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Resources
 

CRPS- and Pain-related Websites
A number of sites that promote awareness, education, and communication among the community. Contains chat rooms and online support groups.

Suicide Survivor Support Resources

Resources for Veterans with CRPS

Opioids911-Safety is a single-purpose, independent, noncommercial, Internet-based educational activity from Pain Treatment Topics for patients and their caregivers on the proper and safe use of opioid pain relievers. Our mission is to provide an understanding of opioid analgesics and their various risks, and to suggest specific actions for preventing opioid-related problems. Instruction also is provided on recognizing opioid problems if they do occur and on being prepared for what to do during an emergency. This is a first-of-its-kind educational program for patients/caregivers solely dedicated to all aspects of opioid safety. Plus, there are special instructions and resources for healthcare providers in using Opioids911 at the point-of-care.

Communities and Blogs
For more online resources, click here.

RSDSA on Twitter

RSDSA on Facebook

CRPS/RSD A Better Life Blog

Military and Veterans with RSD/CRPS Facebook Group

Mothers Against Chronic Pain, is an organization of Moms, Dads, and concerned family members and friends that are looking for better ways to treat, cure, and take care of children who suffer from chronic pain conditions such as CRPS, EDS, and others.

NeuroTalk Communities: RSD and CRPS

R.A.F.T.S - Raising Awareness for Those Suffering

Reflex Sympathetic Dystrophy and Acupuncture Treatment (Facebook Page)

The Definitive Link Library for Reflex Sympathetic Dystrophy (CRPS), Chronic Pain, and Similar Conditions

Here2Help:Teen Scene is a Facebook support group for teens suffering with RSD.

Brochures
You can download these publications using Adobe Acrobat Reader.
Download the free reader here.

Clinical Treatment Guidelines

Helping Children/Youth With CRPS Succeed in School
A guide for teachers, parents, and school administrators on accommodating the special needs of children with CRPS.

Telltale Signs of CRPS HandiCard
A two-sided card with pain scale on one side and signs of CRPS on the other.
Up to 5 cards free to members. Additional cards are $0.10 for members, $0.15 for nonmembers. Bulk (100): $7 for members and $10 for nonmembers.

Recognizing, Understanding, and Treating CRPS
Recently revised, this brochure details the signs and symptoms of CRPS and presents some treatment options.

Treating Complex Regional Pain Syndrome: A Guide for Therapy
A new brochure on treating CRPS from an occupational therapist.

Hospital Protocols for the CRPS patient: Handle With Care!
A guide for patients and hospital staff to manage people with CRPS during their stay in the hospital.

El Síndrome de Dolor Regional Complejo (también llamado Distrofia Simpática Refleja)

Financial Resources

In Pain, Out of Work and Can't Pay the Bills
This resource directory for People With CRPS covers government assistance programs; free medicines for those who can't afford them; clinical trials, food stamps, and other ideas for those who suffer financially from the effects of CRPS.

To order your free copy of the In Pain, Out of Work, and Can't Pay the Bills or any of our brochures, please call the RSDSA office at 877.662.7737 or send your name, mailing address, and brochure requested to RSDSA, 99 Cherry St., Milford, CT 06460.

Patient Advocate Foundation's Co-Pay Relief Program: Pain Fund

Navigating Medicare and Medicaid: A Resource Guide for People with Disabilities, Their Families, and Their Advocates

Scholarship Resources for Students with Chronic Illness

Discharging Student Loans Due to Disability

Books

Living With RSDS, by Peter Moskovitz, MD and Linda Lang. To read a review, click here. To order a copy, click here.

Medifocus Guide to Reflex Sympathetic Dystrophy
A resource guide for the person with CRPS. Each guide has current and relevant CRPS research organized into categories for easy reading. Free updates are provided for 1 year.

Medifocus Digest Alerts for RSD

Exit Wounds: A Survival Guide to Pain Management for Returning Veterans and Their Families
Derek McGinnis, U.S. Navy Veteran, Iraq War, with Stephen R. Braun
From the American Pain Foundation

Articles and Resources

Partners Against Pain® is a resource that serves patients, caregivers, and healthcare professionals by advancing standards of pain care through education and advocacy.

Legal

Finding a Lawyer

Finding a Lawyer for a Workers' Compensation Case

Finding a Lawyer for a Social Security Disability Case

How to Avoid Firing Your Lawyer

Medicare Part D Appeals: An advocate's manual to navigating the Medicare private drug plan appeals process (PDF)
From the Medicare Rights Center

Finding a Physician and Medical Treatment

Consumer Guide to Pain Medications and Treatments
From the American Chronic Pain Association

FAQ on Opioids: Facts about Addiction, Pseudo-addiction, Physical Dependence, and Tolerance

An Aide for the Disabled, a Companion, and Nice and Furry
By Walecia Konrad, The New York Times
No longer just guides to the blind, service dogs are now helping people with many disabilities, but a well-trained dog can be a heavy cost.

