Potsdam Fibromyalgia Support group

Newsletter

May, 2003

Fibromyalgia Awareness Day May 10th

The Canton-Potsdam Hospital and Clarkson University, co-sponsors of the Potsdam Fibromyalgia Support Group will offer an afternoon of workshops in celebration of Fibromyalgia Awareness Day. The workshops will take place from 1-4 pm on Saturday, May 10th, at Clarkson Hall, 59 Main St. Potsdam. There is ample parking in the patient and staff parking areas. The program will include a variety of presentations about managing and living with FMS The schedule will be:

 

1:00 Alice McClure, BA, MS, CH:

Hypnosis for managing chronic pain

1:30 Angela Rufa, DC:

Chiropractic and FMS

2:00  Danielle Wheat, PT:

The role of exercise in managing FMS

2:30  Linda Dashnaw:

Living as a working mother with FMS

3:00  Cindy Durant, LMP:

Massage for FMS and myofascial pain

3:30  Leslie Russek, PhD, PT, OCS:

Overview of recent FMS research

 

There will be educational material, books about fibromyalgia and refreshments. Each session will go approximately 20 minutes, allowing 10 minutes between sessions to get up and move around, ask questions, look through the educational material, or talk with others. Participants may come for any or all of the workshop sessions. Family and friends are encouraged to join us for this opportunity to learn more about FMS and ways of managing it.

History of Awareness Day

Here is some history on Awareness Day from the National Fibromyalgia Association web site at www.fmaware.org/. You can get much more information from their web site.

      “For more than a decade, May 12th has been designated as International Awareness Day for Fibromyalgia and other Chronic Immunological and Neurological Diseases (CIND).  These diseases also include Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Gulf War Syndrome, and Multiple Chemical Sensitivity Syndrome.  They have been combined under the umbrella of CIND based on existing research and commonality of symptoms.

      “Tom Hennessy, president of R.E.S.C.I.N.D., gave birth to the idea of Awareness Day in 1992.  The May 12th date was chosen to honor the birthday of Florence Nightingale, the English army nurse who was a pioneer of the Red Cross Movement. Nightingale was virtually bedridden with a disease resembling the CIND illnesses, yet went on to inspiring accomplishments, including the founding of the first School of Nursing.

      “Now Awareness Day activities take place worldwide in an effort to increase awareness of Fibromyalgia and other CIND illnesses, helping patients and organizations to educate the general public, healthcare professionals, government officials, and legislative bodies.  Since the first International Awareness Day in 1993, each year the numbers of Awareness Day activities and the people involved increase.”

 

Help PT Students Learn About FMS

Each year, the Clarkson Physical Therapy graduate students learn about fibromyalgia so that they can become more effective health care providers in the future. As part of their learning experience, we have had several people with FMS come in to help with the clinical practice part of the experience. I am therefore looking for 4-6 people with FMS to come in Tuesday, May 5th, from 3-5 pm. It would involve 60-90 minutes of talking to the students one-on-one (or talking to two students) and about 30-60 minutes of allowing them to do some tests and measurements, such as a physical therapist would do with you on an initial visit. Examples include looking for tender points and checking joint motion. You would not be asked to do anything you are not comfortable doing. If you are available and willing to help, please contact Leslie at 268-3761. Past participants have said they have enjoyed the experience. It is a chance to make the next generation of health care providers more aware of and sensitive to FMS.

 

 

May 13th Massena Meeting

This will be an open discussion. Come to ask questions of others in the Support Group, or share your experiences. The meeting is at 6:30 pm in Massena Memorial Hospital.

 

May 22nd Potsdam Meeting

This will be an open discussion of living with FMS. Note that the meeting is at 6 pm in Clarkson Hall at 59 Main St, Potsdam.

 

Summer Fibromyalgia Picnic

The Potsdam Fibromyalgia Support Group will have its annual summer picnic this July 24th at 6 pm at Clarkson Hall. The picnic has always been a great time to hang out and talk about all sorts of things other than fibromyalgia. Potsdam and Massena members are all invited. Put it on your schedule!

Why there is no Fibromyalgia/ Chronic Fatigue Syndrome Day

The following was taken from the website: http://www.notjustbeans.com/cfshumor.htm

Author Unknown

·         Nobody could remember when it was.

·         Nobody could remember the color of the ribbons.

·         We couldn't find a ribbon color that wasn't already used that coordinated with all colors of sweats.

·         The ribbon's pin pushed on a trigger point.

·         Patients with Fibromyalgia couldn't fold the ribbon into the proper shape.

·         How could there be an awareness day for something that doesn't exist?

·         Patients with Fibromyalgia are too depressed to get out of bed and attend a rally.

·         Social Security would use the ability to rally as proof of our ability to work.

·         Everyone kept getting paper cuts trying to fold all the flyers.

·         The bags carrying our meds were too heavy to carry.

·         No one wanted to leave home overnight because they couldn't pack their beds.

·         Someone had to hold the planning meeting, and nobody's house was clean enough.

·         Someone set up a massage booth, and it got so crowded it collapsed. Since everyone was in the booth at that time, no one was left to rally.

·         Everyone wanted the same bumper stickers *See, I Told You I Was Sick!* and the printers ran out!

·         There weren't enough porta-potties in the state for the folks with Irritable Bowel Syndrome!

·         Some doctor said it’s all in your head but they never found the body.

·         The booth offering *Chocolate Diet Pills* ran out in ten minutes.

·         The people using TENS units shorted out the Pacific power grid.

·         10 percent of the crowd went into flare at the same time, and the resulting glow melted the ice caps at both poles!

·          

If you would like to be removed from the FMSG mailing list, please contact us at the above email or by phone at 261-5460.   

 

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