David S. Bell, MD, is one of the world’s leading experts on ME/CFS, and is a pioneer in its diagnosis and treatment. Dr. Bell has taught at Harvard Medical School, and was a staff member of Cambridge Hospital. He currently runs a private family practice in Lyndonville, NY, where he sees a limited number of ME/CFS patients and maintains a special interest in children with the illness.
The Art of Medication for CFS
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 ME/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 to objectively analyze your symptoms. On the plus side, it can provide improved symptom control and thus improve the ME/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 ME/CFS vary on a day-to-day basis, and the symptomatic treatment should vary accordingly. For those patients with a steady, every-day-is-the-same symptom 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 ME/CFS will have a different amount and kind of pain. It can be 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 ME/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 should avoid benzodiazepines and sedatives.
Benzodiazepines are great medications, but, like narcotics, can be addictive. The best way to use them in ME/CFS is “as needed” and not on a regular basis. There are days when clonazepam (Klonopin™) will increase activity slightly, and there are 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 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. It’s not a cure, but the 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 judgment and a lot of responsibility. It should not be undertaken casually, and is certainly not for everyone.
Chronic Pain Control
Of the difficult but treatable symptoms of ME/CFS, chronic pain is rarely treated adequately. Headaches, lymph node tenderness, muscle pain (fibromyalgia) and joint pain cause considerable long term discomfort – sometimes mild, sometimes severe. There may be fluctuations in the severity of pain. If pain remains one of your most important symptoms of ME/CFS, be sure to address it specifically.
There are some general principles of pain management that should be understood by the patient:
• Always use the least amount of pain medication. These drugs have side effects and may cause intolerance, and do nothing to cure the underlying cause. Don’t use them if they are not necessary.
• Do not treat general malaise with pain medication. Sometimes, you may feel rotten but the pain is not that bad. Using pain medication is unlikely to be of help.
• Communicate the pain clearly to your physician. There are many symptoms to address in ME/CFS, and if I do not know that pain is the worst symptom, I may not attempt to address it. That is, if pain is one symptom listed among twenty, I will not pay special attention to it.
• Be patient and observe patterns. If the pain is mild and tolerable for two months then bad for one week, do not go to the “big guns” right away. If the pain eases off after a week, you will not know if it is the medication or just the fluctuations of the illness. Once you understand the pattern, it may be reasonable to have a strong pain medication on hand for the bad episodes, then stop it when possible.
• Assess the response to one class of medications well before moving to the next class. Many persons do not use ibuprofen correctly and thus reject it, thinking it doesn’t help.
• Do not jump to stronger pain medications early in the morning if the pain and stiffness usually ease off after an hour. It will take the medications that long to work, and then you are left with the heaviness of pain medications for the next few hours without needing it. You can approach it by taking a longer acting medication at bedtime, or by stretching or showering in the morning.
Medications For Pain By Class:
1) Non-steroidal anti-inflammatory drugs (NSAIDs). This class is the standard pain relievers, many of them available over the counter. If the response is not enough, make sure you are using them effectively and at the right doses. For example, ibuprofen may be effective taken three times daily to prevent severe pain, but may appear not to work if used only at crisis times. All NSAIDs can cause upset stomach, and even ulcers.
2) Acetaminophen (Tylenol™ and others). This medication has no effect on inflammation, but can be useful for headache and muscle-joint pain. It is a reasonable first attempt. It can cause liver problems if used in very high doses and should never be taken excessively. If the regular dosage does not help, either add a NSAID or move to another medication. Do not push the dose.
3) New NSAIDs. For reasons I do not understand, sometimes other NSAIDs work better than ibuprofen, and can be taken regularly and less frequently during the day. It is reasonable to attempt others in this class, usually by prescription, before going to stronger medication. These would include Diclofenac (Voltaren™) at 50mgs three times a day, or the long-acting Voltaren™ XL at 100mgs once daily, or Sulindac (Clinoril™) at 100 to 200mgs twice daily. Do not exceed 400mgs daily. Naprosyn is another. Arthrotec™ is a brand that combines diclofenac with the drug misoprostal to protect the stomach (50mgs/200mgs up to four times daily). Do not take if pregnant or even if pregnancy is likely.
4) Tricyclics. These drugs are the old fashioned antidepressants and improve pain, but must be taken regularly to be effective. They should be used to prevent pain, and never be taken just when the pain is bad. This is one type of medication that must be taken regularly, good days and bad. ME/CFS patients are usually sensitive to them, and lower starting doses should be used.
5) Tramadol (Ultram™ – 50 to 100mgs three times daily). I like this medication partly because the name sounds like Kurt Vonnegut designed it. It should be used with caution in conjunction with Prozac™ and tricyclics. It is a cousin of the NSAIDs and has some effect on the serotonin and norepinephrine systems, as well as being a very weak opiate. While it is unlikely to cause dependence, some say it is unlikely to be of value. But it is worth a try.
6) Baclofen™. This is a nifty drug – it’s cheap, and when it works, it’s great. Unfortunately, it does not work very often. It is best when the muscle pain is of a cramping or spasm quality, which is why it is used in multiple sclerosis. It is related to the benzodiazepines such as clonazepam or alprazolam and should be used cautiously with these. Some sedation is likely, and the dose should not exceed 10mgs three times daily.
7) Seizure medications. These must be used with caution, as the side effects can be significant. But when they work, they are great. These are not casual medications.
Neurontin (Gabapentin™ 900 to 1800mgs daily). This medication was developed for seizure disorders and may cause dizziness or increase fatigue. The mechanism of pain relief is uncertain. Significant side effects are possible and it should be reviewed carefully before use.
Carbamazepine (Tegretol™ 100mgs twice daily to a maximum of 1200mgs a day. Tegretol™ XR 100 mgs twice a day.) This seizure medication can cause excitation, bone marrow problems and allergic reactions, and should not be used with erythromycin, Prozac and other drugs. It is a cousin of the tricyclics and sometimes gives good pain relief.
8) Narcotics. While these drugs always have the potential for addiction, it is said that addiction rarely occurs when these drugs are used to treat severe pain. Intermittent use is best if possible. Doctors are usually reluctant to use narcotics because of the risk of addiction; you don’t need any more problems than you already have. Propoxyphene (Darvon™) is my least favorite drug in this class, because it may have a high addiction potential yet offers wimpy pain relief.
A Note in Conclusion
When people hear about the side effects of medications, they frequently become afraid and unwilling to try medications. If you were to see the side effect profile of acetaminophen (Tylenol™) you would probably never take it, because it includes death. When 280 million people use a drug, side effects are bound to occur. Keep in mind that if you saw the side effects and dangers of taking a shower (e.g., slipping in the bathtub) people would not bathe. That, however, also has its side effects (loss of friends, physicians, etc). Use common sense. Any medication that does something will have side effects. Some of the safest medications are only safe because they do nothing at all. Consider medications as you would consider driving a car. They are both inherently dangerous, but are helpful if used properly.
“The Art of Medication for CFS” and “Chronic Pain Control” first appeared in the Lyndonville News, January 2000, Volume 2, Issue 1, and February 2000, Volume 2, Supplement 1. © Bell, Pollard, Robinson 1999. Reprinted with permission. To sign up for the Lyndonville News, which is available free of charge via e-mail, go to Dr. Bell’s website at http://www.davidsbell.com
Note: This information has not been evaluated by the FDA. It is generic and for general informational purposes only, and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. ME/CFS/FM is an extremely complex illness, and advice in a newsletter may not be appropriate for a specific individual. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.