Potsdam Fibromyalgia Support Group Newsletter May, 2008 Documentary on Fibromyalgia To honor Fibromyalgia Awareness Day in May, the Potsdam Fibromyalgia Support Group will sponsor a free viewing of the full-length documentary “Living With Fibromyalgia.” We showed this documentary last year and many have requested we show it again. Friends and family are encouraged to attend. The film will be shown on Thursday, May 22nd at 6:30 pm in the 1st floor amphitheater of Clarkson Hall. Following is a summary of the movie, from the website, (http://www.livingwithfm.com): (picture, above, from http://fmaware.org)

An honest, hopeful and highly practical Fibromyalgia Awareness resource for fibromyalgia patients and Fibromyalgia Network sponsored a survey their families. asking its members about the most important changes in living with FMS as well as the When the mysterious pain and debilitating challenges that remain Results were reported in fatigue plaguing a loved one is diagnosed as their April, 2008 issue. Respondents reported: "fibromyalgia," the first reaction is usually The Greatest Improvement: relief at finally having a name for the pain 1. Doctors believe me followed by confusion as everyone scrambles 2. More effective medications available to get information. What does a diagnosis of 3. Family, friends, others believe me fibromyalgia mean? Is there hope that things 4. General public awareness will get better? 5. More research 6. More non-drug treatment options Filmmakers Daneen Akers and Stephen Eyer 7. More educational materials available asked these questions when Daneen's The Greatest Challenges/Roadblocks: mother was diagnosed with fibromyalgia 1. Doctors who do not believe me several years ago. After watching their family 2. Lack of general understanding & awareness search for answers, they decided to make a 3. Lack of research funding film about their own journey for 4. Lack of education for MDs treating FMS understanding and hope. They interviewed 5. Lack of a definative test for FMS doctors, experts, and most importantly, 6. Negative media coverage Daneen's mom and other fibromyalgia 7. People thinking it is a mental health problem patients from diverse backgrounds who share 8. Poor insurance coverage their own stories of learning to survive and 9. Need to develop new medications even thrive with this illness. Another article in this issue of Fibromyalgia The result of over two years of interviews and Network discussed how little training physicians get research, Living With Fibromyalgia is the film in managing FMS. Some MDs are overwhelmed by they wish their family could have watched the vagueness of the disease, the suffering it causes, together when they first heard the word "fibromyalgia." and the lack of a definitive treatment. So, even the doctors who believe you may struggle to help you. May Potsdam Meeting:  Slouched upper back and/or tight chest muscles The Potsdam Fibromyalgia Support Group March pulling shoulders forward meeting will be Thursday, May 22nd 6:30 pm in  Stress and tension Clarkson Hall at 59 Main St.. We are showing the full-  Whiplash injury length documentary “Living With Fibromyalgia.”  Carrying a heavy purse or backpack or wearing a Friends and family are encouraged to attend. For more heavy coat info, contact Canton-Potsdam Hospital Physical Therapy  Bra straps pulling on the shoulders Department at 261-5460 or send an email While treatments such as massage, heat or ice often help [email protected]. treat UT TrP, the best strategy is to figure out what is causing stress to the muscle and change your habits to June Massena Meeting: decrease this stress. Treatments, The Massena Fibromyalgia Support Group will meet such as massage or heat, then at Massena Memorial Hospital Tuesday, June 10th at have a better chance of providing 6:30 pm. The meeting will be an open discussion. For lasting relief. more information, contact facilitator Maxine Dodge, at 769-5778 or [email protected]. Note that Prevention the Massena group will not meet during July and o Correct your posture, so that August. All members are welcome to attend the shoulders are not rounded Potsdam meetings (get a few people together to car- (see cartoon) pool!) o Correct work space so arms are supported at proper Trigger Pointers: Upper Trapezius height Correcting your posture picture from: www.drbookspan.com/ The upper trapezius (UT) muscle is a large sheet of o Consciously relax muscles NeckPainArticle.html muscle that goes from the base of your skull and the when tense upper spine to the point of your o Do not carry heavy purse or backpack; carry shoulder. It is said to be the most backpack on both shoulders common trigger point (TrP) in all An UT stretch is shown in the picture to the right. people. It refers pain up the back of If it is difficult for you to grasp your arm behind your the neck over the side of the head back, you can also hold on to the base of your chair on and temple, resembling a tension the side you are stretching. The goal is to hold the headache. TrP in the UT cause neck shoulder blade down so that tipping the head in the and upper back pain, but generally opposite direction can produce no neck stiffness. However, if a a strong stretch. Hold the tight UT compresses the vertebrae stretch 15-20 seconds, repeat 3- in the spine, the TrP can cause neck 5 times per day. A good way to stiffness and aggravate joint pain or remind yourself to relax your nerve compression in the neck. UT muscles is to take a deep Factors that aggravate UT TrP: breath while you shrug your  Holding arms up, shoulders then exhale with a sigh e.g., typing without as you let your shoulders drop. forearm support Often you will find that your shoulders drop down lower than  Holding the they were when you started, telephone between showing that you had been your shoulder and storing tension in the muscles. ear Picture from: www.mypressureproducts.com  Repetitive work This newsletter is a joint effort of involving static Clarkson University and Canton-Potsdam Hospital. If you positions holding would prefer to receive these newsletters electronically, please arms up, such as send your email address to [email protected]. You can cooking, assembly access current and previous Potsdam Fibromyalgia Support Picture from: work, etc. Group Newsletters on our web site: www.drbookspan.com/NeckPainArticle.html www.people.clarkson.edu/~lnrussek/FMSG.