Dr. Campbell* directs the nonprofit CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org) and online self-help discussion group courses, offering an exchange of practical advice such as the following.
Medications can play a useful role in managing CFS or fibromyalgia. Even though they won’t cure either condition, they can help you to control symptoms and reduce suffering. While drugs often produce benefits, they can also create problems. This article discusses five common problems with medications and what to do about them.
PROBLEMS WITH MEDICATIONS
1. No Effect
Sometimes you start taking a medication, can’t see any change in your symptoms and conclude it is not working.
• You may be right! There is no drug that is consistently effective for treating CFS and FM, so finding one that helps you is likely to be a process of trial and error. You may have to try several before finding one that works.
• On the other hand, you may need to give the drug more time. Some drugs take up to several weeks to produce an effect.
• It’s also possible that a drug could be helpful at a higher dosage level. Because most people with CFS and FM are very sensitive to medications, your doctor is likely to start you on a low dosage, to see if it’s effective and also whether it produces side effects.
If you can tolerate the drug at an initial level but don’t experience benefits, you may benefit from a higher dosage.
2. Side Effects
The most common negative result of taking a medication, side effects are unwanted consequences of using a drug. They include fatigue, mental confusion, memory problems, sleepiness, sleeplessness, nausea, diarrhea, constipation and dizziness.
If you experience side effects with a medication, discuss them with your doctor. (See section on partnering with your doctor, below.)
• Accepting the side effects (you decide the benefits of the drug outweigh the side effects),
• Adjusting how you take the medication (for example, with food rather than on an empty stomach),
• Changing dosage level or switching to a different medication (there is often more than one drug used to treat a condition or symptom).
Several of the side effects mentioned above are also symptoms of CFS and FM. In developing your symptom management plan, consider the possibility that some of your fatigue, mental confusion, sleep problems or digestive difficulties may be caused by a medication.
3. Allergic Reactions and Drug Interactions
Drugs can trigger allergic reactions from the body, such as a rash, hives, swelling, wheezing or difficult breathing. If this occurs, stop taking the medication and contact your doctor.
If you take more than one medication, you may experience problems caused by how the drugs interact with one another. Ways to combat this problem include:
• Switching to a new drug,
• Reducing the number of medications you take,
• And telling your doctor about all your drugs, vitamins and supplements, so that possible interactions can be taken into account.
4. Remembering to Take Your Medications
If you have problems remembering to take your medications, consider using a seven-day pillbox or pill organizer, which has a compartment for each day of the week.(1)
• If you have morning and evening pills, you can use two pillboxes.
• Fill the boxes on the same day once a week. This practice reduces the chances you will take a double dose of your medications. If it’s Wednesday morning and there are pills in the Wednesday slot, you take them. If the compartment is empty, it means you have already taken them.
A second strategy is to incorporate reminders into your life. For example:
• You might put your pills in the bathroom, where you’ll see them when you get up in the morning and as you’re preparing for bed at night.
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• Or you could use a timer or alarm on your watch to tell you it’s time to take a medication.
5. Drug Costs
A final problem with taking medications is cost. You may be able to lower your drug costs by:
• Using a generic medication rather than a brand name drug
• Shopping around (prices vary from one pharmacy to another)
• Buying your drugs by mail (AARP and other organizations offer such services)
• Discussing your medications with your doctor to see whether one or more might be dropped or one medication used in place of two.
OTHER IDEAS FOR MEDICATION MANAGEMENT
Use Lifestyle Change to Control Symptoms
The symptoms of CFS and FM have many causes, including overexertion, deconditioning, stress, worry and depression. These other causes can be addressed by changing how you lead your life.
• For example, pacing is widely recommended as an antidote to overexertion and thereby an effective treatment for fatigue, pain, sleep problems and cognitive difficulties (brain fog). Pacing may include a variety of strategies, for example adjusting your activity level, having short activity periods and taking rest breaks. [See “Pacing: What It Is and How to Do It”]
• Exercise can reduce fatigue and pain. [See “Exercise: CFS vs. Fibromyalgia”]
• Stress reduction affects muscle tension and worry. [See “Stress Management”]
Changing the way you live has advantages over medications. Lifestyle change has no side effects, it’s cheap, and it is highly likely to help. Well-known CFS/FM physician Dr. Charles Lapp has written that CFS and FM are “best managed with adaptation and lifestyle changes.” Comparing this approach to other options, he adds, “There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM.”
[For much more on all aspects of lifestyle change for managing ME/CFS & FM, search the CFIDS & Fibromyalgia Self Help Library or see Dr. Campbell’s account of his own “Recovery from Chronic Fatigue Syndrome: One Person’s Story.”]
Partner with Your Doctor
Finding medications that work for you with a tolerable level of side effects is an effort. It is usually a process of trial and error, one you may have to go through more than once if a medication that helps at one point later becomes ineffective or produces serious side effects.
Having a good working relationship with your doctor helps. Your responsibilities include telling the doctor about other medications you are taking, reporting on your drug allergies and mentioning previous medications you have tried to treat your condition, and reporting back to your doctor on your experience with a medication.
If you are offered a medication, ask your doctor:
• What is the purpose of the medication?
• How and when do should I take the medication, and for how long?
• When will the effects start?
• What are the most common side effects and what should I do about them?
• What are my other options, both drug and lifestyle change?
• When and how should I report to you about my experience with the drug?
1. For those who feel they may benefit from more help with medication reminders and monitoring, various electronic systems are now available. See for example the Maya MedMinder System, available through the ProHealth store.
* Dr. Bruce Campbell, PhD, is a leading ME/CFS & FM educator, and is himself an ME/CFS patient who slowly achieved improved health more than a decade ago by researching and practicing an ongoing regimen of significant lifestyle changes. This article is reproduced with kind permission from his website (www.cfidsselfhelp.org), which offers a searchable library with scores of free articles on coping with ME/CFS and fibromyalgia, as well as low-cost online self help courses in moderated discussion group format.
Note: This information has not been evaluated by the FDA. It is general and is not intended to substitute for medical or other professional advice. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.