What Is Fibromyalgia?
Fibromyalgia is a widespread pain and fatigue disorder of unknown cause. Fibromyalgia describes pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.
Most patients with fibromyalgia say that they ache all over. Their muscles feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with fibromyalgia and it shows up in people of all ages.
Where to Begin to Looking for Help
There is a wealth of services in this country, but there are also particular challenges for people with fibromyalgia in accessing them. Many providers have limited knowledge of how to understand, evaluate, and serve the needs of people who have chronic illness. And for those who suffer from disorders like fibromyalgia, chronic fatigue syndrome, and multiple sclerosis, there is limited energy to pursue the research. Where do you begin? Who do you call? What do you ask for?
According to Patricia Fennell, MSW, CSW-R, and the author of The Chronic Illness Workbook: Strategies and Solutions for Taking Back Our Life, chronic illness not only affects your body, it affects your life, work, family and it affects a person spiritually and socially.
Stages of a Chronic Illness
To identify available services, it is important to recognize that disorders like fibromyalgia not only touch every aspect of your life, but they change over time. Understanding the stages you go through helps you identify the types of services you need according to Fennell who has devised the following model:
- Phase 1: Crisis – help in coping with urgency and trauma of a diagnosis
- Phase 2: Stabilization – help in initiating ways to restructure your life
- Phase 3: Resolution – help in coping with a sense of loss and with developing an authentic new self, a new philosophy of living, and a revised set of supports
- Phase 4: Integration – help in integrating illness as an important factor, but not the only one or even the primary one, in creating a meaningful life
Resources: Step One – Be in the Loop
Join organizations that have already pulled together vast amounts of information and maintain themselves as up-to-date resources. Web sites, newsletters, and internet news groups bring you news, the ideas of leading researchers, contact information on practitioners, data on support groups, links to related sites and the words and experiences of other people who suffer from similar symptoms. Include professional organizations in your searches as well as those geared to the layperson. They are helpful, not just in bringing out health news, but also in providing names of practitioners who have established credentials.
Step Two – Find Resources in Your Community
Social services are rooted in the local areas they serve. In an effort to make the search for services straightforward and standardized, there is a national program called 2-1-1 that is already reaching nearly 100 million people in 27 states.
There are two ways to access this service. If it is in your area, you can dial 211 on the telephone. You will reach a live person who has the ability to refer to a comprehensive database for your area to identify the specific agencies or providers you seek.
A New Service – 211
You can also go online at www.211.org. The site is organized by state, tells you how far along each state has come in setting up a 211 system, and maintains links to sites within the state that have directories of services. For example, Connecticut has one of the oldest statewide systems in the 211 networks, with referrals to 4,200 agencies. California expects to cover 67 percent of the state by 2005.
The United Way of America is one of the largest supporters of the 2-1-1 systems. There is a bill pending in Congress to add $200 million in financing to complete national coverage and increase service levels. In addition to 211, there are many small regional groups that maintain databases of services.
What to Do With the Information
Fennell cautions that referral agencies are not evaluation bodies so, once you receive a referral, you are on your own in determining whether that resource is right for you. Especially with a chronic illness that is not widely understood, you may have to dig a bit deeper and ask potential providers about their understanding of FM and their experience assessing and providing services for FM patients.
Reality Check
Getting help for a chronic illness is quite different than for acute illness. With acute illnesses, you go in, get treated, and the follow-up is generally pretty straightforward. With a chronic disease, however, the level of effort needed is akin to other major life transitions like starting a new job, or having a baby. When you are out there “in the field” researching services, finding help, and going up against the system, you have your work cut out for you.
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