Potsdam Fibromyalgia Support group - Get as DOC

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					       Potsdam Fibromyalgia Support Group
                                                         Newsletter
                                                            October, 2010
Talking With Your Doctor                                                  has several worksheets for gathering the above
                                                                          information; versions of these worksheets are available on
     When you have a chronic illness like FM, it is                       the Potsdam FM Support Group web page.
important to have a good working relationship with your
                                                                      Planning the visit
doctor, PA, nurse or other health care provider. (In this              Ask the receptionist which days and times are the least
article, we will refer to that person as your Primary Care                busy. If the visit is not an emergency, try to schedule for
Provider, or PCP.) You can optimize that relationship                     one of these slower times.
through effective communication. Whether your PCP is                   If you are new to the office, ask for the medical history
one of the great communicators or not, there are things                   forms to fill out in advance, so you can check your
that you can do to optimize the interaction. Much of the                  records at home to provide the most complete
following is drawn from an excellent booklet put out by                   information. Have all your previous records forwarded.
the National Institutes of Health, called “Talking with               At the visit
Your Doctor.” The information is intended for older                    Take notes on what your PCP tells you.
patients who have more health concerns and may be                      Better yet, bring a trusted person with you to your visit. It
taking more medications – both of which make the                          is normal for people to get a bit flustered and
information appropriate for people with FM.                               overwhelmed when talking with the doctor, and fibrofog
                                                                             makes it even more challenging. A second person can
Go to your visit prepared                                                    hear things, take notes, or remind you to ask questions
 Make a list of concerns and prioritize them. If you don’t                     or share important information.
   have time to get to everything in one visit, make sure                     If your PCP uses words or terms you don’t know,
   your primary concerns are addressed early on. It                                   ask to have them defined or explained. Write
   is realistic to address 3-4 concerns in one visit. If                              them down if necessary.
   necessary, schedule a follow-up visit to continue                              Ask your PCP to check your medications.
   down your list.                                                                    Should you still be taking all of them, if the
 Write down what changes in symptoms you have                                        doses are appropriate, and if any interact with
   experienced, when those changes occurred, what                                     one another or with certain foods.
   makes it worse or better. Rate the symptoms in                                 If your PCP prescribes a new medication or
   terms of the distress they cause, with 0=no                                        increases the dose on an existing medication,
   distress and 10=unbearable distress. This helps                                    ask what side effects you should be alert for.
   you and the PCP decide which symptoms are most                      Ask for written information, when available. The office
   important to address.                                                  may have information about topics such as incontinence,
 Make a list of all your medications (both prescribed and                irritable bowel, depression, anxiety, etc.. This will give
   over the counter), as well as supplements and herbal                   you time to process some of this information later at
   remedies you are taking. Or put everything in a bag and                home.
   bring it with you. Make a note if you have changed any              Recognize that your PCP has a limited amount of time for
   medications or doses recently, as well as if you have been             each patient. If you feel your PCP has not addressed some
   having side effects.                                                   of your important concerns, offer to come back for a
 Make a list of all the health providers you see, when you               second visit.
   last saw each, and if you have had any tests or procedures          Realize that your PCP may not have answers to some of
   done since your last PCP visit. If you have been to the                your questions, such as how you will respond to a given
   emergency room, note when and why.                                     medication or whether your symptoms will get better or
 It is often difficult for your PCP to measure how FM                    worse. Recognize that he/she is human.
   affects you.         Quality of Life questionnaires help
                                                                      Asking Questions
   summarize the effect FM has on your life physically,
                                                                       Medical tests: if your PCP suggests you have a test
   emotionally, and socially. You can complete and score the
                                                                          performed, consider the following questions:
   Fibromyalgia Impact Questionnaire on line at:
                                                                          o Why is the test being done?
   http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fiq.htm.
                                                                          o How will the results change my care/condition?
   Print out the results and bring it with you.
                                                                          o What is involved in having the test done?
 Make sure any past test results have been sent to you
                                                                          o Are there any risks or side-effects?
   PCP. It can be frustrating if your PCP doesn’t know the
                                                                          o When and how will I get the results?
   results and cannot tell you what the next step is.