Take Care Recovery Plan

Wound Care Resources

Sleep Issues
From How To Cope With Pain

Finding a CRPS Specialist
By Alfie C. Burns, President, RSDSA-CA

Finding a CRPS Specialist: Helpful Websites

Searching for a pain specialist or pain clinic in your area?
The Dannemiller Foundation has compiled for your use a list of hundreds of pain specialists and pain clinics from all over the globe.

Sacral neuromodulation for chronic pain conditions
Source: Anesthesiol Clin N Am. 2003;21:785-795.

Talking with Subhash Jain, MD, about Pelvic Pain: Pain Medicine with Compassion
From the Summer 2006 Issue of The Pain Practitioner

CRPS Diagnosis: A review of diagnostic tools

MR Neurography as a Useful Test in Evaluating People With CRPS
BY Robert L. Knobler, MD, PHD

Footwear Survey

Social Security, Workers Compensation, and Insurance

One strategy while applying for Social Security Disability benefits might be to request an evaluation by your state’s Department of Vocational Rehabilitation which might provide written documentation that you are unable to work outside the home and no home-based employment is available in your locale. If your case is closed, a letter (like the one here) can be included with an appeal.

Model Strategies for Recruitment and Hiring of People with Disabilities
In further support of the President’s Executive Order, the Office of Personnel Management (OPM) has developed recruitment and hiring models for agencies to use in increasing their employment of persons with disabilities.  The strategies, which focus on the use of Schedule A hiring authorities for persons with disabilities as well as reasonable accommodation practices and procedures, are to be used by Federal agencies in building agency-specific recruitment and hiring plans.  The hiring plans are a part of the Executive Order and are due to be submitted to OPM and to the Office of Management and Budget (OMB) no later than 120 days from the date of the OPM memo, November 8, 2010. 

The National Association of Injured and Disabled Workers (NAIDW) is a nonprofit charitable foundation where injured and disabled workers and their families find the resources, support, and guidance they need to reclaim their lives. NAIDW’s purpose is to provide short-term financial assistance to injured & disabled workers and their families as a result of injury, disability or illness.

RSD In DE: "Yes Sir, That's My Baby"—70 Year Old Specialist Is Touted And Ketamine Treatment Upheld

Related: Mailbag—Devin's Story (PDF)

The National Underinsured Resource Directory (from The Patient Advocate Foundation) is intended to help underinsured individuals and families locate valuable resources and seek alternative coverage options or methods for better reimbursement.

The Artists' Health Insurance Resource Center
Our mission is to make quality, affordable health insurance and health care available to every artist in the United States. AHIRC.org is an up-to-date, comprehensive and unbiased database of health care resources for artists, performers, freelancers and the self-employed.

The Comorbidity of Pain and Disability, and Tips for Pain Practitioners (PDF)
By Jeanne Lazo
The Pain Practitioner, Spring 2009

Disability Resource Exchange is a place to discuss disability issues

Disability.gov

Dear Jeanne: Social Security Medical Examination

New Ticket to Work Regulations Create Exciting New Opportunities

How Jersey Fails Injured Workers

The Basics of Health Insurance and Appeals

Coverage for all through education

Book Review: Persistence is Power
From RSDSA Review. Winter 2007.

Life Care Plans
By Steve Goren, Esq.

The Social Security Ruling on CRPS and what it means for you

How to Lose Your Case in 12 Easy Steps
By R. Steven Shisler, Esq.

Tactics for SS Disability
By Debra Sjolseth

What do do When You Lose Your Benefits Based on an "Independent Medical Examination"

Workers' Compensation 101: An Overview of WC for Employees With Work-related CRPS
By R. Steven Shisler, Esq.

Work After Disability
By Jeffrey A. Rabin, Esq.

Advocacy
For more on Advocacy, click here.

Your Pain, Your Rights: Dealing with Your Physician and Your Hospital

The Pain Care Bill of Rights

Support for People With CRPS

Awareness Posters
For more Awareness ideas, click here.

Our awareness poster can be downloaded and printed from your computer in two sizes: 8 1/2" x 11" or 11" x 17". For your convenience we have formatted it in black and white and color, for those of you who have color printers. The posters are in a pdf format.

Updated April 25, 2011

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