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Fibromyalgia/Myofascial Pain Syndrome

Devin Starlanyl, M.D.

Contents


1. Introduction

Pain is often the most prominent symptom of FMS, but there are many others, especially when MPS gets in the picture. Trigger Points (TrPs) cause muscle spasticity (tightness), which disrupts the flow of liquids in the body. Your eyes may often be dry, yet sometimes they water. Your thermal regulatory system is out of whack. This is noticeable when you get out of bed (often--due to bladder irritability) during the night. Spasticity can constrict your peripheral blood vessels those close to the skin. Then, in the winter, certain areas of your body, most often the buttocks and thighs feel like cold slabs of raw meat. Perhaps you have a chronic runny nose, which starts a "domino effect". It's a "mechanical" runny nose, caused by constriction of normal drainage passages, not caused by an infectious agent. As you sleep, stuffiness in your nose moves from side to side as you turn over in bed. Post-nasal drip hits the back of your throat all night, causing you to wake up with a sore throat. Throat and neck TrPs, especially in the sternocleidomastoid (SCM) muscle, develop satellite and secondary TrPs. Soon you have TrPs down your arms, and loss of motion in your neck and shoulders. The constant back up from ever-more restricted vessels can result in a sinus infection, because germs take advantage of the situation.

Dr. Janet Travell, in her autobiography,"Office Hours Day and Night" noted that dizziness, ringing of the ears, loss of balance, and other symptoms can all be caused by SCM TrPs. Dr. Travell was White House physician to JFK. She and her partner, David Simons, wrote the definitive texts on MPS.

The tight SCM complex transmits nerve impulses that inform the brain of the position of the head and body in the surrounding space. It doesn't match the input from your eyes. When head movement changes the SCM messages to the brain, like when you turn or move fast, you get dizzy. This, coupled with poor equilibrium, 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 can bring on neck TrPs. Also, be careful how you move in bed. When you turn, roll with your head down and flat, and use your arms to help move. Don't lift your head and "lead with it" as you roll over. That puts a great strain on the neck area and electrically "loads" SCM TrPs, just as climbing steps or walking uphill "loads" the muscles of the thighs.

A common symptom of SCM TrPs is a "drunken" walk, as we bump into doorways and walls. Muscle weakness causes us grief. This is often due to plain "latent" TrPs. They aren't "active"--they don't cause pain unless we press them. But if we stress them, they "give out". You try to take a drink from a glass, and end up wearing your drink. As you twist your wrist to bring the drink to your mouth, a latent TrP stressed muscle is asked to support the drink. Your body couldn't tell where the drink was in relation to your mouth, nor how heavy it was, ie how many motor neurons should be activated to complete the task.

Learn to use two hands to carry things, not to carry heavy things at all, and be prepared for lots of spills. When your muscles frustrate you, don't dwell on it. Move on. Don't berate yourself for something you can't help. Our worst enemy isn't pain or muscle weakness, it's negativity. Cultivate a sense of humor. Wear printed fabrics. Use straws.

Another distressing facet of TrP inspired muscle weakness is the "weak ankle, weak knee". You're walking across level ground and bam! You're down. Or you "catch yourself" and avoid the fall, stressing muscles even more.

Be cautious on steps. Be especially careful on uneven surfaces. Vary your tasks, use different muscle groups. Slow your working pace. Listen to your body. Rest often. Cultivate a rhythm of movement. Play music while you work, if you can. Don't fight your body, work with it. If at all possible, lie down for a few minutes at times during the day. Rest the muscles working to hold your head up. Don't sit too long in any one position.

When you drive, pull of the road every hour and walk around the car. Stretch. At home, use a rocker to prevent the muscles from building up electrical activity. When you must lift,keep the load close to your body, and look up just before you lift. That tightens the long spinal muscles helps your back. Added stress to the body will cause FM to flare.

Any infection, or yeast overload, is also stress. Disrupted carbohydrate metabolism of FM patients causes intense craving for sweets, which feed yeast. Carbohydrate-cravers snack not because they're hungry, but because they need missing neurotransmitters, especially in the late afternoon and early evening.

The alpha-delta sleep anomaly of FMS makes it just about impossible to get rest. When morning comes, you're stiff, achy, and your muscles are unresponsive. Your body/mind hasn't received the proper quality nor quantity of sleep it needs. You feel as though you've had a run-in with a truck the day before, and the truck won.

