Fibromyalgia Experiences

FMS is not a new syndrome. It was first described by William Balfour, a surgeon at the University of Edinburgh, in 1816, but for many years the medical profession called it many different names, including chronic rheumatism, myalgia, pressure point syndrome, and fibrositis. The condition was also thought to be psychological by some physicians.

In 1987, the American Medical Association (AMA), recognized FMS as a true illness and a major cause of disability. Now, nearly ten years later, it is still, unfortunately, too often dismissed as the "newest fad disease", and most physicians still lack the pain conditions. In fact, until recently, it was rare to find a doctor who had even heard of FMS as a "real" condition, and very few doctors have received any substantial training in treating the syndrome.

It is important to understand that FMS is not a catchall, "wastebasket" diagnosis. FMS is a specific, chronic non-degenerative, non-progressive, noninflammatory, truly systemic pain condition. Diseases have known causes and well-understood mechanisms for producing symptoms. FMS is called a syndrome, which means it is a specific set of signs and symptoms that occur together. Don't let this categorization fool you into thinking that fibromyalgiais any less serious or potentially disabling than a disease. Rheumatoid arthritis, lupus, and other serious afflictions are also classified as syndromes. Laboratory tests for fibromyalgia are valid only to rule out other conditions. There is still no blood test that can accurately identify fibromyalgia. The term "syndrome" reflects on our lack of knowledge about the condition, not on the condition itself.

The official definition further requires that tender points must be present in all four quadrants of the body--that is, the upper right and left and lower right and left parts of your body. Furthermore, you must have had wide-spread, more-or-less continuous pain for at least three months. Because tender points can fluctuate and vary from day to day, if you don't have "11 out of the 18" on a given day, your doctor may diagnose "possible FMS" and may need to count the tender points again on future visits. Tender points occur in pairs on various parts of the body. Because they occur in pairs, the pain is usually distributed equally on both sides of the body. Tender points can vary from person to person, which can cause further problems with diagnosis. In "traumatic FMS", for example, tender points are often clustered around an injury These clusters can also occur around a repetitive strain or a degenerative and/or inflammatory problem, such as arthritis. FMS can occur at any age, and are often myofascial trigger points, rather than tender points. Most patients, when questioned carefully, reveal that their symptoms began at an early age.

About 25 percent of the FMS patients I see are men. This ratio differs from most sources in the literature. I think that this is due to FMS being underdiagnosed in males. Pain is frequently the most prominent symptom of FMS, but there are many others. For example, your eyes may be too dry, but at other times they will water. Your thermal regulatory system is out of whack. You may notice this thermal fluctuation when you get out of bed (often due to bladder irritability) during the night. You may have to wait for your temperature to cool down after getting back in bed, before you can pull the bedcover up again. Another symptom of FMS is spasticity (tightness) which can constrict the peripheral blood vessels--those close to the skin. This usually occurs in patients who also have myofascial pain syndrome, so I'm not sure if FMS truly contributes to this phenomenon. This symptom, especially in the winter, makes certain parts of our bodies--most often the buttocks and thighs--feel like cold slabs of meat. You may experience skin mottling, and nail ridges. Fingernails can break off, often in crescent-shaped pieces. If nails do grow, they sometimes start to curve under. The most difficult problems to deal with, however, are often cognitive dysfunctions.

FMS is a sensitivity-amplification syndrome. This means that fibromites are sensitive to smells, sounds, lights, and vibrations. The noise emitted by fluorescent lights can drive you crazy. FMS sensitizes nerve endings, which means that the ends of the nerve receptors have changed shape. Because of this, for example, your body might interpret touch, light, or sound as pain. Your brain knows pain is a danger signal--an indication that something is wrong and needs attention--so it mobilizes its defenses. Then, when those defenses aren't used, it become anxious.

Sleep plays a crucial role in FMS. Perhaps you aren't getting enough sleep, or the right kind of sleep. You may have insomnia, or a host of other sleep-related problems. People with FMS often have the alpha-delta sleep anomaly. As soon as we reach deep delta level sleep, alpha waves (awake) intrude and either jolt us to an awakening or to a lighter stage of sleep. Our body heals and many of our neurotransmitters are restored during delta sleep, so we soon suffer the from sleep deprivation. Neurotransmitters are electro-biochemical agents that cross nerve synapses. They are the vehicles that carry information back and forth between your body and mind. One might say that neurotransmitters are the "information superhighway" between the body and mind.

Much of our mental and physical sense of continuity and security depends upon our ability to repeat appropriate and predictable actions, but this is disrupted in FMS. Neurotransmitters normally inform muscles constantly about what they're doing so their actions can be modified. For fibromites, much of our muscle tension function is improperly controlled by these neurotransmitters. Healthy people think nothing of picking up a glass of water and bringing it to their lips. They know just how tightly their hand has to grip, how heavy the glass of water feels, and how much speed is appropriate to accomplish this act smoothly. Fibromites, however, lack proper sensory feedback. The thumb grasps with too little pressure, and the wrist muscle lets go when flexed. The economy of effort is not there. To enable us to sit, walk, and stand, the entire musculature must be able to feel its own activity.

