Princeton and Beckley Fibromyalgia Support Groups Cancelled

Sadly, both the Princeton and Beckley VHFA sponsored support groups will no longer be held due to poor attendance at recent support group meetings. Hopefully, those who regularly participated over the last year and a half were helped in some way to more fully understand and better cope with fibromyalgia.

Special fibromyalgia workshops are planned for early in 2008. Notice will be given in the local media and through special mailings. Other activities and projects may also be offered if enough interest can be generated. It's really up to you all.

In the meantime, I encourage everyone to take advantage of our webblog where you can stay in touch with each other, ask questions and just have an outlet to communicate with others in southern West Virginia and southwest Virginia who share the daily challenges of living with fibromyalgia. It's easy to use...try it, you may like it.

October Support Group Held Only at PCH...Windhorse Rides Again

Next Princeton Area Support Group Meeting is Saturday, October 6 beginning at 1:00 p.m. at Princeton Community Hospital, Education Classrooms 1 & 2. The Beckley Area Support Group Meeting will not be held in October due to scheduling conflicts at Raleigh General Education Center.

Windhorse Healing Arts Center in Bluefield is sponsoring "Coping with Fibromyalgia and Chronic Pain" workshop featuring Complementary and Alternative Medicine (CAM) practitioners on Saturday, September 29 beginning at 9:30 a.m. and running most of the day. Participants will be able to actually experience one-on-one sessions with the practitioner(s) of your choosing. There is a fee to attend. I've included their event flyer with our regular mailing for October's meeting. Windhorse helped defer the cost of our October "Meeting Alert" mailing in exchange for this notice.

While VHFA does not endorse any of these alternative healing arts as effective, science-based therapies for fibromyalgia, a number of these may help with relaxation and could actually make you feel better due to the placebo effect or other unknown cause. If you do attend, I recommend listening to the respective practitioners and testimony from other attendees with some skepticism. Remember that the nation's leading fibromyalgia experts we have heard from over the last 18 months have reached basic consensus on the effective management of fibromyalgia and agree that complementary and alternative medicine plays a role in the management of fibromyalgia. However, CAM should be viewed as only a small portion of an effective fibromyalgia treatment plan. Most experts recommend that you choose alternative therapies like Cognitive Behavioral Therapy (CBT) and Bio-Feedback since these have been fairly well-studied and have shown some results in reducing pain and other FM symptoms. Regular participation in educational activities such as local support groups are considered a part of CBT. Other CAM therapies have not been shown to be effective or have not been supported by legitimate, peer-reviewed studies published in major medical or scientific journals.

Finally, a multi-discipline approach utilizing a combination of proper medications+daily exercise+good sleep hygiene+healthy diet+CAM therapies are what all the leading fibromyalgia medical experts agree upon as components of the best management plan for fibromyalgia symptoms. Currently, there is no cure for fibromyalgia. Beware of any practitioner who claims to have a cure.

Upcoming Support Groups Meetings Promise Big Changes

Little things make a big difference...

Princeton Area Support Group Meets Saturday, September 1st at 1pm at Princeton Community Hospital, Education Classrooms 1 & 2

Since this meeting falls on a National Holiday Weekend, we are going to try a first. Those who show up for the meeting this Saturday at PCH will have the opportunity to win their very own DVD copy of the first feature film ever produced about fibromyalgia, Living With Fibromyalgia... a Journey of Hope and Understanding. Whoever attends and brings a guest who has never attended any of our meetings or events before will be eligible to win the movie and their guest will also win the DVD, if selected in the drawing. Plus, if you bring more than one guest as defined above, you will receive a drawing entry for each newbie. You can have multiple opportunities to win. This is a great prize and hopefully will provide a little incentive to attend our support group. Additionally, we will have complimentary refreshments...another first!

Our featured presentation comes from the NFA Fame Conference with Dr. Harvey Moldolfsky. Dr. Moldofsky was formerly Professor of Psychiatry and Medicine and now is Professor Emeritus of the Faculty of Medicine and Member Emeritus, Institute of Medical Science, School of Graduate Studies at the University of Toronto. Currently, he is President and Medical Director of the Sleep Disorders Clinic of the Center for Sleep and Chronobiology in Toronto. He is considered by many medical professionals as the modern "father of sleep medicine". We cannot stress enough the importance of sleep in the management of fibromyalgia. Come learn with us how to improve our sleep and reduce our pain.

Who wouldn't want to spend an hour or two learning more about ways to better manage their pain and live a happier life while earning a great prize just by showing up with a new guest(s) and sampling yummy free treats for everyone? And, I didn't even mention having the privilege of meeting and sharing with others (really nice folks) who can appreciate what you're going through every day living with fibromyalgia. See you there!

