Porphyria Educational Services
Porphyria Educational Services Bulletin Vol. 2 No. 35 September
3, 2000
FOCUS: Controlling pain in porphyria
Most all acute or chronic porphyria patients seek
treatment for chronic pain each year. Relief is as individual as
the pain itself.
For some porphyria patients a certain medication or a particular
type of nerve block or physical therapy may make a significant
difference. But with most porphyria patients the solution lies in
a multi-part approach to reversing the chronic pain.
Often porphyria patients are being referred to pain management
specialists after the patient has a definite confirmation of
their diagnosis. Unfortunately often those yet to receive a
confirmed diagnosis as considered "drug seekers" when
they seek medical attention for pain control.
Pain management is a special type of approach used by clinicians.
Many scientific studies have documented the value of this
approach, regardless of the specific cause or duration of an
individual's chronic pain.
It must be noted that pain management extends beyond medications.
It also includes a comprehensive plan of exercise, relaxation and
behavior change.
Patience also needs to be practiced by the patient. It is
important to remember that there is no quick fix for chronic
pain, and managing pain isn't about making it disappear. In fact
pain management is about keeping pain tolerable. There are many
ways to reach this goal..
First and foremost the porphyria patient needs to find a
knowledgeable primary care provider. This person can be any
physician or health care provider that you trust.
Then ask for a referral to a pain clinic or pain center. Please
note that there is no one standardized definition or treatment
that is offered. Pain clinics can range from one physician with a
special interest in pain to whole teams of physicians, nurses,
psychologists and physical or occupational therapists who provide
a coordinated, multidisciplinary approach.
When speaking with your primary care provider be specific about
having a referral to a reputable pain center or clinic that can
offer the type of program effective for you. You should remember
that your primary care provider knows you better than anyone else
and can be better able to match your pain symtomology with the
type of pain clinic or pain specialist able to work with you for
your behalf.
Before seeing such a pain specialist or clinic you need to do a
few things.
Keep a pain journal and record the therapies and activities that
alleviate your pain. A journal also helps track cycles of pain so
you are aware of when pain worsens and how to ease it.
Be sure to chart precisely when and how the pain presents, and in
relation to porphyria attacks or other specific porphyria
symptoms. Determining your different pains will help the pain
specialist narow down which and what pains need to be treated.
It has long been known that exercise helps alleviate pain. Get
started on an exercise program. Increasing your flexibility,
aerobic and strength capacity improves overall fitness, reduces
risk for further injuries and helps control pain.
The porphyria patients also needs to have a healthful balance of
activities. Each porphyria patient needs to have time for work,
exercise, socializing with friends and family, hobbies,
recreation, relaxation and most of all rest . A good night of
sleep is essential for the well being of the porphyria patient.
Another thing about the exercise is that it may soften pain and
keep your spirits up. If you are too busy or too bored, chronic
pain can be overwhelming.
Ann Brown, PA Pain Management