In delta sleep, deep sleep, immune chemicals and rebuilding chemicals are created, and the body/mind is repaired. When an FMS patient enters delta stage, sleep is interrupted alpha (awake) wave intrusion. We're jolted up to light sleep or totally awake. We never get the deep, refreshing sleep others enjoy. Medications, such as amitriptyline, may increase the quantity of our sleep, but they do nothing for the quality.

FMS patients can also get bruxism (teeth clenching and grinding), muscle spasms in the arms and legs, twitches, sleep apnea and shallow breathing (check out those chest TrPs). We also feel sleepy at "inappropriate" times. If we push ourselves "over the hump", we slide into a wakefulness/insomnia pattern. It's important for us to eat regularly (and not too close to bedtime), avoid stimulants, avoid alcohol, and develop regular sleep patterns. Some of us need waterbeds, and almost all of us need cervical pillows.

2. Social Security Disability

This was well covered in an article titled "Helping Fibromyalgia Patients Obtain Social Security Benefits", by Joshua W. Potter. Esq. (attorney), in the September 1992 edition of "The Journal of Musculoskeletal Medicine". The Social Security Administration (SSA) defines disability as "An inability to perform any substantial gainful activity because of medically determinable physical or mental impairment...for a continuous period of not less than 12 months."

Claims are made at the SSA District Office in person or by telephone (800-772-1213). They will ask you the nature of FMS, your physician(s), and job background. The SSA will then investigate your: medical history initial description of condition, including capacity for lifting,walking, standing, & sitting; job history, date last worked,description of past work; and proof of citizenship and insurance, status. A response from this may take 6 to 8 months. The physician-reviewer who is part of the reviewing team is usually not a practicing physician and probably knows little or nothing about FMS or MPS. Initial applications for disability are routinely denied. Be prepared.

An appeal must be made to the SSA within 60 days of its mailing. The SSA will not have a legal basis to hear your appeal if it's late. This appeal is called a "request for reconsideration". This appeal may be made at the SSA District Office or through an attorney who deals with these cases. The attorney will charge 25% back benefits from the time when you are unable to work. This request triggers an in depth investigation of your problem and abilities, including your medical charts. You may have to be examined by a physician working for the Disability Determination Service.

To quote from the article, "Frequently, waits are long, examinations are brief, and medical records are not available for review by the SSA physician, who is paid approximately $88 for the examination and report." Again, it is usual that the request is denied. There is no time limit to this determination, and can take 6 months or more. The denial usually will have suggestions for alternative work, which usually has no relation to your work history. You don't have to act on these alternatives.

At this time, you must file a "request for hearing" within 60 days. This will result in a trial by a judge, usually within 4 months. At this time, "experts in forensic medicine and trial advocacy are needed." You will testify, as well as your physician. If the judge rules that you are not disabled, you may appeal to the Appeals Council within 60 days. Their decision, usually within 7 months, almost always agrees with the judge. This may be appealed by filing suit in the US District Court. An attorney for this must have a special license. Usually, if anything, the District Court will return the matter for a new hearing (a remand). This is based on the initial application. Now you understand why they call us "patients"!

The key is a comprehensive medical chart and report. Your physician must be familiar with the SSA "Listing of Impairments". This is contained in "Disability Evaluation Under Social Security," available from the Office of Medical Evaluation of the Office of Disability, SSA, 6401 Security Blvd., Baltimore, MD 21235. Of course, there is no specific listing for FMS or MPS. Sometimes people have to utilize other headings, since we often have many of the criteria for psychiatric or other disability. Your doctor must have a detailed medical record for you. Not only your medical signs and symptoms but adaptive reactions, physical limits and dysfunctions. "Every patient visit should result in entries concerning physical capacities (verified with measured weights);time durations for sitting, standing, and walking (by history); the nature, location, and intensity of pain (by history); psychosocial and adaptive behavior, including the ability to interact appropriately with others, follow instructions, and adhere to a regular schedule; and the complex of depressive symptoms." You must be incapable of performing ANY work, although there is some flexibility in this rule if you are over age 50.

Most work requires regular attendance, the ability to concentrate and follow instructions, etc. "A claimant's case is greatly furthered by a report that reads: 'Patient's past work required sitting all day, analysis of complex data, and lifting to 10 lb. Now the patient can sit a maximum of 20 minutes, cannot concentrate because of medications and pain, and is always exhausted because of lack of sleep. Patient is irritable, argumentative and misses appointments. Measured lifting is now to 3 lb. Cannot and should not work....'" If the medical notes on your chart are vague, forget benefits. You are orchestrating your medical team. Make sure your key player, your physician, is caring, careful and understanding. He should specify your pain, and list those things that make it worse.

