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, July 7th, 6:30-7:30 pm. meeting:
Why is Breathing so Difficult?"

The topic of the July VIRTUAL support group meeting will be “Why is Breathing so Difficult?” Current research and thousands of years of cultural history agree that breathing ‘correctly’ is essential for our health. Why do so many of us breathe poorly, and how does it affect our health? How can we do it better? This session will include a presentation on breathing and several guided breathing activities.

The Zoom access information is the same as for past meetings. An invitation with log-in information will be sent to people on the email list. If you do not get email announcements and would like to, contact Leslie (Lrussek@clarkson.edu). The Zoom-room will be open 15 minutes early for people to come chat or test their systems. Please try to join the meeting a few minutes early so we can start as a group. If you are not familiar with Zoom and would like help setting it up on your computer, contact me. Everyone is welcome to attend our support group meetings.

"Hypermobility 101" lectures have resumed virtually on Zoom. They are every 2 weeks on odd numbered Wednesdays, noon-1 pm. Each will be a 30-45 minute lecture followed by QA. Please realize that I cannot offer personal medical advice. Email me (Lrussek@clarkson.edu) to get the Zoom access information for these lectures.

  • 6/17: Hypermobility 105: EDS in Children (revised topic)
  • 7/1: Hypermobility 105: GI/gut problems caused by hEDS, POTS, and MCAS.

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. This 150-page guide is 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
  • Support Group meeting times:
    Summer & Winter hours: the 1st Tuesday of every month (except for holiday weeks). 6:30-7:30 pm April-Sept, Noon-1 pm Oct-March.
    Location: Clarkson Hall at 59 Main St., Potsdam, NY. Follow the signs to the meeting room.
    For information about the Potsdam F-EDS Support Group, contact the Canton-Potsdam Hospital Physical Therapy Dept. at (315) 261-5460.

    Contact the Potsdam Group Leader at lrussek@clarkson.edu.

    Clarkson University 
    Canton-Potsdam Hospital 
    Clarkson Physical Therapy Department

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