The Lyndonville Journal:

The Art of Medication as Needed in CFS

David S. Bell, MD, FAAP

Published in Lyndonville News, January 2000

This is going to be tricky, please bear with me. It is a subject that I have never attempted before, but I think is important. It is also something that very few physicians would agree with, so read with caution. It is the ability of the CFS patient to understand his or her symptoms, and modify the medication regime to treat the symptoms on a day-to-day basis. The reason that these suggestions may not be for you is that it requires a thorough understanding of medications and what they can and cannot do. Furthermore it is complicated and requires a good ability of objectively analyze your symptoms. On the plus side it can provide improved symptom control and thus improve the CFS patient's ability to take control of the illness, at least to a certain degree. This will aid in improved coping, reduction of uncertainty and fear, and thus improve activity. It is a subject that most physicians do not touch because it places so great a burden on the patient.

Here is the basic premise: many symptoms of CFS vary on a day-to-day basis, and the symptomatic treatment should vary accordingly. For those patients with steady, every-day-is-the-same course, these suggestions are irrelevant. But some, usually those with a milder course, will have days of greater or less activity, greater or less pain, greater or less sleep problem or sense of being frazzled. The first and most obvious example is pain. Every patient with CFS will have a different amount and kind of pain. It can be the burning pain, or muscle spasms; it can be the tender points of fibromyalgia or the deep bone pain. For some it is an annoyance, for some it is agony. It can be treated with medications, and usually the physician will prescribe something and it is taken every day.

But the pain is not the same every day. There may be days of narcotic quality pain, but taking the narcotic will worsen the exhaustion and the day is shot. The trick is to read the pain quality and treat it with the right drug for that day. This requires a thorough understanding of the medications and a willingness to be observant of the day-to-day changes. Some pain medications, such as the tricyclics and serotonin agents need to be taken continuously to be effective. They are exempt from day-to-day variation. Ibuprofen can be varied, but the patient must learn the maximum dose and not exceed it. Also beware of ulcers and abdominal pain. Codeine or a stronger narcotic can be used for bad pain, and avoided on better days. We take this for granted with pain management, but it can also be true with the other symptoms of CFS. Take fatigue for those with variations in the day-to-day expression of this symptom. Some days, coffee is helpful, some days it will make you worse. Learn to discriminate between the two different types of fatigue (heavy-like-a-log-fatigue, and frazzled fatigue) and use coffee judiciously, like a medication. It is the same with other stimulants, amantadine, Ritalin™, Cylert™, and others. If you are in a bad relapse, forget it; stimulants will usually not help at all and may make you feel worse. The sleep disorder usually parallels the type of fatigue. The worse courses have light, disrupted sleep and a frazzled type of fatigue. Avoid stimulants and use benzodiazepines or sedatives (antihistamines, Baclofen™, Flexeril™, and others) sparingly. The heavy-like-a-log-fatigue usually has better sleep and avoid benzodiazepines and sedatives. Benzodiazepines are great medications, but, like narcotics, can be addictive. The best way to use them in CFS is "as needed" and not on a regular basis. There are days when clonazepan (Klonopin™) will increase activity slightly, days when it puts you to sleep. Learn the difference between the two and your life becomes a little easier.

An extreme example of this day-to-day regimen is intravenous fluids. One patient I know uses IV saline for special times. Every once in a while she will want to go out for a dinner and a movie. She knows that if she has one liter of intravenous saline six hours before, she will be great for five or six hours, without a "payback" the next day. Fortunately her husband is a physician and is able to plug her into a bag and they have a wonderful evening. Its not a cure, but an occasional dinner and movie is great for the spirits.

A friend said to me recently, "I was having a Klonopin moment." But this regimen is complex and requires good judgement and a lot of responsibility. It should not be done casually and is certainly not for everyone.

Join us next month for a special February issue where Dr. Bell will give you his feelings and ideas on controlling chronic pain.

Return to the Lyndonville News Archive

Return to the CFS Page

Home	News	Forum	Contribute	Store	Articles	Links	Help
The Pediatric Network website and forum are run by Mary Robinson and Rebecca Moore. When you follow links on our site to Amazon.com and make purchases, a portion of the sales cost supports our work. Visit our store for shopping suggestions:  gifts for kids or parents, tools for adapting activities, medical and special education books, coping strategies, and more.

Disclaimer: The views in this website and forum are the feelings and opinions of the individual authors and do not necessarily reflect all of the current theories that are being explored and published. Ask your doctor or other health care provider about all medical information that you consider applying to your situation, including the information you read in our website and forum. We take no responsibility for the decisions you or your family members make about medical care. It is up to you to verify that the information you read is correct and applies to your unique situation.