The Potsdam Fibromyalgia /Ehlers-Danlos Support Group: The F-EDS Support Group

Facilitator: Leslie Russek, PT, DPT, PhD, OCS
Professor, Clarkson University Physical Therapy Department and
Physical Therapist, Canton-Potsdam Hospital

Tuesday, December 7th, 5:30 pm EST:
"How to Enjoy the Holidays."

The next meeting of the F/EDS Support Group is Tuesday, December 7th. We will discuss strategies for making the best of the holidays. Holidays can often be difficult for people with chronic health conditions, but some planning can make it more enjoyable. For example, create a “Spoon Giving Tree”. Cut out some spoon shaped pieces of paper and write tasks that family (and/or friends) could do for you to save you spoons. People could then give you a ‘gift of spoons’ by doing that task for you. For example, you might ask your kids to clean the house before a family gathering (maybe 3 spoons?). Or your spouse could order take-out so you don’t have to cook (maybe 2 spoons). Maybe your partner and kids can entertain themselves so you can have an evening to indulge in a hot bubble bath (2 spoons?). Make it a fun way to save your spoons for the most important thing: quality time with your family and friends. Come with your favorite ideas for enjoying the holidays! If you would like Zoom access information for support group meetings, email me at Lrussek@clarkson.edu. Everyone is welcome to attend our support group meetings.
  • "Hypermobility 101" lectures continue virtually on Zoom. See my EDS/HSD web page for details.

    Join the Potsdam Fibromyalgia Support Group on Facebook!

    Useful links and resources: (links to on-line resources are given in teal)

    2016 American College of Rheumatology Diagnostic Criteria for Fibromyalgia. The 18 tender points are no longer used for diagnosis of FM. This self-administered questionnaire walks you through the diagnostic criteria.

    Employees with Fibromyalgia: This resource is from The Job Accommodation Network (JAN), supported by the US Dept of Labor, Office of Disability Employment Policy. This document has useful suggestions for making accommodations in the workplace.

    Employees with EDS: This resource is from The Job Accommodation Network (JAN), supported by the US Dept of Labor, Office of Disability Employment Policy. This document has useful suggestions for making accommodations in the workplace.

    Talking With Your Doctor: This brochure from the National Institute on Aging is intended for older adults because they tend to have more medical concerns and tend to take more medications – making it an excellent resource for people with FM or EDS.

    Links to useful resources

    • "Managing Chronic Pain" Self-help pamphlet with excellent self-care information, including worksheets and forms. From Intermountain Healthcare.
    • FibroGuide Self-management program and free on-line course with fibro expert Daniel Clauw.
    • CFIDS & Fibromyalgia Self-Help site resources related to fatigue in fibromyalgia and chronic fatigue. Has several on-line courses available for people with FM or their families.
    • If you have pain all the time, and you don't understand why, it can help to learn a little about the neurophysiology of chronic pain. This fun, 5-minute cartoon video can help: Everything You Need To Know About Pain in < 5 Minutes
    • There are several excellent web-based guides that can help you develop a pain self-management plan:
      1. UC Davis pamphlet lets you pick areas to focus on: UC Davis Pain Self-Management Program
      2. American Chronic Pain Association has many patient Resources, including a 200+ chronic pain management guide intended for both patients and providers: https://www.theacpa.org
      3. On-line pain self-management: https://www.liveplanbe.ca has questionnaires to customize information and suggestions for issues that you face
  • Trigger Point Resources: www.triggerpoints.netwww.myofascialtherapy.org/symptom-checker
  • Tips for supporting someone with fibromyalgia 
  • Dysautonomia International information on Postural Orthostatic Tachycardia Syndrome (POTS)
  • An excellent self-help guide for managing fatigue, from UK National Health Service: Managing Your Energy
  • Contact the Potsdam Group Leader at lrussek@clarkson.edu.

    Links:

    Clarkson University 
    Canton-Potsdam Hospital 
    Clarkson Physical Therapy Department

    If you have comments or suggestions, email me at lrussek@clarkson.edu