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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.

The Coalition Against Pediatric Pain: TCAPP was founded by families of children who are effected by chronic neuropathic pain disease. All of the founding families children suffer from RSD/CRPS (Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndrome) and many suffer from multiple pain conditions, such as EDS (Hypermobility Syndrome), muscle spasms, migraines, abdominal migraines, and painful GI issues.

Power of Pain Foundation: Patient Awareness

TSA Launches Toll Free Helpline for Travelers With Disabilities, Medical Needs

Suicide Survivor Support Resources

Resources for Veterans with CRPS

www.TOSSociety.org
contact Cyndy La Puma
a non-profit charity for RSI & TOS patients in chronic pain.

http://www.facebook.com/RSDSandPOTSSupportGroup
RSDS and Postural Orthostatic Tachycardia Syndrome Support Group
Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture.

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 Awareness UK 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.

Online Health Degrees If you're interested in medicine, health, and wellness, you might want to consider earning a degree, especially now, as the healthcare industry continues to grow.

Author: Franklin Michaels, Jr.
Title: NeuroTalk's RSD and CRPS Forum: An Online Community with Valuable Resources
Source: RSDSA Review: 2012 Vol. 25, Issue 4
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.

www.rsdsupport.org is a new blog and forum for patients, caregivers and loved ones to have a place to express feelings and frustrations and to give and receive support.

Other Social Networking Resources
HereToHelp ~The RSD Mommy~(FaceBook).

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.

Could this be CRPS/RSD
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

Affordable Colleges For Students With Disabilities A complete guide to college financing for students with disabilities. Find expert advice on loans, grants and scholarships specifically for disabled students, as well as resources to help with the job search after graduation.

CRPS Partners in Pain
A non-profit under the direction of Nancy Renee Cotterman

Chronic Illness Relief Fund

In Pain and Agonizing Over 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 and Agonzing Over 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.

Assurance Wireless
Find out if you qualify to receive a free Virgin Mobil Phone and 250 monthly minutes from Assurance Wireless.

Safelink
The Lifeline Phone program provides free wireless phones and service to income-eligible consumers, in certain US States.

Online College Database - Directory of U.S. College
A complete guide to distance learning for students with disabilities. Learn how to work with disability services, employ assistive technology, evaluate online programs, and succeed in the virtual classroom.

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

Q Link Wireless is recognized as one of the nation's leading providers of the Lifeline Assistance program. Our company's mission is to wirelessly connect people to their world, regardless of their income.

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

Higher Education Resource for People with Disabilities

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.

Pain-Related Fear, Perceived Harmfulness of Activities, and Functional Limitations in Complex Regional Pain Syndrome Type I. Numerous studies have shown that pain-related fear is one of the strongest predictors of pain disability in patients with chronic musculoskeletal pain and there is evidence that the reduction of pain-related fear through an exposure treatment can be associated with restoration of functional abilities in patients with complex regional pain syndrome type I (CRPS-I).

Legal

Finding a Lawyer

Finding a Lawyer for a Workers' Compensation Case

Finding a Lawyer for a Social Security Disability Case

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

Take Care Recovery Plan

Wound Care Resources

Sleep Issues
From How To Cope With Pain

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..

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

World's Softest® - Like Walking on a Cloud

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

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

The Basics of Health Insurance and Appeals

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

Support for People With CRPS
By Phyliss Shanken, MA

 

Updated April 2, 2014

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