Only about 20% of FMS cases have a known triggering event that initiates the first obvious "flare." During a flare, current symptoms become more intense, and new symptoms frequently develop.

Myofascial Trigger Points

The first time I opened the Trigger Point Manuals ("Myofascial Pain and Dysfunction: The Trigger Point Manual Vol I & II" by Janet Travell M.D. and David Simons M.D.), I was dumbfounded. After being told for so many years by medical experts that the pain patterns I described did not and could not exist, seeing them illustrated in a medical text brought a flood of emotions. I felt so relieved I cried. I felt validated. Then, as the truth started to hit home, I started to get angry. Why didn't these "experts" have knowledge of Travell and Simons' work? Why hadn't I learned about these texts in medical school! Janet Travell was JFK's White House physician. She and her partner, David Simons, had done groundbreaking work. I remember the press making a big deal about the rocking chair Janet Travell designed for JFK, but I read nothing about trigger points. Perhaps they thought it wasn't "newsworthy".

Most specific, localized pains commonly attributed to FMS are actually from myofascial trigger points. TrPs seem to form throughout life as a response to many stressors. Overuse, repetitive motion trauma, bruises, strains, joint problems, acute or chronic stress, etc. Pain creates a neuromuscular response, and the muscle around the pain site tightens, "guarding" the hurt area.

When muscles are in a state of sustained tension, they are working, even if you're not. A working muscle needs more nutrition and oxygen, and produces more waste, than a muscle at rest. This creates an area in the myofascia starved for food and oxygen, and loaded with toxic waste--a trigger point.

Dr. Janet Travell, in her autobiography, "Office Hours Day and Night" explains how dizziness, ringing of the ears, loss of balance, and other symptoms can all be caused by TrPs in the side of the neck, in the muscle group called the sternocleidomastoid (SCM) complex. This muscle has many functions, one of which is to hold your head up. Receptors in the SCM complex transmit nerve impulses inform the brain of the position of the head and body in the surrounding space. With TrPs, the receptors lies. What they tell the brain is not what the eyes tell the brain. If there are TrPs in the muscles of the the eyes, they are lying too--only probably not in the same way as the SCM. When head movement changes the SCM message--when you turn, or look up from changing kitty litter, you get dizzy. This, coupled with poor balance, can make it seem that the walls are tilting. When we take corners while driving, we get the impression that we're "banking" the turn at a steep angle, as if we're on a motorcycle. Cold drafts alone can bring on neck TrPs. And be careful how you move in bed. When you turn, roll with your head flat, and use your arms to help. Don't lift your head and "lead with it" as you roll. That puts a great strain on the neck area and electrically "loads" the SCM TrPs, just as climbing steps or walking uphill "loads" the muscles of the thighs. This means that the electrical potential of the muscles are changed, and the change is not to our benefit. A common symptom of SCM TrPs is a "drunken" walk, as we bump into doorways and walls. An active TrP not only hurts when it is pressed, like an FMS tender point, but it "triggers" a referred pain pattern somewhere else in the body. This pain pattern is similar from patient to patient. These trigger points and often produces other symptoms, also usually in its involved muscle. When the point becomes very active, pain and other symptoms occur even when the muscle is at rest. The fact that these pain patterns are very much similar from patient to patient really helps make a diagnosis IF the clinician is familiar with the patterns so well described by Travell and Simons. That's why familiarity with TrPs and an ability to take a good medical history is so important. An educated doctor will know where to look for TrPs before the physical exam begins. This is important, because pressing hard on the TrPs activates them, and an examination can make you feel like you've been hit by a truck. Once the clinician knows the patterns, a light touch can indicate the presence of the ropy bands.

A "latent" type of TrP also occurs. The latent TrP doesn't hurt at all, unless it is pressed. You might not even know it's there, but your body does. The TrP restricts movement, weakens, and prevents full lengthening of the affected muscle. If you press on the TrP, it refers pain in its characteristic pattern. A latent TrP may be activated by overstretching, overuse, or chilling the muscle. People who get little exercise have a greater chance of developing latent points. This is important, because some people feel that by restricting their range of motion, they are getting rid of their TrPs. Nothing can be farther from the truth. Physical stress isn't the only thing that can cause TrPs. Tension TrPs can occur. These are not the psychological result of tension, but they are from the biological effects of long term emotional abuse or mental trauma. If you are constantly holding your muscles tight in a "fight-or-flight" stress response, this changes your body patterns. TrPs cause muscle strength to become unreliable. You may have also have noticed that if one part of your body turns over another while you sleep, the part being compressed goes numb. Some other symptoms include: stiffness, muscle tightness and weakness, localized sweating, tearing, salivation, poor balance, dizziness, nausea, tinnitus, goosebumps, runny nose, buckling knees, weak ankles, illegible handwriting, staggering gait, headaches, and muscle cramps.

