Make your own free website on

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