Beckley Area Support Group Meets Saturday, September 8 at 1pm at Raleigh General Hospital, Education Center (New facility just opened behind former Education Center building)

The Charleston Area Medical Center & WVU School of Medicine Fibromyalgia Seminar will be shown via DVD. It features presentations and a Q & A session where Drs. Pfister and Linton lecture and then interact with the participants. Many who have viewed the seminar have found it to be very helpful in providing straightforward answers to their questions about fibromyalgia and how to effectively manage the syndrome. Very popular...Don't miss it!

NEWS FLASH! ...click here to review

June 21, 2007... FDA Approves First Drug for Treating Fibromyalgia
The U.S. Food and Drug Administration today approved Lyrica (pregabalin), the first drug to treat fibromyalgia...Lyrica reduces pain and improves daily functions for some patients with fibromyalgia. ______________________________________

This could be great news for some fibromyalgia patients. A handout will be provided at our upcoming support group meetings. Don't miss this chance to learn all about Lyrica and how it may help you live life with less pain!

______________________________________

Support Group Meetings for August

The next fibromyalgia support group meetings will be held:

1. Saturday, August 4th at Princeton Community Hospital, Education Classrooms 1 & 2 beginning at 1:00pm

2. Saturday, August 11th at Raleigh General Hospital, Education Center beginning at 1:00pm

Remember that the Princeton area group meets the first Saturday each month and the Beckley area group meets the second Saturday each month (except October 2007 which is the 3rd Saturday) throughout 2007.

Everyone is welcome...especially fibromyalgia patients, their families & friends, and health practitioners who want to learn more about the latest science-based, peer-reviewed research and treatments. Come share your unique experience about living with fibromyalgia with others and as a group learn how to better cope with this challenging chronic illness.

JULY SUPPORT GROUPS CANCELLED

Due to the upcoming holiday and the fact that I'll be away from the area until mid-July, I've decided to cancel the July support group meetings. I suspect many of our regular attendees will also be either away or very busy before, during and after the Independence Day holiday. Our attendence at the June meetings were way off our average and I think taking time to assess why that has happened will be valuable. I would appreciate your comments about how the support group meetings can become more useful and more appealing. Just drop me an email or leave a response here at the blog site.

Our regular support group meetings will resume August 4th at Princeton Community Hospital and August 11th at Raleigh General Hospital, both in the respective education classrooms beginning at 1pm.

Until then, have a safe and enjoyable 4th.

Best regards,

FibroJoe

Support Group Meetings in June

Fibromyalgia: The Invisible Illness of 10 Million Americans

Our next support group meetings will be held as follows:

• Princeton, WV...Saturday, June 2nd at 1pm at Princeton Community Hospital, Education Classrooms 1 & 2 ___________________________
• Beckley, WV... Saturday, June 9th at 1pm at Raleigh General Hospital, Education Department (inquire at volunteer desk)

Everyone is welcome at either location. There is no cost.

Next Support Group Meeting To Be Held At Tamarack, Beckley, WV

The regional Fibromyalgia Support Group Meeting usually held at Princeton Community Hospital is traveling to Beckley, WV at Tamarack: The Best of West Virginia on Saturday, May 5th at 7:00 p.m. in the Gov. Hulett C. Smith Theater.

This meeting will present the Greater Beckley premiere of the first feature-length documentary about the lives of fibromyalgia patients. It's called "Living with Fibromyalgia: A Journey of Hope and Understanding" made by Trillusion Media. An informal Q&A session and discussion about fibromyalgia will follow immediately after the film. Everyone is encouraged to invite as many fibromyalgia patients, their families and friends, physicians and anyone else who may have an interest in learning more about fibromyalgia syndrome and what life with fibromyalgia is really like.

This meeting will serve to inform those living in the greater Beckley area that a local fibromyalgia support group has been established to serve their area in addition to the Princeton location. We're asking all of our regular participants to "get the word out" by inviting 5 others to the showing. There is no cost to attend. Everyone is welcome. Valuable door prizes will be awarded at the meeting, chosen from the registrants attending.

This is a ground-breaking documentary...the first to explore the most intimate feelings and life-altering experiences of people living with fibromyalgia. It also offers some professional insights into the syndrome and how patients can manage this often debilitating chronic illness. The documentary screening is part of the "Fibromyalgia in Focus 2007" campaign launched by the National Fibromyalgia Association for National Fibromyalgia Awareness Day on May 12th.

Click on the NFA link (above left) to learn more about the film, the campaign, additional resources and National Fibromyagia Awareness Day marked on May 12th each year.

SUPPORT GROUP MEETING Scheduled for SATURDAY, APRIL 7 at 1pm

The next regional Fibromyalgia Support Group meeting is scheduled for Saturday, April 7th at 1pm at Princeton Community Hospital, 12th Street, Princeton, WV...Education Classrooms 1 & 2 as usual. This meeting will present the regional premiere of the first feature-length documentary about the lives of fibromyalgia patients. It's called "Living with Fibromyalgia: A Journey of Hope and Understanding" made by Trillusion Media. This showing will also include a special extended interview with Lynne Matellana, Founder & President of the National Fibromyalgia Association. An informal Q&A session and discussion about fibromyalgia will follow immediately after the film. Everyone is encouraged to invite as many fibromyalgia patients, their families and friends, physicians and anyone else who may have an interest in learning more about fibromyalgia syndrome and what life with fibromyalgia is really like. There is no cost to attend. Everyone is welcome.

