I was diagnosed with fibromyalgia well over a decade ago. The doctor listened to my symptoms, performed the trigger point test, and declared that I had fibromyalgia. I remember all of that. I remember my doctor wanting to work hard with me and try everything in his arsenal, and I felt reassured by that.
What I don’t remember was a depth of discussion of fibromyalgia. Of course, we don’t know exactly the cause and people’s symptoms differ, but even those things are important to know.
Some of this is of course doctor and era specific. A recent doctor I consulted for a second opinion at least had a working theory of early trauma that causes the body to develop with an overblown reaction to pain stimulus, and the cluster of conditions known to be associated with this phenomenon.
Here is a brief discussion of what I think patients deserve to know or have.
What to expect: Fibromyalgia is stressful enough without painful surprises. Fibro sufferers know there are numerous symptoms other than mere “pain” and “fatigue.” I spent countless hours at specialists uselessly trying to figure out things that I’ve since concluded are merely part of the universe of symptoms that I originally didn’t know existed, from seemingly minor but excruciating symptoms like phantom itching, that deep creepy crawly itching that doesn’t respond to scratching, to more systemic problems like abdominal pain.
How to cope with the pain: As discussed below, there are some proven ways of addressing pain outside of medication, which is important since medications are so rarely effective in treating fibromyalgia pain. How can doctors discuss treating fibromyalgia without this? I was completely unaware, although one figures these things out the hard way, of spoon theory, and of pacing, important ways of living fully despite symptoms.
A network of helpers: Rheumatologists shouldn’t work alone. Patients need a network of care. Doctors can provide references to:
- occupational therapist: An initial appointment can assess where patients are and provide them with information about what kind of help is available in the future. Occupational therapists are trained to help adapt environments and tasks to the person, preventing and treating injury and pain. These helpers can help you perform tasks with adaptive technology or better techniques.
- pain management and grief psychologists: Techniques like deep breathing and music therapy are proven to have benefits when dealing with pain. Bringing in mental health professionals ensures that multiple treatments are explored. Further, it is unfortunate that many doctors are not comfortable with nor aware of the complex emotions patients may endure with chronic illnesses. In that case, it is important to, from the beginning, provide patients with a list of psychologists who do understand and can work with the aspects of loss the patient will face, relationship and family issues, and work related problems. I say psychologist because I am reluctant to say LPCs are trained adequately to work on this specific issue. Doctors should inquire into the expertise of anyone they recommend.
A pamphlet that reinforces what you’ve learned: Fibrofog, another symptom of which I was not informed, is an extremely common cognitive dysfunction making things like retaining information challenging. Beyond that, anyone receiving a life-changing diagnosis after so long looking is bound to be unfocused, taking in more information than can be processed in the moment.
In short, the doctor should expect the patient to not retain for the rest of their lives what they are learning in one 15 minute visit.
Visits should reinforce important facts about the illness and its treatment: Smart doctors often don’t appear so to patients, because they forget that the patient can’t read the doctor’s mind. The doctor may be working from a solid theory, understand the connections, know what’s coming next, and know what the patient should expect. If none of that is communicated, only a terse prescription, the patient is left without a lot of valuable information, and probably a lot of fear, disappointment, and confusion. Appointments are a good time to put assumptions aside and briefly revisit what the doctor thinks the patient already knows. After all, this is a lifelong diagnosis. One omission at the beginning can have huge consequences for the rest of the patient’s life.
Surely doctors are tired of self-diagnosing Googlephiles. In that case, stop driving us to google and share your expertise. The fibromyalgia community shouldn’t have to doctor ourselves. In the age of insurance, maybe good care is too much to ask. But that’s a blog for another day.