A complete report, if supported by a good medical record, need only be two to three pages long. The fact that FMS isn't on the "List of Impairments" is a real minus. We have to educate ourselves and others. This includes writing congressmen, etc. Plain SSA disability benefits range from $350 with Medicare starting 24 months after onset of FMS. Benefits are payable as of one year before application. Supplemental Security Income is payable from the application.

The cards are even more stacked against people trying to get a positive settlement on an insurance case. The Fibromyalgia Network had a good article on this in the July 90 edition. Radnor, an attorney, pointed out that many doctors don't believe there is such a disease as FMS, and the symptoms are psychological. You often have to see several physicians before obtaining a diagnosis of FMS. You say you are in pain, but where's the proof? Your tests are normal. Paul O. Scott, attorney, says a big issue is that studies indicate patients are predispose to FMS genetically. Both attorneys state flatly that orthopedic surgeons don't, as a rule, believe in FM. Clearly, education is needed.

3. A GUIDE FOR RELATIVES AND COMPANIONS

What exactly is FMS and MPS?

FMS is a "chronic invisible illnesses". It is NOT a form of muscular rheumatism. It's a type of neurotransmitter dysfunction. (Neurotransmitters are how the brain and body communicate.) It is a systemic, non-inflammatory, non-progressive pain amplification syndrome. If inappropriately treated, it may SEEM to progress.

MPS is a neuromuscular condition. It may SEEM to be systemic and appear to progress if not appropriately treated. FMS and MPS are not uncommon.

One major symptom of FMS is a type of dysfunctional sleep--the alpha-delta sleep anomaly. As soon as people reach deep level sleep, alpha brain waves intrude, bringing the patient to shallow sleep or wakefulness. Not only are patients denied refreshing sleep, but delta level is when the body does its repair work and much of it's biochemical replenishment and regulation. If people with FMS are immobile, such as during travel, or sitting in a meeting, their muscles get rigid and painful. Morning stiffness can be severe.

Since neurotransmitters affect every part of the body, symptoms can show up all over, yet the usual medical tests come back negative. FM sympto}{\plain fluctuate from hour to hour and day to day, and often worsen with changes in barometric pressure. It"s no wonder that FMS is one of the most misdiagnosed illness. Doctors often refer FMS psychologists or psychiatrists, and yet recent studies show that psychologically, FMS patients have about the same amount of abnormal psychology as Rheumatoid Arthritis patients. An editorial in the Journal of the American Medical Association in 1987 stated "...a disease which may have occupied five minutes of time in medical school really exists and is a major...disability."

People with FMS have a history of being unsupported and doubted. Research is showing that people with FMS have low growth hormone, which is involved with muscle repair. The FMS body is an engine idling at 35% power, rather than a normal 5%. Most FMS patients have significant cognitive impairments.

In FMS there is a dysregulation of neurotransmitters such as serotonin, melatonin, norepinephrine, dopamine, and other chemicals which help control pain, mood, sleep and the immune system. It looks like there is a genetic predisposition to FMS. Often there has been a trigger event, such as accident. An American College of Rheumatology study in 1992 found that the impact on your life is as bad, or worse, as that of Rheumatoid Arthritis. They listed one major factor in this as "clinician bias". FMS patients don"t look sick, so they are often victimized by clinicians, family, and friends, leaving them with self-doubt and low self-esteem.

People with FMS have more pain receptors than healthy people--their receptors change the shape of their endings, causing touch receptors, etc to become pain receptors.. They are hypersensitive to everything, sort of like the "Princess and the Pea" in the nursery stories. Little things that others take for granted, like wringing out a wash cloth, or writing a letter, can become pain endurance sessions.

How can someone know if they have FMS?

Suspect it if you have a history of diffuse, widespread pain, and wake up every morning feeling like you"ve been run over by a truck. You may have headaches and loss of balance. You can't find your car in a parking lot. On your best days you feel as though you have the flu. You usually develop esophageal reflux, and put on weight, especially in a fat pad over your belly. Some objective signs are ridges on the fingernails and mottling on the skin. Sometimes you get muscle twitches. You are magnetically sensitive, and prone to "sensory overload".

