Potsdam Fibromyalgia Support group
Newsletter
March, 2005
How to Make the Most of a Doctor’s
Visit
Do you ever leave the doctor’s office
feeling like you didn’t get the most out of
it? You can improve the quality of
your doctors’ visits by being properly
prepared. The American Chronic
Pain
Association
(ACPA
at
www.theacpa.org)
offers
the
following suggestions when seeing a
new physician:
1. Write out your medical history
before you go, so you have time to remember
everything that might be important and get it in
chronological order. This way, you won’t get
flustered and forget things or jump around.
2. Write out a description of your pain, including
location, intensity, quality (e.g., burning,
shooting, aching, etc.). Note what makes the
pain better or worse.
3. Explain how the pain has affected your life –
what you can no longer do. The ACPA has a
Quality of Life scale that may help your doctor
understand the impact pain has had on you.
4. List what treatments you have received for this
pain, how those treatments worked, and whether
there were side effects. For medications, note
what dose and how long you used the med.
5. Remember other medications you have used for
pain, including different types or episodes of
pain; this may help your doctor find medications
that will work for you this time.
6. Bring all your medications with you, including
over-the-counter meds, herbal treatments and
vitamins.
7. Bring X-rays, CTs, MRIs or other tests. You
may want to ask the doctor if he or she wants
the actual films or just the reports.
8. Make a list of questions you want answered.
Order them starting with the most important, in
case you can’t get through the whole list in one
visit.
9. Make a list of your goals for treatment.
10. Bring a friend or relative who can listen or take
notes for you. Seeing a doctor can be
overwhelming and it is difficult to remember
everything you hear. If you can’t bring someone
with you, consider taping the session – let the
doctor you are taping it and why.
11. Prepare for the stress of the experience. Talking
about your pain can be a very emotional
experience. Try not to let becoming upset take
too much time from the doctor’s investigation.
For follow-up visits:
12. Keep track of how you responded to different
treatments. Keep a daily diary so that your
information is accurate and complete. Track
specific activities to see if you can now do more
than you used to be able to do.
13. Bring a list of new questions.
14. Bring a friend or family member to listen for
you.
The FMS Million Letter Campaign
This year, for Fibromyalgia Awareness Day,
people nationwide will be writing letters about their
experience with FMS. The goal is to have 1 million
letters mailed on May 1st, so that they all arrive just
before Awareness Day (May 12th). You can find
detailed information about the campaign at:
http://www.fms-help.com.
The general idea is to write a letter no more than
1 page long. Include the following information:
 Name and address
 Occupation or achievements prior to
having FMS
 Date and cause of onset, if
known
 Symptoms
 How FMS has affected your
career, finances, relationships or family
 What you want recognition of FMS for (e.g.,
understanding from family & friends,
recognition from doctors, better access to
disability, money for research, etc.)
The Million Letter Campaign asks each person
to send 5 letters, one each to: Laura Bush, ABC
News, Fox News, 60 Minutes, and Montel
Williams. You don’t have to have FMS to write
letters – family and friends can also write letters on
your behalf. The www.fms-help.com site gives
more info and all the addresses.
Fibrofog
Fibrofog – trouble concentrating or
remembering – can often be one of the
most distressing aspects of FMS. It
can be inconvenient, embarrassing,
or can be an outright threat to your
job or safety. Scientists still do not
know what causes fibrofog, though
trouble
sleeping
probably
contributes.
Research shows that people
with FMS have trouble accessing
knowledge, trouble concentrating on what they
hear, slowed problem-solving, and slowed
psychomotor function. These difficulties appear to
be due to changes in the neuroendocrine system –
hormones that regulate response to stress.
The Arthritis Foundation and FMAware offer
the following suggestions for dealing with ‘the fog’
(www.arthritis.org and search for ‘fibrofog’):
1. Repeat things to yourself to fix it in your mind.
2. Write it down. Be consistent about where you
write things: use a calendar or keep a small
notebook with you all the time.
3. Do things that require concentration at the time
of day when your mind is clearest.
4. Get medical problems treated. Depression, pain
and sleep disturbance all affect concentration.
5. Check your meds: some drugs for pain, sleep,
hypertension and allergies affect concentration.
6. Learn relaxation techniques; stress impairs
memory and concentration; relaxation helps.
7. Use mnemonics and rhymes to remember
things such as where you parked the car.
8. Keep your mind active: read books, do
crossword or jigsaw puzzles. The more you use
your mind the ‘fitter’ it stays.
9. Get moderate exercise – it helps clear the mind,
decrease stress and depression; exercise also
improves blood flow to the brain.
10. Explain your memory problems to family and
friends so that they can be supportive.
11. Breathe: deep breathing and relaxation
breathing both improve oxygen to the brain.
12. Keep the environment quiet: keep radios and
TVs off (exception: exercise to music helps).
13. Take your time. Rushing makes it more likely
you will forget something.
14. Keep a sense of humor. This reduces stress, in
general, and the stress of fibrofog in particular.
In the FMS News
The December-March issue of FMAware includes
an article that discusses the possible role of
dopamine in FMS. Dopamine is a neurotransmitter
(chemical that relays information from one nerve to
another) best known for its role in Parkinson’s
disease. However, it is also involved in Restless
Legs Syndrome (see the January Newsletter for
more on RLS). Research shows that people with
FMS who do not have night-time leg movement
may still have the brain-wave pattern abnormalities
seen in RLS.
One of the medications used for Parkinson’s,
pramipexole, is also sometimes used with RLS.
Recent research shows that some people with FMS
– who don’t have RLS or Parkinson’s – may also
benefit from pramipexole. This medication
specifically affects the dopamine receptors, and
might offer another approach to managing pain and
fatigue in FMS.
The role of dopamine in pain is not yet clear.
However, it seems to play a role in the body’s
‘fight-or-flight’ response. The ‘fight-or-flight’
response is mediated by the sympathetic nervous
system, which affects sleep, heart rate, blood
pressure, temperature regulation, bowel and bladder
activity, immunity and metabolic rate. More
research is needed to learn whether dopamine
medications can become part of standard FMS care.
March Potsdam Meeting:
The Thursday, March 24th Potsdam meeting will
be an open discussion about your personal questions
or experiences related to FMS. The meeting is at
6:30 at 59 Main St, in Clarkson Hall.
April Massena Meeting:
The Massena Fibromyalgia Support Group’s
April 12th meeting will be an open discussion. The
meeting is at 6:30 at Massena Memorial Hospital.
For more info, contact facilitator Maxine Dodge, at
769-5778 or maxinesbeach@wmconnect.com.
This newsletter is a joint effort of Clarkson University and
Canton-Potsdam Hospital. If you would prefer to receive these
newsletters electronically, please send your email address to
gilberta@clarkson.edu. You can access current and previous
Potsdam Fibromyalgia Support Group Newsletters on our web
site: www.people.clarkson.edu/~lnrussek/FMSG.