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“Your research reports provide a fascinating look at the cutting edge of a syndrome that many doctors do not believe exists. Also, I sent a Membership to a friend who has FMS; she also loves your publication."
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Coping Tips

Patient Rights | Expectations | Quality of Life | Self-esteem
Second Medical Opinion | Patient-Physician Relationships | Help is Available

Patient Rights - What are they and how do you assert them?

Even if you are in excruciating pain, you cannot force your doctor to prescribe a pain medication for you or refer you to a pain specialist. Timothy McCall, M.D., an internist and patient advocate, suggests relaying the seriousness of your pain to your doctor by creating an image. "Give specific examples from your life about how your pain affects you," says McCall. If you claim, "I am in such terrible pain, it hurts so bad that you can’t imagine how awful I feel," McCall says this is 'telling' and it is useless for conveying how seriously your symptoms are impacting your function. If you are concerned about the pain in your hands, you could say, "I have so much pain that I cannot button my blouse (or shirt)." This provides your doctor with a clear picture (e.g., showing) rather than merely stating you have hand pain (e.g., telling).

Jennifer Schneider, M.D., Ph.D., a pain and addiction specialist, says "most doctors prefer black-and-white situations." This is why they are comfortable prescribing opioids to cancer patients, but they may say 'no' when it comes to patients with fibromyalgia. "If your doctor is unwilling to consider opioids when 'everything else' has failed," says Schneider, "your best bet is to ask the physician to refer you to a pain specialist."

What do you do if your physician gives up on you, tells you that there is nothing else that can be done, or refuses to follow through with the treatment plan suggested by the pain specialist you were referred to? These and other common situations are also discussed in this article, which includes input from five specialists. Sometimes, asserting your rights may require you to fire your doctor if he or she is completely uncooperative ... but it all depends on the situation.

From the Fibromyalgia Network Journal, April 2005 (#69)

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Having Realistic Expectations

When you start a new treatment for fibromyalgia, you are bound to have expectations, but are they attainable? David Williams, Ph.D., says clinicians "should state openly and honestly what can realistically be expected before the patient tries any treatment." Understandably, it is hard to hang in there, trying one therapy after another, but Williams and two other physicians offer advice on what to do. In addition, here is a sampling of comments that were published from our patient survey on treatment expectations:

"Don't stop looking for what will help you function. Keep reading, keep asking questions, keep educating yourself."

"Be patient, there are many things you can do to feel better than you feel right now."

"If it worked, great. If it didn't, at least I tried it."

Can you relate to the above comments? Even if you have tried many therapies, the consensus of the patients responding to our survey was: "Don't give up!"

From the Fibromyalgia Network Journal, April 2004 (#65)

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Improving Quality of Life

"For people who are chronically ill, it may be difficult to make changes that lead to a more enjoyable life. Keep in mind that although one's physical self may be changed and limited, typically, one's creativity, one's character, one's values in life aren't disabled!"

"Give some thought to the skills, character, and talents that you have developed over the years. Using those assets, make a commitment to yourself (and to someone else) to get involved in a new activity, preferably one that includes interaction with other people."
– Don Uslan, M.A., M.B.A, L.M.H.C.

From the Fibromyalgia Network Journal, January 2004 (#64)

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Increasing Self-Esteem

Memories of past achievements make nearly all facets of life subject to evaluations that diminish self-esteem. An opportunity for new learning, new experiences, and a new baseline against which to evaluate future performance is needed. Choose new activities that are completely different from what you have done in the past, and that are not related to your career or social status.

Take control of something—anything. The symptoms of fibromyalgia and their fallout can cause you to feel out of control in many spheres of life. A sense of control is essential to boosting self-esteem, but is obtained only after multiple successful experiences. The good news is that control doesn't need to occur in every aspect of life. Control in one area (e.g. church choir, being an involved parent, keeping a beautiful flower garden) is sufficient to boost self-esteem.

From the Fibromyalgia Network Journal, April 2003 (#61)

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Asking for a Second Medical Opinion

If you harbor doubts about a diagnosis or you feel a different treatment avenue should be tried, you would be wise to seek a second medical opinion. Yet, asking for it may not be easy. Don Uslan, M.A., L.M.H.C., says that the words "second opinion" can imply a "no-vote" of confidence in your doctor and may irritate even the most compassionate provider. Uslan offers different approaches you might try with your provider, such as bringing in an article from a reputable source about a therapy or test you wish to try. This allows your physician time to digest the new material and shows that you are still appreciative of his or her care.

From the Fibromyalgia Network Journal, January 2003 (#60)

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Advice on Patient-Physician Relationships

How do you handle a physician who shoots down your treatment suggestions, or worse yet, doesn’t even believe that your fibromyalgia symptoms are real? Or, what should you do if you feel 'stuck' with an HMO gatekeeper who has little knowledge of your condition? Fibromyalgia Network consulted six therapists to provide advice on how to handle these types of situations. Here is a bit of advice from Randy W. Martin, Ph.D.:

"If you think that your doctor might be receptive, give him or her literature to support your viewpoint about therapies and gently try to educate them. Depending upon the reception you receive, you may want to change your HMO doctor. The best way to go about this is to ask your HMO to allow you to interview a few doctors. Then you can make a switch to a doctor that is more to your liking." The same advice holds true for patients in a PPO plan: don't hesitate to interview a doctor before you sign on with them.

From the Fibromyalgia Network Journal, July 2002 (#54)

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Help is Available

Learning to co-exist with the unyielding pain and fatigue of fibromyalgia can be a tough job! If you are struggling with this issue, Fibromyalgia Network's "Coping Pack" is available to provide you with strategies that will help. In fact, the above advice represents small excerpts from the six Journal issues in our Coping Pack. You can also purchase one or more of the above issues individually, but why not get all six at a 50% discount when you select our 6-Back Issue Membership Pack? Click here for more details.

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