Technically, you will have 11 of 18 specific"tender points" When these spots are pressed, you will have pain. Traumatic FMS may have the tender points clustered around the trauma. Fibromyalgia patients often have chronic myofascial pain syndrome. That"s a musculoskeletal dysfunction that has "Trigger Points". These are incredibly painful areas that often feel like knots or lumps in the muscles.

Taut bands of fibers form in the muscles. These TrPs refer pain to other areas. They can trigger gastritis, or irritable bowel syndrome, grinding of teeth at night, pain when you put your hands in cold water, dizziness, chronic inversion sprains of the ankle, weak knees, weak ankles, pelvic pain, dysmenorrh and painful intercourse in women, impotence in men, etc. The tightened and spasming of the muscles can entrap nerves, blood vessels, and ducts. You can have blurring of the eyes or double vision. Leg cramps, reactive hypoglycemia, problems with vision, immune dysfunction, allergies and chemical sensitivities, sciatica, hives and rashes, numbness and tingling, mood swings, confusional states, loss of balance sometimes the list seems endless.

What can we do for someone who has FMS and/or MPS?

There is no cure for FMS/MPS. When the two conditions occur together, it is more than the sum of the parts. The two conditions, which I call FMS/MPS Complex, seem to feed on each other. The muscle tightness causes more pain which causes more tightness. There are medications that help some symptoms. Trigger points can be relieved by some types of physical therapy. It takes a commitment on the part of the patient to practice good nutrition, a program of gentle stretching and moderate exercise, and a recognition from the patient and her/his companions in life that there are real limitations with FMS/MPS. It isn"t easy to find the right balance to optimize the quality of life. Be kind. Be patient. Be compassionate. Listen. And ask if there isn"t something you can to help.

4. FMS/MPS Complex

Synapse: the functional membrane to membrane contact between one nerve cell and another nerve cell, receptor, or other cell. In most cases, impulses are carried across the synapse by a chemical transmitter "bridge".

Neurotransmitter: any specific chemical agent released by a presynaptic cell when activated, that causes the synapse to stimulate or inhibit the postsynaptic cell.

Serotonin: a vasoconstrictor (constricts blood vessels) liberated by blood platelets, that inhibits gastric secretions and stimulates smooth muscle. It is present in large amounts in some areas of the Central Nervous System.

Myofascia: the thin layer of connective tissue that covers, supports and connects the muscle cells, muscle fibers, and the whole muscles, as well as forming tendons and ligaments. It is the support network that gives the body its shape, and determines its flexibility.

Some times the start of FMS/MPS Complex creeps up on us. It can start with a chronic runny nose. With muscle tightening, normal fluid passages are constricted. Fluid backs up in the sinuses, causing constant post nasal drip, although the nose itself may be dry.

Patients complain of unilateral sinus blockage, which changes from side to side as they turn in bed. The side they sleep on most often has the worst pattern of symptoms from post nasal drip. The SCM TrPs are sore on that side, and the scaleni, with a morning sore throat and digastric TrPs. From there, more TrPs develop in the referred pain region, and these go on to develop their own secondary TrPs. Sometimes this cascade can be avoided by using warm salt water as nose drops before bed, cleaning off the nasopharynx area and preventing post-nasal drip.

Some FMS/MPS patients say their symptoms started after a severe cold or flu. Some feel that whiplash or other neck trauma triggered the problem. Both of these conditions have a commonality in neck congestion. Others have had their symptoms start in the hips, especially after a difficult pregnancy, or a fall. Others have body asymmetry that starts the Trigger Points, and eventually, if the patient has a FMS tendency, the chronic pain from MPS can trigger FMS. FMS consists of several subsets, just as there are many forms of arthritis. There seems to be a genetic predisposition. Many FMS patients have multiple environmental sensitivities.

To understand FMS/MPS complex, look at the big picture. Neurotransmitter activity determines the plasticity of the tissues. Most of the body"s processes rely on the appropriate movement of fluids through the system. In FMS/MPS, connective tissues become stiffened, shortened and tightened. We know growth hormone has a powerful effect on connective tissue. It directly stimulates the production of fibroblasts and mast cells, ground substance and collagen fibers. It"s significant in wound healing, where rapid production of collagen fibers by many fibroblasts is necessary for repair.

