 Learning
to approach our doctors is a key element in dealing with fibromyalgia.
If your physician has diagnosed you by performing the tender point
index test, then at least he/she is aware of fibromyalgia and knows
how to diagnose it properly. If your physician has just taken your
symptoms and assumed that you have fibromyalgia without doing the
tender point index test, then it is possible that you may not actually
have fibromyalgia. In this case, it may be necessary to change
physicians. If this is impossible for a number of reasons, then asking
for a referral to a specific Rheumatologist or internist, whom you
have heard is knowledgeable in fibromyalgia, is the next step.
Depending upon where you live, there may be a cost involved in this,
but it is worth it in order to receive an accurate diagnosis.
Once
you've been given an accurate diagnosis, it is important to make each
of your subsequent visits worthwhile to you. The standard treatment of
Elavil or other antidepressants may not work for everyone, so it may
be necessary to try different medications in order to find one that
reduces symptoms. Thus, monthly appointments become necessary after an
initial diagnosis.
Since
both your time and your physician's time are important, taking a list
of questions helps both parties. Keeping the list to about five
questions or concerns helps the physician focus on the main problems
that you are currently dealing with on a daily basis. If your
physician had done a battery of lab tests and informs you that they
are all normal, ask what your results are and what the range of normal
is for the lab that performed the tests, and write them down.
When
medications are changed, keep track of any changes in your pain or
fatigue levels. Most medications have side effects, and although not
everyone experiences all of the side effects of a particular drug, it
is important to document any changes. Some medications, such as
antidepressants take time to work, but if after a couple of weeks, you
are still groggy in the mornings, not sleeping well, or having side
effects which aren't lessening, then it is time to look at something
else to raise the seratonin levels in your body.
Some
physicians are reluctant to prescribe narcotics for pain, but it has
been shown that people with chronic pain do not become addicted. As
long as the amount of narcotics does not increase over time, then no
addiction has occurred. We may become dependant upon narcotics, so it
is important to monitor one's use on a daily basis and inform your
physician of any need to increase pain medication. Discussing the need
for pain control can be very difficult with some physicians. Either
they worry about addiction, the loss of their medical license, or have
no idea how much physical pain someone with fibromyalgia can have.
Just saying that you have pain isn't helpful for either you or the
physician. Show him/her where the pain is, and describe a typical day
of trying to walk, or do normal activities of daily living. Describe
how your sleep is interrupted by pain, and explain all the things that
you do to relieve the pain such as warm baths, stretching, or massage
in order to show the doctor that you need something stronger than just
over-the-counter medications.
If
a specialist is seen along with a primary physician, usually the
specialist will send a report to the primary physician, but it is
important for you to check with your primary physician to see if this
was done. If not, tell your primary physician of any changes in
medication that the specialist made so it can be documented on your
chart.
If
you've decided to see a naturopath or are taking herbs, vitamins, or
other suppliments, it is extremely important to inform your primary
physician of how much and what you are taking. Combining herbs and
medications can be dangerous, and even a naturopath should be made
aware of any medications that you are taking on a regular basis.
Taking
information about medications or suppliments that you've found on the
internet, through magazines, or newsletters from a fibromyalgia
support group may be helpful for your physician. A general
practitioner may not have the time to read current studies being done
on fibromyalgia. By taking studies to your physician shows him/her
that you are actively seeking ways in which to help yourself rather
than just depending upon your physician to manage your care. This is
one area where open communication between you and your physician is
extremely important.
If
your symptoms are making it difficult for you to work, and the quality
of your life is reduced to working, and then going home to lie down
for the rest of the day, then obtaining disability becomes an issue
that needs to be addressed. When handing disability forms to your
physician, make sure that he/she writes that "you are unable to
work at any job at this time." What you write on your forms must
match what the physician writes on his/her forms, and the best way to
do this is to take both forms and compare them before they are mailed.
The best approach is to be present in the room when your physician
fills out the forms. It is important to make a specific appointment
for this alone due to time factors for your physician. Again, open
communication is very important.
If
you are seeing your physician for something else that is not related
to fibromyalgia, or if you are unsure of whether you have a new
symptom or not, it is important not to assume that all aches and pain,
or even increased fatigue is related to fibromyalgia. Just because you
have fibromyalgia doesn't mean that different complaints are related.
For example, chest or abdominal pain, or changes in your bowel
function may mean that something else is occurring. A good physician
will not just assume that these new symptoms are related to fibromyalgia. He/she will order tests, and check you for other
conditions or diseases before looking at a new symptom as being
related to fibromyalgia.
Stress
and emotional factors do affect pain and fatigue levels, so it is
important to tell your physician of any changes in your life. For
example, conflicts with family or friends, the loss of a loved one, or
anything that causes emotional distress needs to be talked about with
your physician.
Do
not expect your physician to cure you. There is no cure for
fibromyalgia, but the symptoms can be controlled to a certain degree
once you've found what things help you. Becoming a functional human
being is the main goal, and if it means that changes in your life
style need to be made, it is your responsibility to make the changes.
Your doctor may make suggestions regarding exercise and reducing
stress, but it is your responsibility to inform him/her what seems to
help you and what actually makes your symptoms worse.
A
physician is only a human being who has a medical degree, and we are
the consumers of their care. By learning to approach a physician
assertively, honestly, and openly, we will not only be treated with
respect, but also listened to concerning our needs for pain medication
and emotional support.
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