                                                                       Diagnosis:
 If you write your medical information down, the PCP’s
                                                                          o Are you certain I do not have another condition
   office can make a copy to put in your chart, saving your
                                                                                causing some or all of my symptoms?
   talk time for concerns rather than listing medications or
                                                                          o How can I expect this to change over time?
   recent procedures. The Talking with Your Doctor booklet
    Medications (also consider asking your pharmacist):                  pain is awful,” your PCP will learn more if you say “the
     o What is this new medication for?                                   pain makes it difficult for me to stand for 5 minutes to
     o What should I expect when I start taking it?                       make a simple breakfast.” Rather than “I am really
     o How long before it is likely to take effect?                       dizzy,” explain “I get dizzy several times a day and have
     o Are there common side effects?                                     fallen twice in the past month.”
     o (If you are sensitive to medications, as many people           While you may be frustrated and angry about having FM,
          with FM are) Is this the lowest dose I can start with?          try not to project that anger onto your PCP, who may be
     o Are there any special instructions, such as foods or               doing the best possible for you. Managing FM is difficult
          medications that cannot be taken at the same time?              for everyone.
     o How long will I be taking this medication?                    Working with Other Health Providers
     o What are my other treatment options?                          Different issues may come up when working with other health
 Life-style changes:                                                providers, such as dentists, ob/gyn, cardiologist or the
     o What life-style changes can I make that might help?           optometrist, etc.. The Fibromyalgia Advocate, by Devin
          Should I change my diet or exercise habits?                Starlanyl, has a tremendous amount of information to help you
     o What kinds of exercise would be good for me?                  advocate for yourself, including worksheets to guide you
     o (If you smoke) What help can I get to quit smoking?           through common difficulties with various providers.
          Smoking aggravates many symptoms of FM.                    Resources used for this article:
     o Would it help for me to see a nutritionist, physical                Talking With Your Doctor, A Guide for Older People booklet (intended
          therapist, occupational therapist, massage therapist,      for older adults, but information applies to all adults)
          social worker, etc?                                        http://www.nia.nih.gov/HealthInformation/Publications/TalkingWithYourDoctor/
 Resources – where can I get help?                                        The Fibromyalgia Advocate, by Devin Starlanyl
     o Can I get help paying for certain medications not
          covered by insurance?
                                                                     October Potsdam Meeting:
                                                                        The Potsdam Fibromyalgia Support Group meeting,
     o Are any services available in the community? (such
                                                                     Thursday, October 28th, 6:30 will be a guided discussion:
          as counseling, someone to come to the home and
                                                                     “How to talk with your doctor.” For information about
          clean, transportation, etc.)
     o Where can I get more reliable information?                           meetings, contact CPH Physical Therapy Department
                                                                                        at 261-5460.
Making Decisions                                                                        NOTE: Because of the upcoming
Gone are the days when the physician made all the                                      holidays, the support group will meet
decisions and the patient did what he or she was told.                                     early during the months of November
Now, decisions should be collaborative between                                            and December. The November
you and your PCP.                                                                         meeting will be an open discussion on
 Ask about treatment or medication options.                                              Thursday, November 18th at 5:30, and
     Ask about both risks and benefits.                                                   the December meeting will be a
 Explain your preferences. For                                                           beading party (making bead jewelry),
     example, some people prefer to                                                     and will be either 12/9 or 12/16. There
     minimize use of medications and                                                    will probably be only one, combined
     are willing to accept more                                                      Nov/Dec newsletter.
     discomfort; others prefer to minimize
     pain but are willing to accept some side                                               Massena Meetings:
     effects.                                                                        Because of limited participation, the Massena
 Talk about alternatives to medications, such                                          Support Group will not meet for the winter
     as physical therapy, massage, relaxation                                           months. Anyone interested in helping to
     training, acupuncture, etc. may all help.                                         rejuvenate the group in the spring, please
How to Talk to your PCP                                                              contact facilitator Maxine Dodge, at 769-5778.
So far we have discussed what to talk to your PCP about. Here
                                                                     SUNY Potsdam Fitness Classes Start
are a few suggestions about how to talk to your PCP.                      SUNY Potsdam Adult non-credit courses start again soon (10/26
 Be concise and to-the-point when you explain things to             to 11/4 starts). Courses that may appeal to people with FMS: adaptive
     your PCP. Include those details you feel are important,         water exercise, Yoga, Alexander Technique, Tai Chi and deep water
     but don’t get distracted including every tiny detail. This is   jogging, Call 267-2167 or www.potsdam.edu/community/noncredit
     for 2 reasons: first, your PCP realistically has a limited      for info.
     amount of time to spend with you and, more importantly,
     you don’t want critical information to be lost in less          This newsletter is a joint effort of Clarkson University and Canton-Potsdam
     important detail.                                               Hospital. If you would prefer to receive these newsletters electronically,
 Be honest to both your PCP and yourself. Don’t                     please send your email address to gilberta@clarkson.edu. You can access
                                                                     current and previous Potsdam Fibromyalgia Support Group Newsletters on
     exaggerate or underrate your symptoms.
                                                                     our web site: www.people.clarkson.edu/~lnrussek/FMSG.
 Try to be specific and concrete. Rather than saying “the

				
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