But growth hormone is released during delta-level sleep. People with FMS often have the alpha-delta sleep anomaly. The patient with fibromyalgia never enjoys uninterrupted delta level sleep. The body can"t repair itself, because repair occurs during delta sleep. Connective chemistry monitors inflammatory response, and its fluids deliver antibodies and white blood cells to fight infection. All of these are disrupted in FMS. Immune killer cells are present in the normal amounts in FMS, but many are dormant.

Much of our psychological and physical sense of continuity and security depends upon our ability to repeat appropriate and predictable actions. Spindle reflex arcs keep muscles constantly informed as to what they"re doing, so that the action can be modified. In FMS, most of the required muscle tension of the body is improperly controlled by the higher brain centers. Others think nothing of picking up a glass of water, and bringing it to the lips. They know how much contractile effort and speed it will take to do this smoothly. People with FMS/MPS have muscular "incompetence in the absence of proper sensory feedback". The thumb grasps with too little pressure. The wrist muscle lets go when flexed. The economy of effort is not there. To sit, walk, and stand, the entire musculature must feel its own activity.

FMS/MPS patients are usually burdened with a long history of undiagnosed illness. They suffer from loss of self-esteem. Their condition is invisible, so friends and family don"t believe them when they say they hurt. Yet FMS amplifies the slightest pain. Skin tissue scars and tears easily. FMS itself seems to trigger Myofascial Pain Syndrome.

Acute pain from FMS creates a muscle contraction, "guarding" around the tender points. This impairs circulation and neural transmission through the area. This effects not only the muscles, but the surrounding organs. A muscle in a state of sustained tension is working, thus its need for nutrition and oxygen is high. At the same time, the sustained contraction reduces circulation in the area by squeezing the small arteries and capillaries which give the working cells fuel and oxygen. Chronic muscle tension and contracture creates an area of heightened metabolism and ischemia and buildup of toxic waste--a Trigger Point. The contracting muscles produce increased waste products and demand increased nutrients from capillaries that are less and less able to handle them. This causes more contraction. This results in rigid muscles until the Trigger Points are defused and the perpetuating factors resolved.

5. Resources and Definitions

Fibromyalgia Network
POB 31750 Tucson AZ 8575-21750
602-290-5508

National Foundation for Fibromyalgia
POB 3439
San Diego CA 91263-1429
800-251-9528

Social Security Administration
800-772-1213

National Family Caregivers Assn
9223 Longbranch Parkway Silver
Springs MD 20901

Migraine: constricted blood vessels inside the skull which suddenly expand. Strong correlation to food sensitives, and neurotransmitter imbalances. Serotonin regulates the constriction and dilation of blood vessels. Prodrome aura of visual disturbances that can include zigzag lines and flashes of light. the trigeminal nerve pathway involved runs close to our reticular formation in the eyes. The constant stimulation of both decreased blood flow and increased nerve involvement causes optical effects.

Esophageal reflux: back pressure opens a muscular valve, called the cardiac sphincter, between the bottom of our esophagus and top of stomach. Bending over or lying down often adds just enough pressure to gravity to cause reflux. Also, lax connective tissue can cause hiatal hernia problems.

Itches: there are many kinds of itches--sensory itch, and allergic itch are the most common. Merkel"s discs in the skin are pressure plate receptors in outer skin layer. Unfamiliar pressures are translated into itch, the skin "default" sense. Trigger Points can also result in itch. For example, the coracobrachialis referred pattern on the forearms often becomes itch, rather than pain. The masseter TrP can cause a maddening itch inside the ear. Cold numbs the receptors. Dryness creates an enhanced pressure reception. Check for possible causative TrPs.

6. Guaifenesin

Guaifenesin (pronounced like "Gwhy-fenesin"), is an over-the-counter (OTC) medication usually used to loosen phlegm and mucous in lungs and helps you to cough it up. R. Paul St. Amand M.D. discovered that it may reverse the process of fibromyalgia.

Guaifenesin is the active ingredient in many cough expectorants. Unfortunately, most of these same medications are found with a large amount of sugar and alcohol. For some reason known only to the Food and Drug Administration, the pill form is prescription only. It is important to drink at least a full glass of water with it. You may become very thirsty, and want to carry some water around. Guaifenesin dosage is started low at first. It may cause stomach upset or nausea, which should disappear as your body adjusts to it. Store guaifenesin between 59 and 86 degrees F--not in the refrigerator or very warm room. It will thin your secretions.

