Education of the Fibromyalgia Patient Save

This week's Daily Download is the fibromyalgia “packet” we give to our patients once they have been diagnosed with fibromyalgia. Rheumatologists vary widely in their propensity to manage FM – we generally see patients for 1 or 2 visits and then refer them back to their primary care physician or possibly to a sleep, pain or psychiatric specialist depending on the underlying problem(s).

This packet of patient education material is shared with the hope that you can better educate your patients whether you chose to either diagnosis or manage FM. FM can be difficult to manage with many conflicting issues centering on education, acceptance of diagnosis, medication compliance and conflicting messages that patients must deal with.

We have found this useful in daily practice and will take 10-20 minutes to explain the handout, page by page, with the hope of improving understanding, compliance and reducing the need for return visits and frequent phone calls.

In this “FM Packet” you will find the following:

1. Cover letter. This states our (or your) policy on managing FM patients. We explain up front that we intend to diagnose and start treatment, but will hand over future management to the physician of their choosing or our recommendation. Herein you may also explain your policies or preferences on follow-up visits, phone calls, forms, refills and narcotic use.
2. Fibromyalgia Guide. This is the overview of FM, in text format, that explains what FM is, who gets it, theory on causation or worsening and what can be done about it. In daily practice, I tend to tell patients to read and review this page after the visit. Instead I spend more time on the next page (Diagnosing Fibromyalgia) which is a graphic representation of FM.
3. Diagnosing Fibromyalgia. This is the most impactful of all the pages in this packet. Patients will agree with you as you point and review the key features (widespread pain, poor sleep, no joint damage, etc.) and point to the areas of pain on the trigger point map. Upon further review of the “spin off” symptoms that accompany pain and poor sleep (e.g., headache, numbness, and fatigue), patients uniformly recognize this as the constellation of symptoms they have been dealing with for months or years.
4. Treatment of FM. My multidisciplinary approach requires patients to recognize that all four goals of treatment must be managed to achieve improvement – pain, sleep, exercise and depression/anxiety if present. In reviewing this page (in detail), I usually point out that pain meds only provide a minority of pain relief and that narcotics are not needed or helpful in pain management. Moreover, the most neglected, undertreated and misunderstood part of FM management is sleep adequacy. If this is addressed and treated, patients can be 50-70% improved with sleep measures alone. Exercise must focus more on stretch (pool, yoga, etc.) and avoidance of aerobic exercise (gym, weights, walking) when active.
5. Sleep Hygiene. These are time-honored 12 steps for better sleep. I emphasized, several times, the importance of sleep habits and will recite for them #5 on the list – “Your bed is your special place for sleep only. Do not read or watch TV in bed. Your bed should be free of books, magazines, remote controls, computers, cell phones, food, children, pets, and snoring spouses. Your bedroom is NOT a place to hang out; it is NOT your office; and it is NOT “command central” for you or your family”.
6. FM: Treating Poor Sleep. This is an algorithm that I encourage patients to review on their own. Frankly, I’m not impressed with the impact or instructional value of this and the next algorithm.
7. Fibromyalgia: Treating Pain. Another algorithm, this one on pain, for the patient to review on their own.

Download the packet here.