Porphyria Educational Services
Porphyria Educational Services Bulletin Vol. 2 No. 42
October 22, 2000
FOCUS: Tips for Managing Pain
For porphyria patients most types of chronic pain vary day to
day. It has been found that some lifestyle moderation can be
useful in regulating the pattern of good days and bad days.
Because it is easy to relapse into old habits when a "bad
day" occurs, it is highly recommended that people use pain
management techniques every day. And while you use some
techniques on a daily basis be sure to keepsome special
techniques in reserve to use on particularly bad days.
Some tips for managing chronic pain include the following:
1.Set pain management goals and follow through on them. Select
your greatest pain concerns and set specific goals to address
each one.
2.Monitor your progress. Use a chart or visual aid to display
your progress as you attain each goal.
3.Write yourself a contract. By making a pledge to yourself, you
can honor your commitment to managing pain just as you have
honored other binding agreements in your life.
4.Plan each day. By scheduling things like exercise, or using a
"to-do" list, you are more likely to accomplish your
goals.
5.Keep your surroundings healthful. Rid your home of things that
might lure you back into unhealthy habits. Make sure your house
reflects your positive, active attitude.
6.Join a porphyria support group. If you do not live close to
others, be a part of an email support group. Support from
friends, family and your physician can help keep you on track and
help on difficult days.
7.Work as a team with your doctor. Keep your doctor posted on
your progress. This way you can work together to overcome
obstacles when they arise. Remember that most doctors have never
had a previous porphyria patients, and so you must learn
together. And remember that you are only one of the doctor's many
patients, and therefore does not have all of the encessary time
to completely research your disease. Porphyria patients can
easily exchange information through porphyria email support
groups and then share the information with their primary care
physician.
8.Stay positive. This will keep your spirits up and maintain your
ability to overcome and manage pain. A good self-image and having
good self-esteem is essential.
9.Prepare for challenging situations. Chart a list of challenges
and create a response plan. Anticipate and plan for situations
that may take you by surprise.
10.Do self-appraisal and by all means reward yourself. Treat
yourself to something enjoyable each time you reach a goal or
execute a pain strategy. This will reinforce your positive
attitude and accomplishments.
Laurie James, RN, MNS