Most people will begin dosage at 300 mg twice a day, understanding that there will probably be a period of flu-like fatigue as stored toxins and excess phosphates start releasing. Your body may urge you to sleep. Listen to it. Your liver and kidneys are working hard to process toxins and excess materials, so that they can be excreted. Following this initial period, raise the dosage to 600 mg twice a day if tolerated. Guaifenesin dosage is generally raised 300 mgs a day at a time. As the FMS starts reversing, adjust the dosage higher or lower on an individual basis.

Every pattern is different. IT IS EXTREMELY IMPORTANT TO AVOID SALICYLATE USE DURING GUAIFENESIN TREATMENT. SALICYLATES, FOUND IN MEDICATIONS LIKE ASPIRIN, DOLOBID (DIFLUNISAL) PABA, AND TRILISATE WILL BLOCK THE BODY"S EFFORTS TO EXCRETE THE EXCESS PHOSPHATES. The toxins will be liberated from the myofascia, but will circulate in the blood without being excreted.

Large quantities of herbs and herbal teas should be avoided, as many are rich in salicylates, unless you can be sure without doubt that the herbs have none. Small amounts of herbs for seasoning are acceptable. Listen to your body. If you get a sudden worsening of symptoms, seek what may be blocking the guai. Many topical creams, including PABA sunscreens, are salicylate-related. Ask your pharmacist. Many commonly used medications, such as Alka-Seltzer, are also rich in salicylates. Read your labels.

The amount of fatigue and symptoms the reversal entails will vary with the patient, possibly due to the amount, placing and nature of myofascial deposits, the length of time and severity of the FMS/MPS, how efficient the liver and kidneys are at detox, and how much bodywork has already been done to break up deposits in the myofascia and elsewhere. Dr. St.Amand suspects that one inherited problem in FMS is a tendency toward a defect in phosphate excretion, which ultimately causes an accumulation of phosphates within the mitochondria (our cellular "chemical factories").

Dr. St. Amand has found that FMS is cyclic in nature. Symptom cycles start long before there is any suspicion of disease--often as "growing pains" in childhood. During guaifenesin treatment, previous symptoms may be relived by the patient--physical and emotional--often in a reverse of their first occurrence. He has found the FMS reversal to be a cyclic process as well, although we have not seen exact reversal of symptoms in our local group.

Most people on guai for FMS reversal gradually begin to have more and more good days and finally, the good days start to cluster. He has found that, on the average, several months of treatment at the proper dosage will reverse one year of accumulated deposits. The longer the patient has had the illness, the longer it will take to recover.

Dr. St. Amand warns people that guaifenesin therapy is "not for the faint of heart". When the toxins and excess stored material are liberated, you may experience nausea, fatigue, increased aches, eye irritation, abnormal sensations, abnormal taste (foul or metallic), burning on urination (excess phosphates are excreted as phosphoric acid), pungent smelly urine, and bladder infections.

I have found that people who have done a great deal of body work--accupressure, tennis ball compression, sine-wave ultrasound with electrostim, GMS, stretching, etc. and pay attention to good body mechanics, good nutrition, and use the FMS/MPS vitamin regimen while taking the guaifenesin seem to have much more rapid reversal of FM/MPS without most of the symptoms reversal phenomenon.

Dr. St. Amand has found three subsets in his clinic practice. One subset goes through FMS reversal relatively quickly at 300 mg twice a day. The largest subset reverses at 600 mg bid. Another subset needs 1800 mg a day or more, and just sputters along slowly through the reversal process. Some people need more than 1600 mg a day.

The calcium excreted is limited to inappropriate calcium surplus. None of Dr. St. Amand"s patients have developed osteoporosis. Odd skin rashes can be common during the reversal period. These can be scaly rashes, like eczema, blistering, adult acne, or skin cracking. He has also found that at some time after the adequate dosage for reversal has been reached, the patient may lose a large amount of "inferiorly-formed" hair that is replaced with healthy hair. We have found significant hair-loss to be rare.

During guaifenesin, avoid adding phosphoric acid to your body. Colas, for instance, are loaded with it. It makes no sense to add phosphoric acid to your metabolism when your body is already working hard to get rid of its excess.

