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Doctor to Doctor—What do they say?

It isn't always easy for your doctor to keep up-to-date on the most effective approaches for treating fibromyalgia or chronic fatigue syndrome. At an International Association for Chronic Fatigue Syndrome (IACFS) meeting, a panel of five fibromyalgia/chronic fatigue syndrome experts assembled to answer the questions of 200 treating physicians. The panelists included:

So that you and your physician can benefit from their wealth of experience, the most interesting questions and answers are provided below.

Question: What type of physical exam do you perform on your patients initially and at follow-up?

Natelson: All of my patients are seen by other doctors before they visit me, but as a neurologist, I do a complete neurological exam. A fibromyalgia or chronic fatigue syndrome patient may exhibit two neurological findings. One is called the Tandem Romberg. The patient places one foot in front of the other with their knees slightly bent, and they shut their eyes for five seconds. Many patients have trouble with this balancing test, and it is a "hard" neurological sign. The other test that can be done is positive in about 10 percent of patients. Take a cotton swab and very gently brush it against their toes and their fingertips. If they can't feel it, this may suggest that they might have peripheral neuropathy that adds to their fatigue and may make this patient a bit different to treat.

Bateman: How well you document your physical findings in your charts may come back to haunt a patient should they need to apply for disability. Be sure to notate findings that you know are present in patients and do this at regular intervals.

(Lapp commented that there were many standardized forms and computerized neurocognitive tests that can easily be administered to patients to provide a fairly objective measure of progress.)

Question: Do you have difficulty getting your patients to see primary care providers (PCPs)?

Bateman: I used to be a PCP, but now I require that all patients have a PCP prior to attending my clinic. This guarantees that I have a partner to work with for the care of my patients.

Lapp: We require a PCP, but nevertheless, many of our patients have had bad experiences with PCPs and they hesitate to return to that practitioner because they don't know what they are going to face. They worry that their PCP may be hurtful or disrespectful to them, so many will ask that we perform their primary care evaluations, except for the gynecology exam.

Question: About 75 percent of my adult fibromyalgia and chronic fatigue syndrome patients meet the criteria for attention deficit disorder (ADD). What role do you see for using central nervous system (CNS) stimulants for treating these syndromes?

Lapp: We presented a paper at a meeting on the use of an activating drug called Provigil for treating fibromyalgia. Half of the patients improved with the standard dose of Provigil (200 mg/day). A researcher at the Cleveland Clinic noticed that most fibromyalgia and chronic fatigue syndrome patients have signs and symptoms of ADD, such as lack of attention, poor concentration, and difficulty doing more than one task at a time. They tried Ritalin and dextroamphetamine (both stimulants), and found that difficulties with attention and cognition improved.

Natelson: Two years ago, I presented data on a five-site trial using short-acting dexamphetamine (Psychosomatics 2003). Overall the trial was negative, but the results from three of the centers seemed to show significant improvement. Having done the trial, what do I do in my practice? I use Ritalin and other controlled stimulants secondarily (amphetamines are schedule II drugs). First, I try Provigil because it is only a schedule IV drug. In my experience, about one-quarter of the patients report a real improvement, one-half experience intolerable side effects (fibromyalgia and chronic fatigue syndrome patients tend to be sensitive to medications to start with), and the remaining quarter reports that the drug doesn't do anything. So I believe that there is a role for Provigil, but I say that in the face of a negative double-blind study with dextroamphetamine.

Bateman: This is a complicated question because there are so many sub-sets of patients. There is an array of responses to these medications in my fatigue clinic patients. On one hand, some can't tolerate Adderall, and at the other end, it becomes the drug that gets them back to work. It's a trial-and-error procedure with each individual. Provigil is easier to prescribe, but I find that it causes additional sleep disruption in my patients who already have disturbed sleep patterns. For these patients, I use Adderall and have found that it can aid with the pain as well. It is not normally used to treat pain, but it does increase the neurotransmitter norepinephrine, and my patients report that their pain decreases on Adderall. I seldom see any abuse patterns with stimulants. Also, the more a patient looks like a classic case of acute flu onset, the less likely it is that they will be able to tolerate Adderall. I prefer Adderall over Ritalin but use both of them in my practice. I start with the lowest dose and work up slowly to a dosage between 5 mg and 20 mg three times a day.

