As director of the Chronic Pain and Fatigue Research Center at the University of Michigan, Dr. Daniel Clauw, MD, is one of the world’s leading CFS & FM researchers. His advice for patients is distilled from years of clinical experience.*
ADVICE TO FM & CFS PATIENTS
1. Focus on what you need to do to get better, not what caused your illness.
Look forward, not backwards.
2. Look for treatments, not cures.
Physicians cure very few chronic medical illnesses; FM/CFS is not likely to be one of them.
3. Find a health care provider who will work with you.
• Explain, don’t complain.
• Suggest a series of short visits each addressing specific issues. Skip the long lists.
• Gently educate, with credible sources of information (i.e., scientific articles).
4. Try exercise and Cognitive Behavioral Therapy (CBT).
People who recommend them don’t think you are lazy (exercise) or crazy (CBT).
5. Try tested therapies before untested therapies.
6. When trying any therapies (tested or untested), do your own personal research. Make sure the treatment is safe.
• Only start one new treatment at a time.
• 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.
7. When your symptoms get worse, don’t assume it is 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 or changes in behavior that may have made symptoms worse.
8. When a treatment improves symptoms, you must correspondingly increase function.
9. THERE IS HOPE!
• Most individuals who are treated with existing treatments that are known to work get better and can live normal lives.
• There is significant interest by the National Institutes of Health (NIH) and the pharmaceutical industry in this spectrum of illnesses. The more money that is spent on studying these illnesses, the more effective we will be at treating them.
* This article is reproduced with kind permission from the website of H.O.P.E. (Helping Our Pain and Exhaustion) – a Michigan-based organization by and for people with Chronic Fatigue Syndrome and Fibromyalgia. Its founder, Dr. Sharon Ostalecki, PhD, is author of the highly-rated new book Fibromyalgia: The Complete Guide from Medical Experts and Patients.