You may also have a burnt taste in your mouth, pimples, gunky eyes, and an acidy smelling perspiration unique to guaifenesin reversal (fortunately), and very strong-smelling urine. The urine can get very dark--deep yellow, or even brown. Vaginal secretions turn acidy. Women may get rashes and burning from it. Male partners sometimes also feel the effects. You may experience soreness in the crease between your buttocks, possibly due to the acidic nature of the urine. It is important to remember that these signs and symptoms are NOT side-effects of guai. They are from the toxins and excesses being released by the guai, and are a good sign, although it won"t feel like it at the time. At least you"ll understand why you often felt "toxic". You were.

Headaches are very common on the first reverse cycle. There are some "ouch spots" on the back of the neck you can find with moderate pressure, on the hairline. Ice on these sometimes helps endure the first cycle. When I saw Dr. St. Amand, he warned me that my hardest job would be encouraging people to continue guaifenesin therapy through the first cycle. He was right.

Encouragement isn"t as difficult lately. Almost every time our group meets, someone mentions they are working full-time and their symptoms are in remission or greatly eased, thanks to guai. I know I have had severe FMS/MPS for a long time, and I have a lot of perpetuating factors--some of which I can do nothing about. It's a long, tough road ahead, but I know it"s the right one. In a year and a half on guai (and a lot of bodywork, mindwork, and attention to perpetuating factors, I feel I"m a lot better.

It is interesting to know that besides using guaifenesin for its expectorant qualities, it has also been used to help women get pregnant. It thins the cervical secretions, making it easier for the sperm to reach the egg. For the first few months on guaifenesin, expect to be spitting out mucous that has been clogging your airways. It"s a wonder we get enough oxygen.

We"ve had several people who have had blood analyses report that their liver enzymes were high. That could be due to the heavy detoxification. You may have to cut back on the guaifenesin and/or the bodywork. Don"t push it. It took a long time for your body to get this toxic. The liver and kidneys can"t clean it up overnight. Be good to them. They are working very hard for you. Allow enough time between bodywork sessions so that you recover from one before the next begins.

You shouldn"t be totally fatigued before a bodywork session. You may also want to allow some time for your body to adjust to healing. It will be finding a new balance every day. You may have to adjust the guai so that too much toxin isn"t hitting the liver at once. We have one elderly person who has severe chemical cirrhosis, and many other perpetuating factors, and yet has very slowly been able to detox her body with guaifenesin. She is now able to take aquatic aerobics.

Sometimes guai is working on feeder deposits. These are large deposits which release vast quantities of debris and toxins as these huge myofascial lumps dissolve. The liver and kidneys can only handle so much at one time. Excess debris forms temporary deposits--even on the teeth sometimes, until the liver and kidneys catch up processing the wastes.

Expect plateaus in the reversal process. Don"t get discouraged. We are all different. Allow your body to find the best pace. Knowing that guai thins secretions and works at a cellular level, I have a theory. It may work mechanically, cleaning off gummy cellular membranes. I suspect it works on the inner mitochondrial membrane, but that"s just a guess.

I feel that the nature of our reversal depends on the nature of our deposits: how many, how dense they are, how much and what kind of tissue is displaced and how good your body is at detoxifying. Also important is our electrolytic balance--we need good balance for body maintenance, and to handle the disruption caused by extra calcium phosphate (and who knows what else) release. A good mineral supplement will help. This reversal process is not easy, but neither is FMS/MPS. There"s no way out but through.

Fibromites usually have thick secretions. If you wear glasses, they gunk up from nasal secretions when you blow your nose. Our sweat can precipitate photoreactions from the sun. We often need more toilet paper than most to cleanse, or we need to use wet wipes, though this observation isn"t something that people often volunteer. Guai thins our sticky secretions. It"s all connected.

During each stage of FMS regression, your body/mind needs to find its new balance, and you may have to adjust your medications. You may be able to drop medications altogether. I was off reflux meds for a year, until recently, when the extra burden of writing the book, coupled with an incredibly hot summer, caused the return of reflux. I know that as soon as I cut back on the work, the reflux will go. Listen to your body. Help it detoxify as much as possible.

While taking guaifenesin:

  • Get plenty of rest.
  • Drink six to eight glasses of water to help flush out the toxins.
  • Eat healthy food, but not too much of it.
  • Visualize your mitochondrial factories and their dirty smokestacks. Then visualize them running cleanly, with the free flow of energy restored.
  • Pay attention to your posture.
  • Lay down for 5 minutes a few times a day if possible--with a cold pack on your neck, if it helps.
  • Listen to soothing music.
  • Laugh as much as you can. Laughter triggers electrical impulses in brain, to secrete natural tranquilizers and painkillers to help you through reversal.
  • Stretch.
  • Get a massage.
  • Meditate.
  • Take 15-20 minute warm baths, not hot.

