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     Often, successful education goes a long way in helping the patient to reverse the fatigue/pain amplification reaction and the vicious cycles that often accompany it. The emotional relief that this clarifying education provides can help turn things around, sometimes greatly so. The new understanding can largely reduce, even eradicate, the fears, mystification, confusion, worry, frustration, and resentment that build when it is unclear “what is wrong.” Education is freeing.

     The next step is to create a list of the life situations or life thoughts that seem to create the most physical and/or emotional tension. The patient needs to identify those things or feelings going on in their lives that make them the most uncomfortable, un-relaxed, stressed out, tense. Sometimes, the number one “stressor” is the just mentioned confusion, mystification, fear, frustration, and resentment associated with having symptoms and not knowing “what’s wrong” and not receiving effective help in fully determining and understanding “what’s wrong.” Often there are other underlying stressors. Creating a list requires honesty, courage, and objectivity. Sometimes patients, by themselves, can figure out what belongs at the top of the list. Sometimes parents or friends need to help. Sometimes the help of an objective and skilled psychologist/counsellor is needed.

     Once these top stressors are identified, the next step is to determine how best to either eliminate, diminish, or better cope with these stressors, starting with the biggest culprit. Some ways of coping are unhealthy; other ways are much healthier.

     The next step is to break into and disassemble the various vicious cycles that tend to evolve during the development of a chronic fatigue/pain amplification disorder – as in the following examples.

     Exercise: When a person is chronically tired or chronically achy or both, they tend to not feel up to exercising. We rely on a certain amount of gently invigorating physical exercise to generate natural energizers and natural pain killers to help us through an ordinary day. It is a disadvantage to go through each day with suboptimal levels of natural energizers and natural pain killers. These low levels increase our fatigue and pain, thereby contributing to the vicious cycle. We can break into that vicious cycle by gradually getting more exercise, in moderation, in the best way our circumstances permit.

     Sleep: During good quality sleep, natural energizers and natural pain killers are generated to help us get through the next day. If we are not getting good quality sleep, we go through the next day with suboptimal levels of natural energizers and natural pain killers – which may already be low because of lack of invigorating exercise. This makes us even more tired and achy – thereby contributing to a vicious cycle.

     Furthermore, without adequate exercise, we are not as pleasantly tired and relaxed at bedtime; so, we do not sleep as well. And, without good quality sleep, we do not feel up to exercising the next day. This is how vicious cycles develop, which make the chronic fatigue/pain amplification even worse. By breaking into these vicious cycles, the chronic fatigue/pain amplification can be decreased in intensity. The way to break in is to develop a gently invigorating exercise program that avoids the extremes of no exercise and exercise that is too much, too soon. The other component of breaking into these vicious cycles is to work on sleep hygiene.

     Emotional stress can also accelerate these vicious cycles, in part by interfering with sleep. So, again, it is often important to identify and effectively address emotional issues.

     Nutrition: Good nutrition can also help to break into vicious cycles and restore balance.

     Successful treatment of a chronic fatigue/pain amplification disorder, therefore, requires a comprehensive approach – paying attention to all of the concepts mentioned above. In addition, there is sometimes a role for temporary use of various medications, such as gabapentin, Lyrica, anti-depressants, or sleep aids. These medications can provide temporary symptomatic relief, while the patient works on the underlying root causes of their physical and emotional tension. Such medications are simply options and are often not necessary.

     The good things about a “chronic fatigue/pain and sensory amplification disorder” are that it is completely reversible, causes no bodily harm while it is present, and makes you a better person afterwards (once you have recognized it for what it is and have successfully made the needed healthy changes). In that sense, it is a kind, wise, protective, caring set of physiological reactions, designed to help you.

     As stated earlier, it is important to realize that some people have human physiologies that are very sensitive, very reactive, and very “worrywart-ish,” while other people have human physiologies that are not very sensitive or very reactive. Sociopaths, for example, have quite insensitive and unreactive physiologies. That is why sociopaths can pass a lie detector test, even when they have just lied. There is a spectrum, regarding how sensitive, reactive, caring, and smart peoples’ human physiologies are. That is why one person, who is dealing with only an average or below average amount of tension, might develop a chronic fatigue/pain and sensory amplification disorder, while another person, who is dealing with extraordinarily great stress, does not develop a chronic fatigue/pain and sensory amplification disorder. It is people with particularly sensitive and reactive physiologies who are most likely to develop a chronic fatigue/pain and sensory amplification disorder. So, it is not so much the level of tension/stress that determines whether a chronic fatigue/pain and sensory amplification disorder develops; it is the level of physiologic sensitivity and reactivity that is the determining factor.

