Useful Websites & Links

[Bobbi]

Australian Reflex Sympathetic Dystrophy Support Group
http://www.ozrsd.org/

Canadian RSD Network
http://www.canadianrsd.com/

Complex Regional Pain Syndrome
Information about complex regional pain syndrome from the American Academy of Family Physicians.
http://familydoctor.org/238.xml

Complex Regional Pain Syndrome Information Page
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm

For Grace - Changing the World of RSD
http://www.forgrace.org/

International Reflex Sympathetic Dystrophy Foundation
http://www.rsdinfo.com/

Pain Information
http://www.painrelieffoundation.org.uk/paininfo/paininfo_rsd.html

Pain Medicine & Palliative Care: Pain Medicine
Complex Regional Pain Syndrome (CRPS)
http://www.stoppain.org/pain_medicine/crps.html

Reflex Sympathetic Dystrophy
http://orthoinfo.aaos.org/brochure/thr_report.cfm?Thread_ID=50

RSD Alert
Information about Reflex Sympathetic Dystrophy Syndrome, including personal experience, data and links to support groups.
http://www.rsdalert.co.uk/

Reflex Sympathetic Dystrophy Association of America
http://www.rsds.org/

Reflex Sympathetic Dystrophy Association of California
http://www.rsdsa-ca.org/

Reflex Sympathetic Dystrophy UK Online Support Group
http://www.rsd-crps.co.uk/

[Jennybean]

http://www.rsdhope.org/

[Jo*mar]

http://www.healiohealth.com/rsd-reflex-sympathetic-dystrophy-syndrome.html

******************************************
from-
http://www.rsdrx.com/rsdpuz4.0/puz_6.htm
RSD PUZZLE #6
Physical Therapy

"There have been references in the literature that physical therapy can aggravate pain and RSD. Yet in every outline of treatment for RSD, the use of physical therapy is emphasized. These two statements seem to be contradictory."

Both statements are absolutely true. Excessive exercise and physical therapy that causes fatigue, pain, and distress to any part of the body, only flares-up and aggravates the inflammation and pain of RSD. On the other hand, the commonest aggravators of RSD are bed rest, inactivity, application of ice, and the use of assistive devices. In RSD, the best treatment is eustress not distress.

Distress refers to the stress of prolonged bed rest and inactivity. Like any other machine, prolonged idling of the body is distressful and causes damage to the body. Especially in RSD, the prolonged bed rest results in aggravation of pain and insomnia. The RSD patients suffer from severe, chronic insomnia due to the constant allodynic pain as well as due to the aggravation of constriction of blood vessels secondary to inactivity. One of the earliest signs of RSD is a restless night with the patient constantly being fidgety and changing position all night as well as having to get up and walk to get some relief.

The second form of distress is too much exercise, prolonged physical therapy.

The RSD patient has to learn that they will have pain with too much exercise, and the patient will have more pain without exercise. The patient will have to find a happy medium. The patient will have to rest and exercise frequently. Three days a week in the P.T. Department is not enough. The RSD patient should continue the instructions of the physical therapist from morning to night with equal periods of rest and exercise. The patient should learn from the human heart which beats approximately once a second for 80 to 90 years without taking a vacation. The reason is the heart beats half a second and rests half a second. The same principle should apply to physical therapy in RSD.



H. Hooshmand, M.D.

[firemonkey]

http://www.doaj.org/

[Jo*mar]

a variety of links - Pain/RSD/CRPS - various therapies

Chronic Pain Resources
(great handbook on pain and common treatments)lifeinpain.com/book/print/10
(great list of popular and medical books on pain) www.noigroup.com/booklist.html
(lots of self help articles on dealing with pain) www.painsupport.co.uk
(an osteopath's view of a number of conditions) www.painrecoveryonline.com
(pain and the law) www.painandthelaw.org/intro/index.php
www.partnersagainstpain.com
www.painconnection.org
www.NationalPainFoundation.org
(collection of links) members.tripod.com/~Catnip100/LINKS.html

