Step 3: Create a Symptom Management Plan
By Bruce Campbell
The lack of a cure for ME/CFS and fibromyalgia does not mean that there are no treatments. On the contrary, there are many ways to alleviate the symptoms of the two illnesses.
While treatments don't heal either condition, they can help you feel better and give you greater control by reducing your pain and discomfort, and by smoothing out the up and downs of your illness.
The third step in your self-management plan is to create a strategy for managing your symptoms.
This step is often a major challenge, because ME/CFS and FM have many symptoms, because symptoms and severities can change over time, and because no medication has proven widely effective for either condition. I suggest you keep three general ideas in mind as you develop the details of your symptom management plan.
1) Use Multiple Strategies: Because ME/CFS and fibromyalgia generate multiple symptoms and because a given symptom often has more than one cause, it is helpful to use multiple coping strategies. These strategies often include both medications and self-help approaches. Some strategies are directed at a single symptom, while others affect multiple symptoms.
2) Experiment: There is no standard treatment for either ME/CFS or fibromyalgia. That means that no treatment is widely and predictably effective in controlling the symptoms of either condition. Because each person's condition is different, symptom control is usually achieved through experimentation.
Some approaches work better at some times than at others or for some people better than for others. If you want to use medications as part of your treatment plan, a sensible approach is to find a sympathetic physician willing to work with you in a process of trial and error to find the drugs that help in your individual situation.
3) Make Lifestyle Adjustments: Your success in controlling symptoms will probably depend as much or more on your efforts and willingness to adapt as on anything a doctor does for you. Perhaps the most important key to minimizing symptoms is to adjust activity level to the limits imposed by illness, which we call living within the energy envelope.
Rather than fighting your body in repeated cycle of push and crash, you seek to understand your body's limits and to live within them. Most of the patients we have known who have shown marked improvement or who have recovered, have relied primarily or exclusively on changing their daily habits and routines.
In the words of ME/CFS and FM physician Dr. Charles Lapp, "There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of ME/CFS or FM."
With that background, let's look at treatment options for three of the most common and troublesome symptoms of ME/CFS and fibromyalgia: fatigue, pain and poor sleep.
Fighting Fatigue
The deep exhaustion characteristic of ME/CFS and often found in fibromyalgia can have many causes. For this reason, an effective approach to fighting fatigue involves multiple strategies.
One cause of fatigue is the illness itself, which imposes limits on activity. As indicated above, the most powerful response is to adjust activity level to fit within the "energy envelope." This adjustment requires both practical adaptations and psychological changes.
The former involves gradually developing a detailed understanding of your new limits and then adjusting your daily life to honor those limits. The psychological adjustment involves accepting that life has changed and learning to see your life in a new way.
This acceptance is not resignation, but rather an acknowledgment of the need to lead a different kind of life. (See step 4 and step 5 for more on these two types of adjustments.)
Two other causes of fatigue are pain and poor sleep. Pain is inherently tiring and also produces muscle tension, which is fatiguing. Nonrestorative sleep leaves you feeling as tired in the morning as you were when you went to bed. Addressing pain and sleep can produce a double benefit, also helping to reduce fatigue.
Two further causes of fatigue are deconditioning and stress. A lower activity level leads to deconditioning; ongoing symptoms, limitations and uncertainty intensify stress. In response, a carefully measured activity and exercise program can reduce deconditioning. Stress management strategies, as described in step 6, can help reduce fatigue.
Deconditioning and stress also exacerbate pain and poor sleep, so addressing these causes of fatigue can also alleviate the two other symptoms. Exercise can reduce stiffness and may improve sleep. Also, because stress is associated with muscle tension and poor sleep, stress management can reduce pain and aid sleep.
Strategies for Pain
As with fatigue, pain can have a variety of causes. It is best managed with a variety of strategies that often involve both medications and self-management techniques.
For many people with ME/CFS and fibromyalgia, pain relief through medications may be modest, achieved through the use of non-prescription products such as aspirin and other over-the-counter pain relievers. Others find help through prescription medications such as Ultram (Tramadol) and in some cases narcotics.
Prescription drugs that improve sleep can have a beneficial effect on pain as well. Anti-depressants such as Elavil (amitriptyline), Prozac and Paxil are often tried. The FDA (US government body regulating food and drugs) has approved three drugs for the treatment of fibromyalgia: Lyrica (pregabalin), Cymbalta (duloxetine hydrochloride) and Savella (milnacipran HCl).
