Advice to Patients
Following are our helpful hints, words of wisdom and a veritable top ten list for individuals with fibromyalgia.
- 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 everyday. Work with your doctor to determine the best treatments for you.
- Look for treatments, not cures. Very few chronic medical illnesses have known cures. This includes fibromyalgia and chronic fatigue syndrome. Until researchers find a cure, 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 fibromyalgia. Once you find someone you like, you can work with your health care provider to:
- Explain, don't complain. In other words, think ahead and communicate your thoughts or questions effectively. Better yet, write out your comments/questions. Complaining simply isn't effective.
- 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 (i.e., scientific articles).
- Try exercise and Cognitive Behavioral Therapy. People who recommend them don't think you're lazy (exercise) or crazy (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 Chronic Pain and Fatigue Research Center and the University of Michigan Health System.
- 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. For drug treatments, 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. Be sure to check with your doctor before you make any changes.
- When a treatment improves symptoms, you must correspondingly increase function. Many fibromyalgia 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. And 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 normal lives. Educate yourself, get involved in your own health care and, most importantly, participate in life.
There is significant interest by the National Institutes of Health and the pharmaceutical industry in fibromyalgia and related illnesses. The more money that is spent on studying these illnesses, the more effectively we will be able to treat them.