Dr. Campbell* directs the nonprofit CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org) and popular online self-help discussion group courses. You can register now for the fall Introductory Course, which begins September 12.
Do you have just fibromyalgia or Chronic Fatigue Syndrome, or is there something more going on?
If you are like the majority of people with FM or CFS, you live with more than one medical problem.
Research suggests that about two thirds of people diagnosed with Chronic Fatigue Syndrome also meet the diagnostic criteria for fibromyalgia, and vice-versa.
Often the diagnosis made first depends on which medical specialist is consulted. A primary care physician might spot CFS, while a rheumatologist may be more likely to diagnose fibromyalgia.
In addition, people with CFS and fibromyalgia often experience one or more additional medical problems, which are frequently called overlapping or related conditions.
• Overlapping medical conditions are ones that share symptoms and diagnostic criteria in common with CFS and fibromyalgia.
• Related conditions are medical problems that often occur along with CFS and FM.
Having multiple medical conditions complicates life and increases suffering, but successful treatment of other problems may ease the overall symptom level of people with CFS and fibromyalgia. Sometimes, a patient is eventually understood to have one of the other conditions rather than CFS or fibromyalgia.
Here are eight of the more common medical issues faced by people who have Chronic Fatigue Syndrome and fibromyalgia, along with common treatments for them.
Irritable Bowel Syndrome (IBS)
A majority of CFS and fibromyalgia patients suffer from irritable bowel syndrome (IBS), a digestive-system disorder characterized by abdominal pain, cramping and bloating, constipation, diarrhea or alternating constipation and diarrhea.
IBS often occurs together with CFS and fibromyalgia, because all three involve problems in the autonomic nervous system. IBS is a chronic condition with intermittent symptoms. Symptoms can often be managed with lifestyle changes that may include the reduction of stress and elimination of foods that aggravate symptoms.
Sometimes medications are used. These include stool softeners or laxatives for constipation, anti-diarrheal agents like loperamide, low-dose antidepressants used as pain relievers, and sometimes antibiotics to treat bacterial overgrowth.
Multiple Chemical Sensitivity
A majority of fibromyalgia and CFS patients experience allergic reactions to various substances. Sensitivities to mold, dust mites and grasses are common. Patients also react to perfumes, scented products, cigarette smoke, household chemicals, car exhaust and diesel fumes, glues, inks and dyes.
(Because many patients are chemically sensitive, most CFS and FM support groups ask people to come to meetings “fragrance free.”)
The range of reactions varies greatly among patients, from mild annoyance to serious threat. Symptoms include headaches, dizziness, faintness, nausea, breathing difficulties, and irritation of the eyes, mouth and throat.
Those with more severe reactions may be housebound. The most useful coping strategy is avoidance, which includes eliminating offending substances from the home and limiting exposure to them while outside the house.
Myofascial Pain Syndrome (MPS)
Many fibromyalgia patients also experience Myofascial Pain Syndrome (MPS), a pain condition localized in trigger points (specific locations in muscles or fascia), often in the neck or shoulders.
MPS is usually treated with medication, massage, rest, heat and cold and the injection of local anesthetics into the trigger points. The latter, often called “spray and stretch,” is often accompanied by the stretching of the muscle involved. [See video.]
Since myofascial pain may be aggravated by stress, repetitive motion and poor body mechanics, it can also be treated with lifestyle adjustments, such as relaxation, avoidance of repetitive motion and improved body mechanics.
CFS and fibromyalgia patients frequently experience depression, which can be of two types – situational and biochemical.
Situational or reactive depression is a response to a particular set of circumstances, in this case the disruptions and uncertainties created by long-term illness.
Situational depression lends itself to self-management strategies such as those discussed in elsewhere on this site (www.cfidsselfhelp.org). Some patients are also helped by professional counseling. One effective approach is cognitive therapy.
Biochemical depression. Patients may also experience a second type of depression. Prolonged stress can alter the biochemistry in the body, creating biochemical depression. Self-management strategies may also be useful for this type of depression, but treatment normally includes medication as well.
If you are deeply depressed about your illness; for example, if you have thought seriously about killing yourself, get professional help. For resources, see the article “Killing Me Softly: FM/CFS & Suicide.”
