Imagine being in pain, and none of your doctors can find a clear reason for it. Unfortunately, this is not an uncommon experience for many of the four million Americans living with fibromyalgia, a chronic, painful condition.
People with fibromyalgia experience widespread pain, aches, and stiffness in muscles and joints throughout the body, as well as unusual tiredness. No one knows what causes this condition, and no apparent physical cause has been identified thus far. A leading theory is that it’s due to a brain malfunction that amplifies normal nerve responses causing people with fibromyalgia to experience pain or other symptoms when nothing seemingly triggers them.
For those seeking relief, finding help can sometimes be a challenge. The best way to find a successful treatment strategy is to seek out a doctor who understands fibromyalgia, knows how to treat it and can help you understand and cope with this condition. Rheumatologists and pain specialists are the experts for this condition, but many primary care doctors diagnose and treat it as well. There are ways that you can improve your chances of finding the right doctor to help you with this condition.
Understand your condition
The first step in this process is to arm yourself with the facts.
1. Fibromyalgia is a real disorder. The American College of Rheumatology created criteria in 1990 and 2010 that doctors have used for research studies and in clinical practice. A 2016 revision of the criteria is the most recent effort to improve on these and includes three characteristic features:
- Significant and widespread pain
- Severe symptoms (such as fatigue or “brain fog”) present for at least three months
- No other clear explanation for these symptoms
2. Fibromyalgia often coexists with mental health conditions such as anxiety and depression, but it is not caused by mental illness.
3. Fibromyalgia is not “in your head,” but it is likely related to abnormal brain function. Differences in how the brain processes pain can be seen on functional MRI scans of people with fibromyalgia.
4. Standard approaches to treating fibromyalgia include patient education, exercise, treatment of other conditions that may contribute to symptoms (such as depression or sleep apnea) and medications.
5. The FDA has approved three drugs specifically for treating fibromyalgia, including pregabalin (Lyrica), duloxetine (Cymbalta) and milnacipran (Savella). However, other medications, such as amitriptyline (Elavil), cyclobenzaprine (Flexeril) or gabapentin (Neurontin) are usually considered first-line treatments. Each of these drugs is prescribed for other conditions, such as depression or nerve pain.
Seek providers who understand fibromyalgia
To find the right health care provider to treat your fibromyalgia, start with your primary care physician. He or she may be very experienced treating people with this condition. If not, request a referral to a specialist (such as a rheumatologist or pain specialist) to confirm the diagnosis and to guide treatment. It may help to get a recommendation from those who also have the diagnosis. Support groups can be a good resource for this. The National Fibromyalgia Association website lists support groups in each state that can help you make these initial connections. The organization can also provide a list of “fibro friendly” doctors in your state.
The following questions might help you decide if you and your fibromyalgia provider will be a good fit.
- About how many patients with fibromyalgia does the doctor currently treat?
- Does the practice offer telemedicine appointments?
- What types of services will they provide remotely, and which ones will require an office visit?
If the answers aren’t what you’re looking for, don’t be afraid to look elsewhere.
Finding the right doctor for your needs may not always be easy, but it’s worth the extra effort to increase your chances of successfully managing your condition.
(Kelly Bilodeau is executive editor of Harvard Women's Health Watch.)