Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

by David S. Bell, M.D.

The Massachusetts CFIDS/ME & FM Association Spring 2000 UPDATE

One of the difficult but treatable symptoms of Chronic Fatigue Syndrome (CFS), chronic pain is rarely treated adequately. Headaches, lymph node tenderness, muscle pain (fibromyalgia (FM)) 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 CFS/FM, be sure to address it specifically. There are several gen­eral principles of pain management that should be understood by the patient:

  1. 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.
  2. 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.
  3. Communicate the pain clearly to your physi­cian. There are many symptoms to address in 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.
  4. Be patient and observe patterns. (Keep a symptom journal.) 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, and then stop it when possible.
  5. Assess the response to one class of medications thoroughly before moving to the next class. Many individuals do not use ibuprofen correct­ly and thus reject it, thinking it doesn't help.
  6. 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.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.