Food Issues: Yeast Infections, Celiac Disease & Lactose Intolerance
About one third of CFS and fibromyalgia patients are sensitive to foods and experience gastrointestinal symptoms (heartburn, gas, nausea, diarrhea and constipation), as well as other symptoms, such as headaches, muscle pain, changes in pulse and fatigue.
While symptoms may be due in part to CFS or FM, they may also be caused by:
• Yeast infections, like Candida (Candida albicans overgrowth);
• Celiac disease, which causes a strong allergic reaction to wheat and other grains;
• Or lactose intolerance, which is the inability to digest the sugar in milk.
There are two major treatments for food allergies: avoidance, and the rotation diet.
• If foods produce strong reactions, such as diarrhea, nausea, headaches or hives, the normal treatment is to eliminate them from the diet entirely. Often, the elimination of just a few foods can improve symptoms dramatically.
• Alternatively, a food may be tolerated if it is eaten only occasionally (the rotation diet).
Apnea, meaning absence of breathing, occurs when a person’s airway becomes blocked during sleep. An episode can last from a few seconds to a few minutes. The person then awakens, gasps for air and falls asleep again. This can occur many times a night, leaving the person exhausted in the morning.
Sleep apnea intensifies the nonrestorative sleep usually experienced by people with CFS and fibromyalgia.
Apnea is a treatable condition. A common remedy is use of a CPAP (continuous positive airway pressure) machine to keep the airway open. The patient wears a mask through which a compressor delivers a continuous stream of air, keeping the airway open.
Other treatments are also used for this condition. If you suspect you have this problem, consult a sleep specialist.
Restless Legs Syndrome (RLS)
Restless legs syndrome involves “twitchy limbs,” strong unpleasant sensations in the leg muscles that create an urge to move. The problem is often at its worst at night, making good sleep difficult.
Self-management techniques that may help include reducing consumption of caffeine and other stimulants, establishing a regular sleep pattern, doing exercise that involves the legs, distracting yourself through immersion in absorbing activities, using hot or cold baths or showers, and taking supplements to counteract deficiencies in iron, folate and magnesium.
Several categories of medications may also help, including sedatives, drugs affecting dopamine, pain relievers and anticonvulsants. A drug that is often prescribed is Requip.
Neurally Mediated Hypotension (NMH)
NMH is a condition of sudden decrease in blood pressure that causes light-headedness, nausea and sometimes fainting. It is very common in people with CFS. It occurs when the usual mechanisms for maintaining blood pressure fail.
Normally, when a person stands, blood pressure is increased to keep blood flowing to the head. In people with NMH, this process is reversed and blood pressure falls. Dizziness or fainting can also be caused by the release of adrenaline.
Treatments include increasing blood volume through the consumption of more fluids and salt, wearing support hose, avoiding long periods of standing, and using medications like Florinef.
(Note: Neurally Mediated Hypotension is one type of orthostatic intolerance. Another form is postural orthostatic tachycardia syndrome (POTS) , which causes a rapid increase in heart rate when a patient stands up.)
Other Related Conditions
Besides the conditions just described, other medical problems often occur together with Chronic Fatigue Syndrome and fibromyalgia. Among people who take our self-help course, the following conditions, listed alphabetically, are common in addition to those mentioned earlier:
• Back and spinal problems,
• GERD (gastroesophageal reflux disease),
• And thyroid problems.
The twin bottom lines:
1. For people with CFS and fibromyalgia, multiple medical problems are the rule, not the exception.
2. By treating other conditions, you may be able to moderate your overall symptom level.
For Further Information
Buchwald, Dedra. “Alphabet Soup.” CFIDS Chronicle 2005-2006: 44-47. (Part of special issue on the science and research of CFS.)
CFIDS Association of America. “Orthostatic Intolerance and CFIDS Fact Sheet.” Posted at www.cfids.org .
Matallana, Lynne. The Complete Idiot’s Guide to Fibromyalgia. New York: Alpha Books, 2005. (See chapters 1 and 13.)
* Bruce Campbell 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. He is also co-sponsor with Dr. Charles Lapp of Treating CFS & FM (www.treatcfsfm.org) – a website that guides patients step-by-step through creation of a personal treatment plan. This article is reproduced with kind permission from www.cfidsselfhelp.org.
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.