Reflex Sympathic Dystrophy, Complex Regional Pain Syndrome
(RSD and RSI) www.ctdrn.org/rsinet/archive/rsinet36-mar99.html
(what is RSD and other RSD questions) www.rsdrx.com/rsdpuz4.0/001.htm
(mayo clinic treatment algorithm, Feb 2002) http://www.mayoclinicproceedings.com...sp?AID=39&UID=
www.acofp.org/member_publications/canov_02.html#
www.rsdhope.org
www.rsdsa-ca.org

General Medical Sites
Anatomy
(muscles) www.teleemg.com/new/musqa.htm
(muscles) http://www.meddean.luc.edu/lumen/Med.../mml/index.htm
(perhiperal nerves) www.teleemg.com/new/pnsqa.htm
(nerve entrapments) www.teleemg.com/new/layarmleg.htm
(nerve) www.med.mun.ca/anatomyts/nerve/nerve.htm
(upper body dermatomes) chirogeek.brinkster.net/upper_dermatomes.jpg
(lower body dermatomes) http://www.chirogeek.com/000_Sciatic...nfor.htm#ccccc
(nerve - dermatomes) www.aafp.org/afp/971200ap/mcknight.htm
(very comprehensive eduational anatomy site, muscles, veins and arteries, nerves )mywebpages.comcast.net/wnor/homepage.htm

Medical Research Sites
(free comprehensive database of summaries of medical research) www.Pubmed.org
(service to order medical journal articles) mountzion.ucsfmedicalcenter.org/library/loandoc.html
(list of medical libraries open to the public) www.nlm.nih.gov/medlineplus/libraries.html
(selected medical journal articles) www.medscape.com

Prescription Drug Information
(physcian's drug info sheets translated for lay people) www.pdrhealth.com/drug_info
www.rxlist.com
www.drugintel.com/

HNPP
http://www.hnpp.org/varieties.htm
http://www.hnpp.org/surgery.htm
http://www.hnpp.org/symptoms.htm

Triggerpoints and referred pain and stretching:
http://www.triggerpointbook.com/index.html
http://triggerpoints.net/_sgg/m1m1_1.htm
http://www.pressurepointer.com/pain_reference_chart.htm
http://altmedicine.about.com/library...ressure+points
http://www.drlowe.com./triggerpoint.htm
http://www.erikdalton.com/articleduramater.htm
http://deeptissue.com/learn/learn.htm
http://www.edgelow.com/
http://www.rossiter.com/aboutus/tellmemorerossiter.asp
http://www.egoscue.com/htdocs/index.asp
http://www.rsirescue.com/
http://www.cascadewellnessclinic.com...s/tip0008.html
http://www.purehealthsystems.com/mus...in-relief.html
http://www.alaskaelectrolytes.com/
http://www.howibeatrsi.com/
http://www.emofree.com http://www.emofree.com/downloadeftmanual.asp
http://www.trigger-point-injections.com/index.htm

Myopulse
http://www.drkaslow.com/html/physical_therapy.html
http://www.drkaslow.com/html/our_man..._approach.html

Postural work/info
http://www.somaticsplus.com/ws2.html
http://www.om-rehab.com/treatments.htm
http://www.sportsinjurybulletin.com/...acic-spine.htm

Chiropractic care info- a good one can help with many symptoms:
http://www.upcspine.com/self.htm
http://www.uppercervical.org/subpag...b/about_faq.php
http://www.spineuniverse.com/index.html
http://www.coloradochiropractic.org/.../glossary.html

Anatomy links
http://www.gwc.maricopa.edu/home_pag...rial_Small.htm
http://www.gwc.maricopa.edu/class/bi...cle/mustut.htm
http://www.meddean.luc.edu/lumen/Med...em/learnit.htm
http://mywebpages.comcast.net/wnor/homepage.htm
http://catalog.nucleusinc.com/genera...=&TL =512&A=2
http://www.ptcentral.com/muscles/
http://www.realbodywork.com/

ART-active release technique
http://www.google.com/search?client=...=Google+Search