Question: I used to treat my patients with hormone replacement therapy (HRT), but now we are discouraged from using it. What is your experience with using HRT in the older women and even estrogen in younger women?

Klimas: It seems we have this gigantic elephant in the room that we are pretending is not here: it's called female hormones! They are so incredibly important. Didn't we all learn our lesson over a year ago when our patients suddenly stopped using their HRT based on reports in their newspapers? Women went into acute menopausal symptoms and my clinic was full of hot-flashing women for months! There is a middle-ground here and I decided to evaluate each patient, case by case. In many cases, when I put patients back on their hormones, it improved the quality of their lives.

Peterson: I did the same—90 percent of my patients are back on their hormones.

Question: What about checking testosterone and supplementing this hormone? Are there any data to show that it helps?

Lapp: We talk about HRT for women, but tend to neglect it for men. When new patients arrive at my clinic, I test their testosterone, especially if they have a low sex drive. Frequently, it is low or low-normal, but treatment rarely provides significant improvement. I had hoped that it would reduce fatigue, but it may help with osteoporosis. It must be used cautiously, because we do not want to trigger other medical conditions.

Question: Has anyone followed patients over time to determine if exercise tolerance gets worse over the years? Also, can the VO2max parameter be used objectively to depict a person's maximum workload?

Lapp: The VO2max is the maximum volume of oxygen consumed per minute per kilogram of body weight. It is considered the best method for measuring a person's physical ability to do work. Once measured, a person can be predicted to function comfortably during the day at 50-60 percent of their VO2max. If a person has a VO2max of 35 ml/min/kg, they can do a little bit more than desk work. The values are comparative standards, and when it comes to the sticky issues of disability, it would be helpful to be able to document how a patient's function has declined (or improved) over time.

Peterson: We have performed many sequential treadmill tests to measure the VO2max of the patients in the Ampligen trial. Often, the VO2max will drop before their functional assessment questionnaire shows any sign of decline. It's a sensitive indicator of how a patient is doing.

Natelson: The YAMAX pedometer (worn on the hip) can fairly accurately assess patient function and progress. The cheapest pedometer costs $3-4 at Wal-Mart. The Cadillac version costs $27, which allows patients to input their stride length to tell them how many miles they have walked or how many calories they have burned. These tiny devices can be useful to help patients very slowly increase their activity level without causing a flare-up.

Question: What percent of your patients get better with treatment?

Lapp: Roughly 80 percent of the patients that we treat with our stepwise approach see improvements (i.e., education, pacing activities, minimizing muscle strain, and symptomatic therapies for fatigue, headache, pain, etc.) If we make sure that we take care of the disturbed sleep, pain, hormonal problems, allergies, and other symptoms, a majority of patients do improve. The next step is to determine the cause of the disorder so that we can get to the root of it with more effective therapies.

Klimas: Our treatment starts most like anyone else's on the panel: it starts with sleep. Get sleep as good as you can get it, and then move on to mood—if it is a factor. If it is not a factor, then move on down through the list of other symptoms as best as you can.

Peterson: This is not a gutless panel. We are willing to treat our patients, but precautionary measurements must be taken. For example, I have not found that Ritalin affects the immune system at all, but I do check my patients before and after prescribing this drug. I am also willing to use a drug that will get my patients better. An example might be the use of Xyrem, which is very useful for the sleep disorder and is now available by prescription from one laboratory. Admittedly, it would be difficult for one practitioner to prescribe Xyrem (a derivative of GHB) for just one patient, but I have set up a relationship with the central distributing lab, so that I can get it for my patients with extreme sleep disorders. Much to my amazement, they do get relief from pain and it works to regulate sleep.

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