SUPPORT GROUP MEETING Scheduled for SATURDAY, MARCH 3rd at 1pm

The next regional Fibromyalgia Support Group meeting is scheduled for Saturday, March 3rd at 1pm at Princeton Community Hospital, 12th Street, Princeton, WV...Education Classrooms 1 & 2 as usual.
It will feature a look back at all the subject matter we've covered since last June 2006. I've put together a sort of "highlights reel" on DVD. There are many new participants who have not seen and heard much of the audio visual presentations that have been offered at our meetings. For those of you who have been at most of our sessions, it will be a good time to review. To recap some of the content that will be featured at this meeting, here's a list:

• We began with Dr. M. Yunus who is considered the "Father of modern fibromyalgia research" and his presentation entitled New Hope for Fibromyalgia a fibromyalgia seminar at CalState, Fullerton, Sept. 2004.
• Next, we viewed Dr. Patrick Wood's presentation (LSU) about the dopamine theory of fibromyalgia and treatment protocol entitled Fibromyalgia: Show Me Where It Hurts produced in late 2005.
• Then, we sat in on the Fibromyalgia 101 seminar held in Charleston, WV in early 2006 with Drs. Phister and Linton of WVU School of Medicine and the Robert C. Byrd Health Sciences Center. This was part of the CAMC Mini-Medical School for the Public series.
• Later, we reviewed the National Institute of Health's flash presentation, Fibromyalgia Syndrome Overview.
• Then, after a couple postponements, came the opportunity to view an important roundtable discussion of noted physicians and fibromyalgia clinicians from around the country including Dr. Daniel Clauw of the University of Michigan who is perhaps the leading FM researcher of 2006. This was part of a health information series for physicians produced by UCTV held at the University of California at San Diego last June. It also featured a demonstration of how a doctor examines a patient for fibromyalgia and showed slides of fMRI scans showing that fibromyalgia produces physical changes in the brain...a very important development for the diagnosis of fibromyalgia syndrome.
• Finally, we learned the importance of exercise for fibromyalgia patients and witnessed a demonstration of appropriate exercises developed by Dr. Jessie Jones of University of California, part of the NFA Strategies for Life series and a preview of their new Pain Management Center Program.
• As if that weren't enough, I've thrown in radio interview segments from Patient Power with Andrew Shorr with Dr. Andrew Holman, a noted fibromyalgia researcher and clinician at the University of Washington and highlights from seminars held at Arizona State University and University of Texas featuring Drs. Bell and Russell, respectively. Dr. I. Jon Russell is a noted fibromyalgia researcher and rheumatologist.

WOW!!! Is that enough information or what?? Luckily, the materials reviewed on the DVD for the upcoming meeting are highly condensed so you won't feel overwhelmed. A Q&A session will follow as well as some time to get to know one another and exchange fibro war stories. Don't miss this meeting! It is an opportunity to catch-up on the latest fibromyalgia research and treatments. By the way, the full-length versions of all these audio/video presentations will soon be available at local public libraries throughout our region.

All regional Fibromyalgia Support Group meetings at PCH will continue to be the FIRST SATURDAY each month at 1pm throughout 2007.

Please note that the theme for this year's Fibromyalgia Awareness Day event has been announced by the NFA: It is (drum roll, please)..."FOCUS ON FIBROMYALGIA" and the event will cover the day before National Fibromyalgia Awareness Day on Saturday, May 12th and the day after...a 3-day event for 2007.

VHFA will be holding regional showings of the documentary "Living with Fibromyalgia: A Journey of Hope and Understanding" throughout March, April and May. We need volunteers to assist with all facets of this awareness project. If you can help, send me an email: vhfa@suddenlink.net

Support Group Meets Saturday, February 3rd at 1pm

The regular monthly meeting of the regional Fibromyalgia Support Group will be held Saturday, February 3rd beginning at 1:00 p.m. at Princeton Community Hospital Education Classrooms 1 & 2. The meeting topic will be"Strategies For Life with Fibromyalgia: The Importance of Exercise". The program will feature a demonstration of the fitness program developed by California State University for fibromyalgia patients and endorsed by the National Fibromyalgia Association.

Let me take this opportunity to thank once again our guest speakers from our last meeting on January 6th. Dr. Bailes and Tom Beasley certainly had the group on their feet and experiencing first hand the healing properties of magnetic field therapy. Also, Dr. Maxwell's presentation on chiropractic and how it may provide relief from chronic pain as part of a comprehensive fibromyalgia syndrome management plan was well received. Check out the photos.

Don't miss our next meetng on Saturday, February 3rd. It's another "hands on" type of session of which I know everyone can benefit.