Electrotherapy
http://www.vitality-web.com/backstor...Stimulator.htm
http://www.medi-stim.com/overview.htm
http://www.rehabpub.com/features/82004/3.asp
http://www.spine-health.com/topics/c...ctro/el01.html
http://www.skylarkdevice.com/web-site/ele_thera.htm
http://www.bmls.com/electrodes/epc.php
http://rehabilicare.com/protocol.html

Laser/ Infared/ far infrared
http://laser.nu/
http://www.purehealthsystems.com/infrared.html
http://www.purehealthsystems.com/mus...in-relief.html
http://www.toolsforwellness.com/far-infrared.html

CMPS & RSD
http://www2.rpa.net/~lrandall/fmslog.html
http://www.geocities.com/barmellin/myo.html
http://members.aol.com/fibroworld/mps.htm
http://thyroid.about.com/od/fibromy...instarlanyl.htm
http://www.triggerpointbook.com/index.html
http://www.triggerpoint.fcpages.com/_sgt/f10000.htm
http://www.triggerpointbook.com/triggerp.htm
http://www.medicineau.net.au/clinic...Myofascial.html
http://www.sover.net/~devstar/
http://www.rsdinfo.com/
http://www.rsdhope.org/ShowPage.asp?PAGE_ID=4
http://www.rsds.org/2/what_is_rsd_crps/index.html

[Jo*mar]

more links- alternative health/ergonomics/dx/ergo/voice software

Medical/Wellness/Alternative
http://www.wellnessresources.com/pro.../protocols.htm
http://www.vitamin-insight.com/dieta...anagement.aspx
http://www.nwhealthsolutions.com/
http://www.mercola.com/index.html
http://www.consumerlab.com/
http://www.youngagain.com/wellnesstest.html

Homeopathy
http://www.abchomeopathy.com/simplified.php
http://www.hmedicine.com/news/guide/single/singles/all
http://www.webhomeopath.com/en/jsp/login.jsp

Alternatives
http://www.holisticmed.com/www/bodywork.html
http://www.whatreallyworks.co.uk/sta...article_ID=253
http://www.wendi.com/html/pain.html
http://www.NationalPainFoundation.org
http://www2.rpa.net/~lrandall/index.html

RX helpers
http://www.drugintel.com/
http://www.drugs.com/drug_interactions.html
http://www.drugdigest.org
http://www.drugdigest.org/DD/Home/0,4082,,00.html

Diagnosis helpers
http://www.wrongdiagnosis.com/
http://myelectronicmd.com/
http://www.medical-library.org/mddx_index.htm
http://www.google.com/search?q=suppl...en-US:official
http://www.lifechallenges.org/create/creative.html

Ergonomics links:
http://www.working-well.org/index.html
http://www.remedyint.com/ergoanswers/wrist_hand.html
http://www.office-ergo.com/alternat.htm
http://ergo.human.cornell.edu/ErgoTi...tationmain.htm
http://www.cdc.gov/niosh/topics/ergonomics/
http://ergonext.com/

voice software
http://ivos.comunx.com/
http://www.talkingdesktop.com/frequent.htm
http://office.microsoft.com/en-us/as...664011033.aspx

[Sandel]

Dr Hooshmand's site tries to answer the questions you may have about your RSD/CRPS here:

http://www.rsdrx.com/rsdpuz4.0/001.htm

An excelent resource I recomend it.
Sandra

[Jo*mar]

I don't know if this will work or fit for RSD but for those that have other pain /muscle conditions it might.

Default The Institute for the Study and Treatment of Pain
this link was posted on the sorehand email list -

I haven't seen anything like it posted here yet
{I may have just missed or forgotten about it}

http://www.istop.org/homecontent.htm

http://www.istop.org/maintreatment.htm

[Intramuscular Stimulation (IMS)
Supersensitivity and muscle shortening cannot be operated on and ‘cut away,’ while ‘painkillers’ and other analgesic pills only mask the pain (often poorly) and promote toxicity, compounding the problem. Neuropathy only responds to a physical input of energy.

