Oahu CRPS Support Group

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Oahu CRPS Support Group

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Support Group

Oahu CRPS Support Group  offers in person, online, email, and phone support for people living with CRPS. From time to time our meetings are open to family members and loved ones. We are committed to learning from one another while respecting each other's privacy and individual treatment choices. We believe that telling our stories and hearing about other people's journeys helps us adjust to and develop coping skills for living with CRPS.  


Our Facebook page gives members a place to communicate about meetings, chat about things that matter to us, and for new members to join. 


You can reach us through our Facebook page or our Contact form for more information about meeting dates and times. Please include accurate contact information so we can get back to you promptly.  

What is CRPS?

Complex Regional Pain Syndrome, previously known as Reflex Sympathetic Dystrophy, is a severe neuro-inflammatory pain disorder,  usually after a trauma such as a broken bone, musculoskeletal injury, nerve damage, or surgery. Immobilization may be a risk factor for CRPS. Usually beginning in one extremity, symptoms do not follow nerve distribution patterns, but are regional. Many CRPS patients experience insomnia, fatigue, and depression. 


 CRPS is divided into Type 1 with no  demonstrable nerve injury and Type 2 with  nerve injury. Treatment is the same for both. Research conducted by Anne Oaklander, MD, PhD has shown that small fiber pathology exists even in Type 1.  A concept which has fallen out of favor is the  Stages of CRPS.  Symptoms may wax and wane. Acute and chronic CRPS symptoms may vary in presentation.


Many people diagnosed with CRPS recover within the first year. However some people experience chronic, unrelenting severe pain and disability.  Over time, symptoms can spread beyond the initially affected area. Long standing CPRS may result in systemic complications.


Symptoms include:

  •  Ongoing severe pain which can be described as burning, squeezing,  prickly pins and needles, or throbbing
  • Swelling which can be excessive
  • Color and temperature changes such as heat with redness and/or blue with coldness or blotchy, purple or pale skin
  • Allodynia - heightened sensitivity to stimulation that doesn't normally cause pain
  • Hyperalgesia - painful stimulation causes more pain than usual
  • Abnormal sweating
  • Skin, hair and nail changes
  • Stiffness and limited range of motion
  • Muscle spasm, tremor, or dystonia (muscle contractions causing fixed abnormal position of limb)
  • Muscle Atrophy


Damage to or malfunction of the peripheral and central nervous system is believed to be at the root of the condition. Changes in blood flow and high levels of immune system inflammatory agents contribute to the symptoms. 


It is important to begin treatment as soon as possible, while only the peripheral nervous system is affected and before there are changes to the central nervous system (brain and spinal cord).


CRPS is diagnosed based on clinical signs observed by the physician, and symptoms reported by the patient using the IASP Budapest Guidelines. Other conditions with similar symptoms must be ruled out.


 It's important to make sure your physician is qualified to diagnose and/or treat CRPS. It's estimated that the average patient see more than four doctors before they receive a proper diagnosis. 


For information about treatment options, research, and more, please visit our "Where can I get more information" section. 



Where can I get more information?

Diagnosis and Treatment


  • Engaging with your Doctor
  • National Institute of Health CRPS Fact Sheet
  • CRPS: Diagnostic Checklist
  • RSDSA website: Treatment Guidelines
  • Medscape: CRPS Treatment and Management
  • RSDSA Patient Education Conference Pradeep Chopra: Diagnosis & Management of CRPS & Comorbid Conditions
  • Movement Disorders in CRPS
  • Physiotherapy management of CRPS
  • Functional Restoration and CRPS


Research

Clinical Trials 


Surgery with CRPS


  •  The  risk of pain syndrome affecting a previously non-painful limb following  trauma or surgery in patients with a history of complex regional pain  syndrome
  • Ketamine as Adjunctive Anesthesia in Refractory Complex Regional Pain Syndrome Patients: A Case Series 


Tips for Living With Pain


  • RSDSA: Living with Pain
  • The Intractable Pain Patient's Handbook
  • Dr. Kristen Slater, 9th annual Women in Pain Conference


Helpful Links


  • RSDSA
  • RSD Hope


this site is under construction... please check back for more!

Oahu CRPS Support Group

info@crpshawaii.org

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