Tips and Tools
Here are our helpful hints, words of wisdom and a veritable top ten list for individuals with chronic pain and fatigue.
- Focus on what you need to do to get better, not what caused your illness. In short, look forward, not backwards. Scientists don't know what caused your illness or why certain events in your life may have led to the symptoms you feel every day. Work with your health care provider to determine the best treatments for you.
- Look for treatments, not cures. Very few chronic illnesses have known cures. This includes fibromyalgia and chronic fatigue syndrome. Focus your energy on treating your symptoms.
- Find a health care provider who will work with you. Nothing can be more frustrating than a health care provider who you feel is not listening to you or is not addressing your primary concerns. There are many good doctors and therapists out there - do your homework, ask questions, talk to other people who have chronic pain and fatigue. Once you find someone you like, you can work with your health care provider to:
- Think ahead and communicate your thoughts or questions effectively. Before your appointment, write out your comments or questions. Try explaining rather complaining to your health care provider and work together to address your concerns.
- Suggest a series of short visits each addressing specific issues. In today's world of 15 minute (or less) doctor visits, prioritize and skip the long lists. You might not get anything addressed if there are too many things to choose from.
- Gently educate, with credible sources of information (for example, share this article on Fibromyalgia by Dr. Clauw).
- Try exercise and Cognitive Behavioral Therapy (CBT). Exercise and CBT are known to help manage pain, fatigue and mood changes. They also are great ways of getting involved in your own treatment and improving your overall well-being.
- Try tested therapies before untested therapies. We're all about patient safety at the CPFRC and Michigan Medicine.
- When trying any therapies (tested or untested), do your own personal clinical trial:
- Make sure the treatment is safe (#5 is so important, it deserves repeating).
- Only start one new treatment at a time so you'll know exactly what helped or hurt.
- See if you get better when you are using the treatment.
- See if you get worse when you stop the treatment.
- See if you get better again when you re-start the treatment.
- If the treatment passes this test, then it works for you.
- If you are still having symptoms, seek out a treatment that is likely to help those symptoms, and add it to the above treatment.
- When your symptoms get worse, don't assume it's because a treatment has stopped working and stop your existing treatments or look to add new treatments. The natural history of these illnesses is to wax and wane. Look for stressors in your life or changes in your behavior that may have made symptoms worse. Keep in mind that it can be dangerous to suddenly stop taking certain medications or to add medications to ones you may already be taking. Always talk with your health care provider before you make any changes.
- When a treatment improves symptoms, you should also increase function. Many chronic pain patients report poor function. If this describes you, it is very likely that this has had a negative impact on your own life and well-being, as well as the lives of those around you. If you find a treatment that helps your symptoms, take advantage of it, but don't stop there. It is crucial that you also begin to increase your day-to-day function as your symptoms improve. Do this in moderation; introduce (or re-introduce) activities or work into your life slowly. Always start low and go slow. Always avoid overdoing it just because you finally feel pretty good.
- Think very carefully about seeking disability or litigation. The processes of seeking disability or litigation are huge life stressors. The end results are almost always permanent, whether or not you wanted permanence. Additionally, it typically does not result in better health or function.
- Remember - THERE IS HOPE! Most people who use treatments known to work get better and live rewarding lives. Educate yourself, get involved in your own health care and, most importantly, participate in life and find ways to have fun.
There is significant interest by the National Institutes of Health and the pharmaceutical industry in chronic pain and related illnesses. The more money that is spent on studying these illnesses, the more effectively we will be able to treat them.