Intrasmuscular Stimulation (IMS) is a total system for the diagnosis and treatment of myofascial pain syndromes (chronic pain conditions that occur in the musculoskeletal system when there is no obvious sign of injury or inflammation). IMS is grounded in Western Medical Science, and has a solid foundation in its radiculopathic model of pain, which is now supported by many experts in the field. The treatment, which utilizes acupuncture needles because they are the thinnest implements available that are designed to penetrate deep within muscle tissue, specifically targets injured muscles that have contracted and become shortened from distress.]

READ Dr. Gunn's paper on Intramuscular Stimulation: The Technique (PDF) http://www.istop.org/newbrowserpages.htm/imspaper.pdf

[roofee]

Another good site...

www.rsds-crps-news.blogspot.com

[Emily82905]

Another good site...

www.rsds-crps-news.blogspot.com

any good RSD doctors in NY?

[Jo*mar]

posted on the forum by LisaM but I wanted to add it here too.

[I always, always, always check out my new meds here:

www.askapatient.com

because these are REAL PEOPLE who have taken the medications and post their experience with them. I have found that many times people have similar experiences with drugs, that probably SHOULD be listed as a side effect in the pharmaceutical insert, but isn't. I also read that page because I want to know if something I experience while on the medication was experienced by anyone else. The package insert does't always tell you everything.]

[Rainbow422]

Don't know if this is a repeat but I love this site. The area where members suggest and give advice was really helpful for me.

This is Canada's, promoting awareness of RSD and Crps

http://www.rsdcanada.org/parc/english/index.html

[InHisHands]

Here are some RSD forum sites:
http://groups.msn.com/RSDWontBringMeDown
http://groups.msn.com/RSDOutreach/welcome.msnw
http://z6.invisionfree.com/HELPRSD_Forums/index.php?act=idx
http://groups.msn.com/InHishandswithRSDandChronicPain/messages.msnw
http://rsd-crps.co.uk/phpBB2/index.php

THIS site is the very very very best RSD/ CRPS forum I've found, though! I love it here, and have gotten lots of help, ideas and suggestions. :)

[mollymcn]

Thank you - this is a terrific list.

[InHisHands]

RSD fact and fiction:
http://www.rsdhelp.co.uk/facts.htm

[InHisHands]

http://www.upmc.com/HealthManagement/ManagingYourHealth/HealthReference/Diseases/?chunkiid=96853

http://www.pain.com/sections/pain_resources/library/abstract.cfm?ID=3525&next_page=1&startrec=1&RecordDisplays=20&Search_phrase=rsd

[InHisHands]

Just found this... maybe someone here is interested :)

http://puppybraille.livejournal.com/tag/surgery

This lady is blind and has RSD.

[InHisHands]

http://www.rsdawareness.com/

[Jo*mar]

Medications /Interaction checkers and Pill Identification links


http://www.drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html

http://www.drugs.com/drug_interactions.html

http://gsm.about.com/interact/inter.asp

http://www.healthatoz.com/healthatoz/Atoz/drugdb/drugGuideHome.jsp

http://www.pharmer.org/identification


__________________

[InHisHands]

http://rsdescape.com/

[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/english/therapy/drvanderlaan.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.

[Jo*mar]

Pictures and Photos thread

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

[InHisHands]

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

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

http://www.webmd.aol.com/pain-management/guide/what-is-chronic-pain

[Bronco4586]

RSD fact and fiction:
http://www.rsdhelp.co.uk/facts.htm

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

[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/attachment.php?attachmentid=1036&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/attachment.php?attachmentid=1037&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/attachment.php?attachmentid=1039&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/attachment.php?attachmentid=1054&d=1177433611
File Type: pdf Tissue hypoxia in complex regional pain syndrome.pdf (205.1 KB, 0 views)http://neurotalk.psychcentral.com/attachment.php?attachmentid=1055&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/attachment.php?attachmentid=1058&d=1177436289

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

[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 :D

[KateLynne]

...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 :D


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

[jeisea]

http://groups.google.com/group/crpsrsd
CRPS/RSD taking control | Google Groups

[jllenrad]

This is a list of Pain sites - I hope someone may find useful.