TrPs often form as a result of other medical conditions. A case of arthritis may be otherwise well managed, for example, but the accompanying TrPs are overlooked. The pain load of that patient could be substantially lessened if the secondary TrPs were treated successfully. If the TrPs continue to recur, it is an indication that there is a perpetuating factor that is not being addressed. Diagnosis gets challenging is when FMS and MPS occur together. But before we get into what I call the FMS/MPS Complex, let's look at chronic MPS

Secondary trigger points develop when a muscle is subject to stress because another muscle with a trigger point isn't doing its job. Satellite TrPs develop when a muscle is in a referred pain zone of another TrP. Without proper intervention and with perpetuating factors, the TrPs can lead to severe and widespread chronic myofascial pain syndrome (MPS).

Developing secondary and satellite TrPs can give the false impression that MPS is a condition that will steadily worsen with time--that it is what is called progressive. However, MPS is not progressive. With proper intervention, which you will learn about throughout this book, these trigger points can be broken up and eliminated.

FMS and MPS are different syndromes. However, the vast majority of physicians lump them together because they see many patients with the FMS/MPS Complex. Unless doctors have a thorough knowledge of and familiarity with individual TrPs, however, they don't stand a chance of sorting out the symptoms. And YOU don't stand much of a chance of getting better, or getting the documentation that you need for relief of pain and suffering. You have been robbed of the validation behind the main source of your pain. This problem will continue until we demand to have medical care practitioners educated in MPS as well as FMS.

One interesting difference between the two syndromes is that more women than men have FMS, but MPS affects men and women in equal numbers. Another difference is that muscles in locations that are some distance from the trigger points of MPS have normal sensitivity. In fibromyalgia, there is a generalized sensitivity.

FMS is a systemic neurohormonal dysregulation, with many biochemical imbalances. There are other problems as well, but they are all systemic in nature, such as the alpha-delta sleep anomaly. Myofascial Pain Syndrome, however, is a neuromuscular condition. MPS happens because of mechanical failures--the mechanics of physics, not biochemistry. Due to the nature of trigger points, some of the symptoms may seem to be systemic, but they are not. Initiating events, such as repetitive motion injury, trauma, and illness, can start a cascade of TrPs.

FMS/MPS Complex

In FMS/MPS, a chronic pain condition exists, with many different symptoms and the trigger points of MPS, which are all magnified by the pain amplification aspect of fibromyalgia (FMS). Furthermore, some of the treatments normally prescribed for FMS patients can cause damage to MPS patients and the reverse is also true. In the context of the fibromyalgia syndrome, many different neurotransmitters are affected, and FMS can affect them in many different combinations. Also, different combinations interact in different ways, and other biochemicals in the body are affected to different degrees. Various hormones may be involved. Histamine (a neurotransmitter) is often a important factor when there are many allergic manifestations; but the possible combinations are endless. Especially when you figure in the possible combinations of TrPs. It may well be that FMS perpetuates MPS and that the reverse is also true. The spiral of pain/contraction/pain/contraction continues until it is interrupted by an outside force or relief in some form. Then, too, chronic pain, all by itself, causes stress. That's another reason why many cases of FMS are accompanied by MPS. But don't despair. A lot can be done to relieve MPS and lighten the pain load. And there are many things that work for FMS as well. It's important for people with this combination of syndromes to take on the responsibility of managing their own treatment. It isn't easy, and it takes concentrated focus to change the habits of a lifetime. Getting as well as possible--optimizing your quality of life--takes commitment. What is done to or for you can help a lot, but getting better is primarily a function of what YOU do to help yourself.

When you have active myofascial trigger points, you have to be extremely careful when exercising. If you are having pain from an area even when you are resting, Travell and Simons tell us that this is an indication that the TrPs are very active. Gentle passive stretch and hot packs are the extent of your "exercise" recommendations. Stretching can be done in a hot tub, etc, but take it easy. From Vol.I of the "Trigger Point Manual", as the TrPs are inactivated, "Patients should avoid activities that produce repetitive muscular loads, such as shoveling snow, raking leaves, vacuum cleaning, painting a wall, or unloading a dishwasher. If such tasks must be performed, then the movements should be varied and sides alternated so that contralateral muscles are used in turn. The number of repetitions of the movement should not exceed 6 or 7 times, with pauses to allow the muscle to rest." This should not be done when the muscles are tired or cold. This is also why I tend to get very annoyed with "rehab" clinics that put patients with active TrPs on work hardening and weight training. It is also why one of the worst perpetuating factors of Trigger Points is inappropriate treatment. The data is presented plainly by Travell and Simons. There is absolutely no excuse for it. If you doctor won't listen or read the "Trigger Point Manual", each book is a weighty medical text. When all else fails, dropping one on your doctor's toes or hitting her/him on the head with one of them might do the trick!

top

home | about me | about fibromyalgia | my experiences | share your experiences
treatment | family-friends | resources |