly because it was cheap and didn't need an rx, lol.

Any help would be greatly appreciated, thanks in advance

__________________

There are only two types of people in this world... those who bring you peace and those who don't.

KateLynne

isn't it the same as hot crps in the articles that are in these pages/ sites? i think there is no difference, maybe somebody else can tell me if i am wrong?

jeisea

http://crps-rsd-a-better-life.blogspot.com/
crps/rsd a better life