American Academy of Pain Medicine (www.painmed.org) is the primary organization for physicians practicing the specialty of Pain Medicine in the United States. Pain Medicine is a discrete medical specialty recognized by the American Medical Association

American Board of Pain Medicine certifies qualified physicians in the field of Pain. (www.abpm.org)

American Chronic Pain Association Home Page (www.theacpa.org)

American Pain Foundation is a nonprofit information resource and patient advocacy organization serving people with pain. Their mission is to improve the quality of life of people with pain by providing practical information for patients, raising public awareness and understanding of pain, and advocating against barriers to effective treatment. (www.painfoundation.org)

American Pain Society is a multidisciplinary organization of basic and clinical scientists, practicing clinicians, policy analysts, and others. The mission of the American Pain Society is to advance pain-related research, education, treatment and professional practice. (www.ampainsoc.org)

Chronic Pain Resources contains links, chat lines, and other issues for chronic pain support (www.chronicpain.net)

Diseaseworld.com contains links and information about pain and other chronic diseases that are available on the Internet.

eMedicine (www.eMedicine.com) provides an on-line medical reference library, well organized and easy to use (their logo: Medical Textbooks for Health Professionals) and useful links to other medical and consumer sites

Medical Matrix (www.medmatrix.org) is an extensive free directory of selected medical sites with an extensive list of specialty links. The site also provides peer-reviewed, annotated, updated clinical medicine resources, and access to journals, textbooks, and MEDLINE. The site is free, but you must first register.

MEDLINE ACCESS from DocMD.com (DocMD.com/Medline.asp)

National Foundation for the Treatment of Pain is a not-for-profit organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them (www.paincare.org)

National Library of Medicine (www.nlm.nih.gov) is the site of the National Library of Medicine's Internet Grateful Med. Every significant program of the Library is represented, from medical history to biotechnology. Multiple databases are available free of charge, including MEDLINE, CancerLit and AIDSline.

Ohio Cancer Pain Initiative is a nonprofit organization committed to ensuring that persons in Ohio with cancer pain will receive optimum pain management through cancer pain management education for health care professionals and the public. (www.ocpi.org)

Pain site from Canada with links to other pain management sites (www-hsl.mcmaster.ca/tomflem/pain.html)

Pain.com bills itself as the World of Information on Pain. It is sponsored by the Dannemiller Memorial Educational Foundation and provides extensive resources, consumer and physician information on a variety of pain issues including cancer pain, regional anesthesia, and CME programs. Pain.com is one of the most comprehensive list and links to pain sites and organizations on the web.

Pain.roxane.com is a site devoted to commitment to all aspects of palliative care

Painnet.com was developed by physicians, educators, and business professionals, to provide educational and support services to physicians, and other health care professionals. Pain Net, Inc.'s services in the arena of pain medicine/ management and functional restoration include credentialing by procedure, educational programs, managed care, patient & physician advocacy, practice development, and quality assurance.

Washington-Alaska Cancer Pain Initiative is a non-profit, multidisciplinary movement directed towards improving the management of cancer pain throughout the states of Washington and Alaska. (www.fhcrc.org)

[mainiac]

http://www.rsdsupport.com

[InHisHands]

What is RSD???

For those who don't really know, please watch this video clip:
http://i109.photobucket.com/albums/n65/DiP_012/VIDEO/th_RsdVIDEO.jpg (http://s109.photobucket.com/albums/n65/DiP_012/VIDEO/?action=view&current=RsdVIDEO.flv)

[basstracker]

hello can i add a link here ? www.rsdhope.org thisis a great site that i joined & has alot of good info there. thank you, basstracker.

