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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