CRPS / RSD AWARNESS
Chronic Regional Pain Syndrom | Reflex Sympathetic Dystrophy
If you or a loved one are experiencing unexplained moderate-to-severe pain and are trying to find the cause. You may have already visited one or more physicians. A physician may have suggested that your symptoms could possibly be CRPS or RSD.
If you are on a journey for a concrete diagnosis, check out Resources & Links.
If you are on a journey for a concrete diagnosis, check out Resources & Links.
First of all, there are a number of conditions that have serious, chronic pain as a symptom, along with others that are also present in CRPS/RSD. I am reposting information to help spread the word about the importance of early diagnosis for best outcomes and to assist patients and providers to learn more about this condition and its symptoms to help rule it in — or rule it out as a diagnosis.
I am informed there is an early treatment 'Golden Window'', roughly 1-4 months from initial injury date, for aggressive treatment to help arrest it's progress, and the longer it takes to confirm a diagnosis, precious time has been wasted at the onset. Tools exist to assist in early assessment of the Autonomic Nervous System and Sudomotor function all related to symptom activity. some more detailed than others
I have a dear friend recently diagnosed and being treated aggressively.
As her onsite caregiver with biosensor/medical tech sales background related to the autonomic nervous system and diagnosing ANS/sudopath function, this has been both enlightening and mystifying. I can't imagine a more frightening diagnosis. Her story link is HERE >
What is CRPS/RSD?
CRPS/RSD is a chronic neuro-inflammatory disorder. CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale.
CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization. The persistent pain and disability associated with CRPS/RSD require coordinated, interdisciplinary, patient-centered care to achieve pain reduction/cessation and better function.
It has been shown that early diagnosis is generally the key to better outcomes. However diagnosing CRPS/RSD is not a simple matter and many patients search for months or years for a definitive diagnosis.
It is important to know that research has proven that CRPS/RSD is a physical disorder. Unfortunately, it has not been unusual for medical professionals to suggest that people with CRPS/RSD exaggerate their pain for psychological reasons. Trust your body and continue to seek a diagnosis.
If it’s CRPS/RSD, the pain is not in your mind!
Making the Diagnosis
How CRPS is Diagnosed
Author: Katie L. Aker
Title: CRPS Diagnosis: A review of diagnostic tools
Dr. R. Norman Harden is a Professor of Physical Medicine and Rehabilitation at Northwestern University. Drs Harden and Bruehl were instrumental in validating the CRPS diagnostic criteria.
There is no single diagnostic tool for CRPS/RSD. Physicians diagnose it based on patient history, clinical examination, and laboratory results. Physicians must rule out any other condition that would otherwise account for the degree of pain and dysfunction before considering CRPS/RSD. Early diagnosis and appropriate treatment offer the highest probability of effective treatment and possible remission of CRPS/RSD.
RSD vs CRPS
Although most medical experts believe RSD is characterized by an overactive sympathetic nervous system response, there is much debate about the physiology of the disease. The name reflex sympathetic dystrophy was given to the disease in the 1940’s but has undergone recent scrutiny. Many in the medical field believe that the name “reflex sympathetic dystrophy” is somewhat misleading considering only a portion of the patients respond to sympathetic blocks, indicating that not all of the pain in this syndrome is related to the sympathetic nervous system. In response to this frequent inconsistency, the International Association for the Study of Pain has adopted the term Complex Regional Pain Syndrome (CRPS) to describe the debilitating pain syndrome that was commonly known as RSD.
4 Stages of the Disease
STAGES OF CRPS/RSD
CRPS/RSD has been divided into different stages. Depending on nature of injury, the stages vary in their duration. I have seen it listed as both 3 & 4 "Stages". I chose the later as it seemed more well defined based on the patient that has prompted this research. - V.
STAGE I - Acute Stage
STAGE II - Dystrophic Stage
STAGE III - Atrophic Stage
STAGE IV -
For Kids, Teens and College Students Living with CRPS/RSD
CRPS/RSD can be especially scary for young people. Not only are you feeling a lot of pain, you have special problems that adults do not.
Please send them an email and let them know what you would like to see on their page and how they can help you feel like any other kid.
Please visit the Children’s Hospital of Orange County to listen to lectures on:
Ehlers-Danlos Syndrome – The Geneticist’s Perspective
by Neda Zadeh, MD and
Chronice Pain in Children by Pradeep Chopra, MD.
Signs & Symptoms Spectrum
CRPS/RSD Signs and Symptoms Checklist
There is no gold standard for diagnosing CRPS/RSD. If the pain is getting worse, not better, and if the pain is more severe than one would expect from the original injury, it might be CRPS/RSD.
Look for these telltale signs and symptoms:
Please keep in mind that this information is not intended as medical advice, nor is it a substitute for a diagnosis by a qualified, medical professional. Please feel free to share the information with your doctor or doctors. You may also feel free to contact rsds.org with any questions you might have about CRPS/RSD and how to find qualified medical assistance.
Download Othe Telltale Signs of CRPS PDF Here
Joshua Prager, M.D. is asked to discuss a difficult case of CRPS on the doctors television show and recommends comprehensive inter-disciplinary functional rehabilitation.
Treatment for CRPS must be individualized.
No one treatment will work for everyone. Most treatments and medications were developed to treat other chronic pain syndromes and may not be covered by your insurance Treatment for CRPS may be difficult. The goal is to seek pain relief and to restore function.
Treatment methods are continuously evolving as research and clinical practice provides new evidence and insights.
For example it was once thought that sympathetic nerve blocks were a diagnostic tool and a curative procedure. This has been disproven over time.
Some current treatment methods that may work for you are:
Use of anti-convulsants, use of TCA antidepressants, physical and occupational therapy (including graded motor imagery and mirror box therapy), the anesthetic Ketamine, steroids in the acute phase, nerve blocks, spinal cord stimulator, warm water therapy, calmare therapy, hyperbaric oxygen therapy, use of opiates (may be considered controversial), bisphosphonates (study starting in 2015).
There are some emerging treatments that are receiving increased attention including:
Kinesio Taping and low-dose naltrexone. RSDSA is funding a pilot study of this medication at Stanford University.
For a library of articles with detailed information about these and other treatments, including guidelines for dental procedures in CRPS/RSD patients, visit the RSDS.org Resources page.
To keep up with the latest and most effective treatments, subscribe to their RSDSA Community Update newsletter, blog and their email alerts.
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) mission is to provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure.
RSDSA raises funds for research to find better treatments – and a cure – for CRPS/RSD. We also work with research groups and healthcare professionals worldwide to foster collaboration, communication and awareness. Here you’ll find the latest studies and articles about progress and breakthroughs.
Find a Support Group
CRPS/RSD can be isolating. RSDSA ensures that those affected by CRPS/RSD are not alone. We’ve built a strong, vibrant community that participates in conferences, fundraising events, mentoring, support groups and other activities that help them take control of life with CRPS/RSD.
Contribute Your Used and Useable Medical Equipment
The RSDSA community is all about helping one another.
In that spirit, RSDSA has launched the RSDSA Medical Equipment Exchange. If you have medical equipment that you are no longer using and that is in good, usable condition – from crutches to hospital beds to motorized wheelchairs, etc. — please contact us about donating it to the Exchange. They will match your donated equipment with a CRPS/RSD patient who can make good use of it and help arrange to get it to them. We thank you in advance for participating in this new and important program.