[InHisHands]

Here is a whole page on alternative treatments:
http://www.rsdcanada.org/parc/english/therapy/alt-treatment.html

[InHisHands]

FOR GRACE video clips:
http://www.youtube.com/watch?v=S1Qn5rus4Gg
http://www.youtube.com/watch?v=7OgAzmgX28w
http://www.youtube.com/watch?v=5oNxBe6LiLI


Dr. Schwartzman- treating Lindsay Wartenburg with the Ketamine coma:
http://www.youtube.com/watch?v=n5aVCJ8-Ahw

There are many other RSD video clips that you can find by searching www.youtube.com ;):grouphug:

[InHisHands]

a site that a friend of mine made for RSDers:
http://fightingagainstrsd.tripod.com/index.html

[Sandel]

A short abstract on Cytokines and remission:

http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&refid=2&id=48DDE4A73E09A969852568880078C249&c=&newsid=852571020057CCF685257365003EB914&u=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=17898403&ref=/news/content.nsf/SearchResults?openform&Query=complex%20regional%20pain%20syndrome&so=date&id=48DDE4A73E09A969852568880078C249&Search_Box=All%20DG

Another short abstract of a case of Chorea as a side effect of gabapentin:

http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&refid=2&id=48DDE4A73E09A969852568880078C249&c=&newsid=852571020057CCF6852573780029FEB9&u=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=17938990&ref=/news/content.nsf/SearchResults?openform&Query=complex%20regional%20pain%20syndrome&so=date&id=48DDE4A73E09A969852568880078C249&Search_Box=All%20DG

Delayed recovery and late development of complex regional pain syndrome in patients with an isolated fracture of the distal radius: prediction of a regional inflammatory response by early signs:
(predicting RSD early via inflamitory blood count!)

http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&refid=2&id=48DDE4A73E09A969852568880078C249&c=&newsid=852571020057CCF68525734F00298848&u=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=17785748&ref=/news/content.nsf/SearchResults?openform&Query=complex%20regional%20pain%20syndrome&so=date&id=48DDE4A73E09A969852568880078C249&Search_Box=All%20DG

Electrotherapy modalities offer patients much-needed pain relief:

http://www.rehabpub.com/issues/articles/2007-11_04.asp

Questions of balance in chronic pain, Loss of proinflammatory and antiinflammatory balance in CRPS:

http://www.painjournalonline.com/article/PIIS0304395907005192/fulltext

This interesting study links the central nervous system (CNS) and RSD/CRPS by observing that the motor system shows adaptive changes in some folks with RSD:

http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&refid=2&id=48DDE4A73E09A969852568880078C249&c=&newsid=852571020057CCF685257300002BCD1C&u=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=17575278&ref=/news/content.nsf/SearchResults?openform&Query=complex%20regional%20pain%20syndrome&so=date&id=48DDE4A73E09A969852568880078C249&Search_Box=All%20DG

[Sandel]

This news story was done on Wednesday November 14 2007, and is in video form and written. a good one to use to explain to folks in a very short time, I find the shorter the explanation the less you loose peoples interest and understanding. a starter.

http://www.wcnc.com/news/topstories/stories/wcnc-111307-krg-chronicpain.2258f8f.html

[Sandel]

http://www.hbotxofpalmbeach.com/abstracts_study.html

http://www.answers.com/topic/hyperbaric-chamber-military?cat=health

[Sandel]

http://books.google.com/books?id=7dA8qk5unyoC&pg=PT37&lpg=PT37&dq=hbot+side+effects&source=web&ots=t3gCLlcbRC&sig=NmMfp33l1DDzErmy0suRvGoizcI#PPP1,M1

Throughout the world -- in China, Japan, Cuba, Canada, Russia, and most of Europe -- healing therapies using oxygen, ozone, and hydrogen peroxide have been common for treating a wide array of diseases, including cancer, HIV/AIDS, and arthritis. Yet in the United States, where the mainstream medical community is dependent upon funding from the pharmaceutical industry for research and physician training, these highly efficacious and relatively inexpensive therapies have been largely ignored. Dr. Pavel Yutsis, Medical Director of the CAM Institute for Integrative Therapies, has been using these biooxidative techniques for more than twenty years, from the beginning of his career in his native Russia. In Oxygen to the Rescue, Dr. Yutsis explains the difference between oxygenation and oxidation. He describes the four main types of oxygen therapy: -- Hyperbaric Oxygen Therapy (HBOT) -- Hydrogen Peroxide Therapy -- Ozone Therapy -- Photoluminescence -- or ultraviolet radiation of blood (UVIB), and discusses conventional uses versus experimental/controversial uses for each, as well as the means of administering these therapies.For example, HBOT is typically used by mainstream medicine to promote healing of burns and skin grafts, as well as to treat carbon dioxide poisoning and smoke inhalation. Hydrogen peroxide delivers oxygen to the blood and makes it possible for the body to use oxygen more effectively. It regulates sugar, enhances immune system function, and helps cells produce energy. Oxygen to the Rescue provides both the findings of scientific research and anecdotal evidence demonstrating that these underused therapies deserve to be acknowledged among frontline medicine in the UnitedStates