     It is also important to realize that adolescence is a particularly stressful time for virtually all adolescents. It is a difficult time of life for most people, including people who seem to have everything going for them (like high intelligence and lots of school success).

     If I were to describe the typical personality traits of the adolescents who develop protective physiologic reactions, here is how I would describe them: They are emotionally sensitive, very responsible kids. They care deeply about others. They take life seriously, including their obligations to be the best they can be. They put lots of pressure on themselves to perform well in school and to be liked by their peers. They worry about whether they are measuring up – not so much to the expectations of others, but to their own (usually very high) expectations of themselves. They drive themselves hard. They work hard and are high achievers. They worry very much about others and aim to please and care about pleasing. They are pretty hard on themselves – probably too hard on themselves. They often feel as though they are not adequately measuring up – and often carry this worry secretly and chronically. Lazy, insensitive, uncaring kids don’t develop a chronic fatigue/pain and sensory amplification disorder.

Musculo-Skeletal Pain Amplification Phenomenon (MSK-PAP)

     What follows is a hypothesis regarding pain amplification. A musculoskeletal pain amplification phenomenon (MSK-PAP) represents a protective physiologic reaction in which that part of the person’s physiology that is responsible for sensing, processing, interpreting, and reporting pain to our consciousness (in short, our “pain-reporting apparatus”) goes into a state of overdrive – all in an effort to protect us, to let us know that it is concerned about us.

     This pain-reporting apparatus consists, roughly, of our peripheral nerves, spinal cord, the “central pain processing center” within the brain, and the neurons (within the brain) that relay the central pain processing center’s ultimate message to our consciousness. In a pain amplification situation, most of the pain amplification is probably occurring within the central pain processing center. In a pain amplification situation, the central pain processing center becomes very active (hyped up), neurophysiologically – such that it sends very loud messages of pain to our consciousness. A person is at the mercy of what their “pain-reporting apparatus” ultimately reports to their consciousness. If that report/message is one of loud, screaming pain, then, that is what the person actually feels.

     Why is the central pain processing center amplifying its pain message? It is doing so in an effort to protect us. As explained earlier, this represents a protective physiologic reaction. Our human physiology is not being mean and trying to hurt us; it is trying to help us. It is important to “listen to what our body (our human physiology) is saying.”

     Patients, or their parents, are often skeptical or surprised that a chronic fatigue/musculoskeletal pain amplification phenomenon can cause such severe pain, or such severe fatigue (or both). They often think, “How can my child be having so much pain or so much fatigue (or both) without there being a worrisome disease process responsible?” My response to this question is as follows.

     If I were to line up all of the patients we see in our rheumatology clinic – all of those with rheumatoid arthritis, all with lupus, all with other rheumatic diseases, and all with a chronic fatigue/musculoskeletal pain amplification disorder – and line them up according to the severity of the pain or fatigue they are having, it is kids with a chronic fatigue/musculoskeletal pain amplification phenomenon who are having the most severe pain and the most profound fatigue. Kids with a chronic fatigue/musculoskeletal pain amplification disorder often have pain and fatigue that is far greater than the pain and fatigue experienced by kids with the worst cases of arthritis or lupus. Not all kids with a chronic fatigue/musculoskeletal pain amplification disorder have that much pain or fatigue, but some certainly do. Some can be severely disabled by their pain and fatigue. So, I am never surprised by how severe the pain, fatigue, and disability can sometimes be with a chronic fatigue/musculoskeletal pain amplification disorder. And, it is very real pain, fatigue, and disability – nothing is being exaggerated. In fact, the sheer magnitude of the pain and/or fatigue is a good clue that the patient is suffering from a chronic fatigue/pain amplification disorder – especially when appropriately complete lab testing is normal and the patient looks healthy to the casual observer.

Summary

     Physiologic chronic fatigue and pain amplification represent normal protective reactions on the part of our human physiology. Though such reactions wreak havoc with the quality of life, they do not involve processes that are capable of causing any bodily harm, and the reactions are totally reversible. Although these protective reactions make life miserable (temporarily) for us, our human physiology is not punishing us; it is kindly helping us. Our job is to recognize what our human physiology is signalling to us and to then help ourselves.