Some patients experience neuropathic or nerve pain burning or electric shock sensations that are felt especially in the hands and feet.
This type of pain is often treated with anti-seizure medications such as Neurontin. Sometimes a medication will be effective for a time, and then lose effectiveness. Usually, patients are started on dosages that are a small fraction of normal dosage levels.
You might also consider using some of the following self-management strategies for treating pain.
1) Pacing: A frequent cause of pain is overdoing or having an activity level that is beyond a person's limits. Keeping your activity level within your limits offers a way to bring stability and control. For more, see the articles in the pacing archive.
2) Relaxation: Pain is often accompanied by muscle tension and anxiety. Relaxation offers an antidote to both tension and stress. Relaxing activities may include exercise, mindful breathing, baths and hot tubs, massage, rest and listening to tapes. You might also consider practicing a formal relaxation or meditation procedure on a regular basis. See the articles in the stress management archive.
3) Problem Solving: You can gain some control over your pain by identifying the situations that trigger pain and then taking steps to change the situations. For example, if doing household chores creates pain, consider spreading the tasks out over several days, doing them on one day but taking rest breaks, or getting help from others.
4) Emotions: People who are depressed have a lower threshold for pain. Self-management strategies, sometimes in combination with medications, can help manage the emotional aspects of chronic disease.
5) Mental Adjustments: Negative thoughts, such as "I'll never get better" or "It's hopeless," can have a dramatic effect on mood and, in turn, on the perception of pain. Developing realistic expectations and taming excessively negative thoughts can help.
6) Exercise and Body Mechanics: Exercise is one of the most-commonly prescribed treatments for people with fibromyalgia and may also be helpful for ME/CFS patients. Fibromyalgia patients especially can reduce their pain by experimenting with how they hold their body and how they move.
7) Pleasurable Thoughts and Activities: Immersing yourself in activities that bring pleasure provides a distraction from pain. Examples include reading a book, watching a movie, listening to or playing music, and spending time in nature.
8) Heat, Cold & Massage: Heat, such as from a heating pad or bath, cold and massage offer non-drug treatments for temporary relief of pain.
9) Improving Sleep: Poor sleep intensifies pain, because when we feel tired pain is amplified. Thus, improving sleep using strategies such as those in the next section will also reduce pain.
Solutions for Sleep
Treating sleep is especially challenging because there is no single medication that has proven helpful in solving sleep problems for people with ME/CFS and fibromyalgia. Also, many patients develop drug tolerance, so that a medication becomes less effective over time. For both these reasons, sleep problems can benefit from a flexible, experimental approach that utilizes a variety of strategies.
Medications commonly used to treat sleep problems include over the counter products like melatonin and valerian, antihistamines such as Benadryl, clonazepam (Klonopin), tricyclic antidepressants such as amitriptyline (Elavil), benzodiazepines such as Halcion, and the hypnotic drug Ambien. Often a combination of two drugs is prescribed, one to initiate sleep and another to maintain sleep.
You may be able to improve your sleep by changing your sleep environment or your sleep habits, a category usually called "sleep hygiene." Here are five ideas in that area.
1. Have a Comfortable Environment: Provide yourself with an environment conducive to good sleep by using a good mattress, and by exercising control over light, noise and temperature. (Note: noise includes snoring by your sleep partner.)
2. Establish a Routine: Go through the same routine each night and have a consistent bedtime. Prepare for sleep by gradually reducing your activity level in the several hours before bedtime and by having "going-to-bed" rituals you do consistently at the same time each night.
3. Get Up at the Same Time: Setting an alarm so that you get up at the same time each day can help you adjust gradually back to more normal hours. Usually, you don't need to compensate by changing your bed time to an earlier hour; your body will adjust itself.
4. Limit Daytime Napping: Often, daytime napping interferes with night time sleep. If you nap during and day and find that you have trouble falling asleep, or your sleep is worse than usual when you nap, you might consider sleeping only at night.
5. Use Relaxation or Distraction to Fall Asleep: It may be easier to fall asleep if you listen to quiet music or distract yourself in some other way, such as by counting or watching your breath. Relaxation techniques can help you fall asleep.
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