There is no single laboratory test to prove ME. It can be a difficult illness to diagnose and many people who have ME struggle for years before getting an accurate diagnosis. This is partly because ME can be mistaken for other diseases or simply ignored by health care providers. In fact, studies show that ME is one of the most misdiagnosed diseases. More than 90 percent of people with ME are not diagnosed or are wrongly told they don’t have the disease at all.
A diagnosis of ME is based on symptoms and a thorough medical history. It is important to tell your doctor about any significant life changes you have had, as they may affect your condition. It is also helpful to make a list of all your symptoms, including those that are most troublesome.
In addition to extreme fatigue, ME/CFS can cause many other symptoms, such as unrefreshing sleep, pain in the joints and muscles, dizziness, periods of bloating or constipation, difficulty regulating body temperature, and difficulty concentrating. Some people have ME with a combination of other conditions, known as comorbidities, such as fibromyalgia (widespread muscle pain), postural orthostatic tachycardia syndrome (increased heart rate when standing up) and gastroparesis or irritable bowel syndrome (bloating and abdominal pain).
If you are living with ME, it is important to see a health care professional who understands your symptoms and how they interact with each other. A health care provider can help you manage your symptoms and develop a plan to get you back into the workplace or school. They can also help you apply for disability and obtain assistive devices, such as wheelchairs. A health care provider can also help you develop coping skills, such as using the pacing strategy, that can improve your quality of life.
You can find a health care provider who specializes in ME by looking in your local phone book or searching online. Health care professionals can help you learn about ME, determine if you have the disease and recommend treatments to relieve your symptoms. They can also provide information on how to work with a therapist, which can be very helpful for adults and children who have ME.
There is no cure for ME. However, you can take steps to manage your symptoms and stay as active as possible. It’s important to have a support network, whether it is family and friends or an ME/CFS support group. You can also use a health coach or counselor to help you build coping skills and address challenges you are facing, such as managing your illness at work or home. These health care professionals can also connect you with resources for families, individuals and communities. They can help you apply for disability, obtain an accessible home and vehicle and access other community services. In addition, they can help you find financial support and apply for benefits. They can also refer you to a specialized health care provider if needed.