[Sandel]

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?


Most of the articals are relating I think to cold RSD

[Sandel]

...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 :D


I think type 1 RSD is not hot CRPS/RSD Rogue, hot RSD is either a subtype of RSD or a stage of RSD.. if type 2 RSD has no hot stage then I would tend to think it's more of a subtype of RSD or that type 2 is?? hmm fun stuff to wrap your bain about aye. But actualy I think it more likely that with type 2 also known as causalgia it progresses through to the later stages so fast that you have little or no hot stage of RSD in the process. That is how my RSD progressed as well.

I thought I should bump your request up and provide a link to a site that should shed some light as well.

http://www.rsdrx.com/causalgia.htm

:hug:

[Sandel]

http://shsskip.swan.ac.uk/Information/crps.htm

[Sandel]

Seven abstracts:

1) Anatomical relevance of Some Acupuncture Points in the Head and Neck Region That Dictate Medical or Dental Application Depending on Depth of Needle Insertion.
2) Expression of Interleukin-6 mRNA in Ischemic Rat Brain after Electroacupuncture Stimulation.
3) Detection of Ear Acupuncture Points by Measuring the Electrical Skin Resistance in Patients Before, During, and After Orthopedic Surgery Performed under General Anesthesia.
4) Protective Effects of Electroacupuncture and Salviae Miltiorrhizae on Myocardial Ischemia/Reperfusion in Rabbits.
5) Does a Viral Infection Cause Complex T. Regional Pain Syndrome? (could be a typo error?)
6) Myocardial Protective Effects of Electroacupuncture and Hypothermia on Porcine Heart After Ischemia/Reperfusion.
7) The Importance of Bi-Digital O-Ring Test in the Treatment of Multiple Hepatic Abscesses- A Case Study.

http://www.cognizantcommunication.com/filecabinet/Acupuncture/acu28abs3.html

[Sandel]

Are Cardiac Syndrome X, Irritable Bowel Syndrome and Reflex Sympathetic Dystrophy Examples of Lateral Medullary Ischaemic Syndromes?


http://www.level1diet.com/research/id/11077

[Lindecker01]

Hi,
I am in Colorado and there is a lady out here named Helen who started www.rmrsd.org She is working on Goverment reconginition and funding for the cure. Go and check out her website and be sure to add yourself to the database that she is creating to show the need. Take care all of you and lets pray for that cure.
Lindecker01

[NikonKid]

http://painpathways.org/

A new magazine for patients ...very informative for people in pain and all proceeds go to research :)

It's very exciting to me to have a magazine that has so much information in it :)

Jeanne

[Stacie]

www.rsdchat.org

[Chemar]

http://neurotalk.psychcentral.com/chat/flashchat.php

[ali12]

Hi guys,

Here is a link to a forum that I created specificaly for teens and young people suffering from RSD/CRPS

We are currently waiting to try and get a domain name so that the forum will hopefully go through Google but the link is: http://www.topbb.com/rsdkids/

If you know of any young people suffering from RSD who need support, can you please send them to my site/forum?

Thanks and I have also put the link to Neurotalk on the forum

Alison

[Debby]

I came across this book thru an Fibromyalgia newsletter I receive in my email. I thought perhaps it might come in handy to people in these age groups. To find it you need to Google it.

"Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties."

DebbyV

[Jo*mar]

Are you In a crisis? call for help!

[Hotline Numbers and Information.
I thought it would be helpful to have hotline numbers in one place that is easy to find and easy to access quickly in an emergency situation.