     I once had a 13-year-old adolescent female patient with chronic fatigue, who, after listening intently to the above explanation about “protective physiologic reactions,” wisely said: “You mean my ‘human physiology’ is kind of like my inner Mommy? Like, my ‘inner Mommy’ worries about me and wants to let me know when it senses that something is wrong, including being stressed out? And, it keeps worrying about me (and signalling its worry) until I start dealing better with that stress?”

     I replied that that is exactly what I meant. Our human physiology is very much like an “inner Mommy” who cares very deeply about how we are going through life and kindly gives us signals (fatigue, pain amplification, or both) that alert us to the need to take action and find remedy. Like a good mother, our “inner Mommy” will not stop sending those signals until it is convinced that the problem(s) has been accurately identified and is being effectively addressed.

Definitions

     What is “fibromyalgia” and how is it related to a chronic fatigue/pain and sensory amplification disorder? “Fibromyalgia” represents a chronic fatigue/musculoskeletal pain amplification disorder. Fibromyalgia = chronic fatigue + musculoskeletal pain amplification. Usually, the musculoskeletal pain is widespread throughout the musculoskeleton, symmetrical. Throughout this article, I have avoided using the term “fibromyalgia,” because the term is so greatly misunderstood by so many people (including some physicians) and, therefore, has become largely unhelpful. The terms “fibromyalgia” and “chronic fatigue/musculoskeletal pain amplification disorder” can be used interchangeably. I prefer not to use the term fibromyalgia.

     What is “chronic fatigue syndrome” and how does it relate to a chronic fatigue/pain and sensory amplification disorder? Chronic fatigue syndrome represents a chronic fatigue/pain and sensory amplification disorder without the pain and sensory amplification component. In other words, in a “chronic fatigue syndrome” the primary protective physiologic reaction that is occurring is the reaction that causes fatigue; and little or no pain and sensory amplification is occurring.

     Incidentally, the physiological reaction that is responsible for the fatigue (in a chronic fatigue syndrome) is probably a reaction that is the opposite of an endorphin reaction. You have probably heard of a “runner’s high,” which refers to the burst of considerable energy that is triggered by vigorous physical exercise. This exercise-induced burst of energy is due to the release of endorphins, which both energize the body and decrease pain. In the chronic fatigue syndrome, something opposite of endorphin release is probably occurring; perhaps, normal endorphin levels are not being released, or perhaps something that we might tentatively call “fatigueins” are being released. I hasten to add, however, that no such fatiguing physiological substances have, so far, been identified. Endorphins have been identified, but we do not know whether “fatigueins” exist.

     Some patients have pain and sensory amplification but no chronic fatigue. In other words, the primary protective physiologic reaction that is occurring is pain and sensory amplification, and no fatigue-causing reaction is occurring. An appropriate label for that situation would be a pain and sensory amplification disorder. Sometimes, the pain amplification is widespread, involving much of the musculoskeleton, symmetrically – a musculoskeletal pain amplification disorder – as is the case in in fibromyalgia. Other times, the pain amplification is regional – i.e., affecting only one extremity, e.g. (like a foot). This would represent a “regional pain amplification disorder.” An ordinary tension headache represents a pain amplification disorder occurring in the head region.

     Irritable bowel syndrome (IBS) represents a pain and sensory amplification disorder that is primarily occurring in the abdomen – causing, for example, abdominal discomfort, loose bowel movements (often alternating with constipation), and a sensation of bloating.

     Some people experience several of the above-mentioned protective physiologic reactions to tension, sometimes all at the same time – chronic fatigue, musculoskeletal pain amplification, headaches, IBS, other sensory amplification.

     Bear in mind, too, that pain from a disease process, like rheumatoid arthritis, can be heightened when, in addition, the patient develops an emotions-related pain amplification disorder. In such an instance the patient’s pain is partly due to the painful rheumatoid arthritis process but also due to pain amplification. Both can contribute to the pain – equally or asymmetrically. So, when a patient with definite rheumatoid arthritis complains of severe pain (with or without fatigue), it should not automatically be assumed that all of their pain (and/or fatigue) is due to the rheumatoid arthritis.

Dr. Rennebohm is a retired pediatric rheumatologist who most recently practiced at the Cleveland Clinic in Ohio. Prior to that he practiced pediatric rheumatology at Nationwide Children’s Hospital in Columbus, Ohio, and at Alberta Children’s Hospital in Calgary, Alberta. He is a graduate of the University of California San Diego (UCSD) at La Jolla School of Medicine. He now lives in the Seattle area.