We don't issue many Newsletters but our mailing list grows and grows; I'm sorry if you've been waiting a long time for this one. Thank you to all the people who have sent in information and stories. Your contributions help the many RSD/CRPS patients, carers and other interested people who visit the website - and that's a lot of people!
RSD Alert is approaching seven years old; that's a long time in Internet terms and things have changed greatly over that period. When we started it was hard for patients to find useful information about RSD and even harder for them to contact anyone else who had the condition. Frustration and loneliness made many people desperate, and we often heard from people who felt almost suicidal. That doesn't often happen now, so people must be finding help and information much quicker. Thanks to the Internet - and thanks to you. Shared information is good for us all.

Featured in this Newsletter are-

1. Science says it's real
2. Italian RSD website
3. Polyneuropathy
4. RSD Conferences 2006
5. Medifocus Guidbook
6. What is RSD?
7. Who are RSD Alert?
8. Mailing List

1. Science says it's real!
DG News reports that researchers at Massachusetts General Hospital, Boston, USA found evidence of physical abnormality underlying RSD. They found that skin affected by CRPS Type I appears to have lost some small-fibre nerve endings. To quote the report "The fact that CRPS-I now has an identified cause takes it out of the realm of so-called 'psychosomatic illness.' " We'll have to forgive them for the implications of that sentence - but it least someone took the trouble to make the study and discover what we were telling them anyway all along. This pain is real; we didn't invent it and we don't like it!

To read more about the study go to www.docguide.com/news/content.nsf/news/852571020057CCF685257107005273F6?Open&id=48DDE4A73E09A969852568880078C249&count=10.

2. Italian RSD website
The reputable RSD Foundation recently launched a website in Italian, complete with news and video presentations. If you are an Italian speaker or you know an RSD sufferer who would appreciate information in Italian language you can find the site at www.rsdfoundation.org/en/ItalianIndex.html

3. Polyneuropathy
This is a request for feedback. One of our RSD Alert Team has been diagnosed with Polyneuropathy, which we find is also sometimes called "stocking and glove neuropathy". We've been to our books and our web browsers, and the symptoms look somewhat familair, but nothing we can see makes any mention of RSD/CRPS as an iniating cause or related problem. Here's the question - Do any of our readers have any knowledge or experience of RSD being linked to Polyneuropathy?

Here are some references to pages about this condition -
www.stoppain.org/pain_medicine/content/chronicpain/polyneuropathy.asp
www.merck.com/mmhe/sec06/ch095/ch095h.html
en.wikipedia.org/wiki/Polyneuropathy

4. RSD Conferences
Britain: There will be no RSD-UK Conference this year. (Apologies for the miselading information given in the mailed version of this newsletter).
USA: The Annual Conference of American RSD Hope will take place on 3rd and 4th November 2006 in South Portland, Maine. The cost is $65 and there are only 200 places. For more details go to www.rsdhope.org/ShowPage.asp?page_id=48

5. Medifocus Guidebook
A new Guidebook to medical conditions can be bought as a traditional book (on paper) or downloaded as an electronic book (pdf format). It includes a 96 page section on RSD that can be obtained as a separate ebook. It includes cross references to many other publications and websites and provides solid information on the condition, its treatment and the resources available to help patients. To view more detailed information go to www.medifocus.com.

6. What is RSD?
Not all our website visitors have prior knowledge about RSD. However you found us, we are glad you came and would like you to learn about this quite common, but often unrecognised chronic pain condition. RSD stands for Reflex Sympathetic Dystrophy and, because of lack of coordination among health professionals working on this in the past, it is also known under several other names. The 'official' name with the professionals is Complex Regional Pain Syndrome (CRPS). The key word is "pain" and RSD pain is something you do not want to experience. Typically it is a hot burning sensation that has been compared to putting your hand into a pan of boiling water and keeping it there. It is a condition that makes no sense, because it typically follows injury (or surgery) to a limb (arm, hand, leg, ankle) that has already healed by the time the RSD symptoms manifest. It often has other symptoms like paralysis, swelling, redness, shiny skin surface, unusual growth of skin hairs or illogical feelings of cold or heat. The true causes have not been identified, but it is clearly centred in the nervous system. Many patients get past the stage of visible swelling or discolouration and still suffer extreme pain, which results in a lot of misunderstanding. Work colleagues, friends, family, and sometimes even the doctors can't understand how the patient can be suffering so much with no visible symptoms. That's why RSD patients often feel lonely. If you do not have RSD, but you know someone who does - give them all the support you can; they need your care.

7. Who are RSD Alert?
RSD Alert is a very popular website. Over the past 12 months we have welcomed over 433,000 visitors most of whom found the answers they needed and went away. Some of them wrote to our correspondence Team and I give credit to our international team of volunteers who handle those emails. We want to spread information about RSD/CRPS and help people cope with this painful condition. We do not raise funds; we do not aim to be a "help-group"; we are not a club; we are not a charity. We work alongside the many other groups and organisations who do all those things and to give them support and encouragement. We describe ourselves as the international e-magazine for the RSD world.

The most popular section of our site is Drugs on RSD Alert which has many pages that come top of the list in major search engines. Other popular sections are Storyboard and Treatments on RSD Alert. RSD Alert is coordinated from a small office in a private home in Bristol, England. And the reason why we are here is because some of us found relief as the result of quick diagnosis, good information and appropriate care. We want more people to share that privilege.

Keep sending in information, news and suggestions to keep the site up-to-date. And keep telling other people about RSD.

8. Mailing List
You received this Newsletter because you are on our Mailing List. You got on the list because you wrote to us, you signed our Guest Book or you submitted information or your story for publication. We do not share our Mailing List with anyone… it is confidential and is kept in only one place. If you prefer not to be on the list, please send us an email with the Subject "Please remove". If you have received this Newsletter from someone else and want to be added to the list, please send us an email with the Subject "Please add my name".

We don't send out many Newsletters (this is our tenth in six years) but we hope you find them encouraging.

Thanks for taking an interest.
Be as pain-free as you can but, in any case... don't give up.

Derrick Phillips
(RSD Alert Editor)