Phone numbers-

1-800-273-TALK
1-800-273-8255

1-800-SUICIDE
1-800-784-2433

Deaf Hotline for TTY users -
1-800-799-4TTY
1-800-799-4889

Teen Hotline-
1-888-747-TEEN
1-888-747-8336


Canadian numbers are listed by Province on this site-
http://suicidehotlines.com/canada.html

Other International hotlines are listed by country on this site-
http://suicidehotlines.com/international.html


Websites-

http://suicidehotlines.com/

http://suicidehotlines.com/national.html

Coping with a Crisis

If you need immediate help or if you are having thoughts of death or suicide, call
1-800-273-TALK or if you need immediate assistance call 911
or go to a hospital emergency room.]

http://neurotalk.psychcentral.com/thread4982.html

above info from our Survivors of Suicide {SOS} forum sticky thread

and
the SOS forum link - if anyone ever needs to talk about it these members would love to help.
http://neurotalk.psychcentral.com/forum29.html

[AshFreeze]

Since the Canadian RSD newtwork has collapsed there are two Canadian Sites..

Promoting Awareness of RSD/CRPS in Canada (P.A.R.C.).

[DianaA]

Infohungry just sent me this link for me share with all of you. I hope you all find this interesting.
Di

http://crps.physiciansforpatients.com/

We are a group of doctors dedicated to helping people online in a way to help with high health care costs. The idea is to give a resource to people that need alternative opinions and information.There are a lot of people that have limited access to health care (either uninsured or simply can't afford it). This way it is easier for a smaller number of physicians to help a larger number of people.

Dr. Colantonio is the doctor. He is board certified in both pain medicine and anesthesiology (so he is up to par on his nerve blocks). He trained at Duke University and Oregon Health and Science center.

If you think any of the people in your group might benefit from this resource, please consider sending out a group message.
(we are JUST getting started.)

[Mslday]

Courtesy Jim Broatch of the RSDSA:

Author: Schwartzman RJ, Erwin KL, Alexander GM
Title: The Natural History of Complex Regional Pain Syndrome
Source: Clin J Pain. 2009;25:273-280.

http://rsds.org/2/library/article_ar...lexanderGM.pdf

Here's the abstact:

Objective: Complex regional pain syndrome (CRPS) is a severe chronic pain condition characterized by sensory, autonomic, motor, and dystrophic signs and symptoms. This study was undertaken to expand our current knowledge of the evolution of CRPS signs and symptoms with duration of disease. Method: This was a retrospective, cross-sectional analysis using data extracted from a patient questionnaire to evaluate the clinical characteristics of CRPS at different time points of disease progression. Data from the questionnaire included pain characteristics and associated symptoms. It also included autonomic, motor, and dystrophic symptoms and also initiating events, ameliorating and aggravating factors, quality of life, work status, comorbid conditions, pattern of pain spread, family history, and demographics. Comparisons were made of different parameters as they varied with disease duration.

Results: A total of 656 patients with CRPS of at least 1-year duration were evaluated. The average age of all participants was 37.5 years, with disease duration varying from 1 to 46 years. The majority of participants were white (96%). A total of 80.3% were females. None of the patients in this study demonstrated spontaneous remission of their symptoms. The pain in these patients was refractory showing only modest improvement with most current therapies.

Discussion: This study shows that although CRPS is a progressive disease, after 1 year, the majority of the signs and symptoms were well developed and although many variables worsen over the course of the illness, the majority demonstrated only moderate increases with disease duration.

Originally posted by Fmichael under http://neurotalk.psychcentral.com/thread88983.html

MsL

[Sandel]

RSD/CRPS Research and Developements. (my ongoing project)

http://www.facebook.com/funnygirl2?v=feed&story_fbid=173203893596#/pages/RSDCRPS-Research-and-Developements/172242468621?ref=ts

Research articals and studies and new developements on the subject of RSD/CRPS, on a page I made on facebook in no paticular order.. if I see the need for a particular subject mater I post a relevent study.

Sandra