The Potsdam Fibromyalgia Support Group is now the Fibromyalgia /Ehlers-Danlos Support Group: The F-EDS Support Group
Facilitator: Leslie Russek, PT, DPT, PhD, OCS
Associate Professor, Clarkson University Physical Therapy Department and
Physical Therapist, Canton-Potsdam Hospital
The F-EDS Support Group is on SUMMER HOURS: First Tuesday of the month, 6:30-7:30 pm. The next meeting will be Tuesday, July 2nd, 6:30-7:30 pm. The topic will be:
"Positive Thinking and Pleasurable Activities."
In our Supporters meeting in June, we discussed how important it is to keep pleasurable activities in our lives. Sometimes we may need to change how we do things (have raised flower beds instead of a full garden), or we can come up with new things to enjoy together (go to a concert or farmers' market). And sometimes our supporters might benefit from pursuing hobbies on their own, without guilt about leaving us on our own. We again encourage supporters to come to our meeting, but this is also a chance for people without supporters to connect. We will have light desserts to celebrate 4th of July and encourage informal conversation and networking. Everyone is welcome to attend our support group meetings. We meet on the 2nd floor of Clarkson Hall at 59 Main St., Potsdam.
Join the Potsdam Fibromyalgia Support Group on Facebook!
- We have a private Facebook group just for our support group members. The Facebook page will include old newsletters and documents currently posted here. This will provide a forum for people who were unable to attend a meeting to discuss the topic, and for discussions to continue past the meeting. Contact Kris at email@example.com to join. We hope this will become a place for our group members to share success stories, ask one another questions, and to make friends among other people in the North Country dealing with FM. Because the group is by invitation only, what you share will be kept within the group – no-one outside the group can see. Check it out!
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.
Links to useful resources
- 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:
- UC Davis pamphlet lets you pick areas to focus on: UC Davis Pain Self-Management Program
- American Chronic Pain Association has many patient resources: https://www.theacpa.org
- On-line pain self-management: https://www.liveplanbe.ca has questionnaires to customize information and suggestions for issues that you face
- Pain Toolkit: https://www.paintoolkit.org/tools has on-line videos and modules to give you a ‘toolkit’ to work with. The Australian accents add a fun twist.
Support Group meeting times:
Summer & Winter hours: the 1st Tuesday of every month (except for holiday weeks). 6:30-7:30 pm May-Sept, Noon-1 pm Oct-April.
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 firstname.lastname@example.org.
If you have comments or suggestions, email me at email@example.com