    You are under stress, and going through the trauma of change and rebalancing. Baby yourself. With many people, guaifenesin therapy can result in remission of symptoms. It is not a cure.

    When your symptoms are in remission, and you have resumed activities, it is time to try cutting down or stopping your other medications. Try this only after discussing it with your doctor. When you are symptom-free and medication-free, slowly start to taper the guaifenesin.

    At one point, your symptoms may reappear. That means that you have at least one perpetuating factor. You may need a maintenance dose of guaifenesin to help you eliminate excess phosphates, just like some diabetics need insulin. Most of us didn"t notice FMS/MPS symptoms until they became overwhelming. Take heart. Your symptoms will lessen, long before all deposits disappear.

    Guai has another rather beneficial side effect. At least 3 ladies on guai had previous breast implants, and all of them had developed hard capsules around the implants. Guai therapy eliminated, or at least minimized, the capsules.

    This leads me to another theory. If implant capsules form readily on people with FMS, do similar capsules form around bursae--the sacs which hold fluid in the joints? This would account for some of the pain and stiffness, and some of the climate affects. The guai might minimize them as well. The double blind study on guaifenesin at Oregon Health Sciences University, under the auspices of Robert Bennett M.D., was concluded in June. The results are in data tabulation.

    7. Cranio Sacral Release Technique/FMS/MPS in Other Cultures

    CSR is a therapy technique which releases tightened, constricted tissue. Body fascia is a mobile, body-wide laminated sheath of connective tissue. CSR releases the bottled up tension in the fascia, and balances the system.

    Through the myofascial system, any injury or illness which results in contracture or swelling can affect the whole body. Areas of clinically significant change can produce fascial rigidity. Any kind of scarring or adhesion can create long-standing problems in the elasticity of myofascia. Postural dysfunction, athletic stresses, injuries and biochemical or electromagnetic imbalance will disrupt the myofascial balance.

    There is material in fascia called ground substance, which changes from solid to liquid, and healthy fascia has the ability to contract or relax. CSR is based on the premise that the inherent energy that causes motion is present in the unhealthy tissue, but it is fighting against restriction. Restrictions can result from adhesions, inflammation, infection, dysfunction, or neuroreflexes. When the restriction is loosened, it is called a release.

    The Japanese practitioners feel that the center of the FMS/MPS problem is "hara". Hara is the center of body strength--the abdominal area, between the rib cage and the pelvic bone. The kai, or ki--universal life force, comes from the hara. In Japan, they use shiatsu and acupuncture, and herbal remedies, as well as moxibustion and electrostimulation of trigger points. Reiki is a form of ki transfer.

    Many Native American tribes treat people with FMS/MPS symptoms with great respect. They are considered people with a special link to the spirit world, and they are consulted on many manners of importance.

    Illness is not a state of being but a process of transformation. You must surrender--there is no way out but through. Accommodate, and optimize life within your limitations. Use your "down time" wisely. You will eventually be restored to harmony. Your passage will give you a greater understanding of life, and a great deal of wisdom. They feel you should concentrate on the discomfort instead of ignoring it. Your body is trying to teach you something. It will continue until you learn. They emphasize creative dreaming and visualization.

    Chinese healers see FMS/MPS as a disturbance of qi, or chi, the universal life force. Proper breathing is the first requirement for Qi gong (called chi kung in the states), as well as for optimum health. Qi gong is the Chinese version of energy transfer, like the Japanese reiki.

    Most of us develop bad breathing habits when we are young. Breathing is an automatic function, so we take it for granted. Healthy little children breath well, but as we grow, we "unlearn" (not forget) how to breathe. You are breathing well enough to stay alive, but that doesn"t mean you are breathing for optimal health.

    Most adults use only a small portion of their lung capacity. Take a moment to consider your breathing. Is it deep, rhythmic and relaxed? If it is shallow, jerky or constricted, you need to learn better breathing habits to get the most out of exercise, and out of life.

    One of the first things that happens when you are frightened or angry is a change in the breathing rhythm. Your body tenses for the "fight or flight" stress reaction. With FMS/MPS, we are stuck in that stress reaction much of the time. Breath and stress are tied together. We have to help our bodies to relearn to relax. Breathing awareness is the key to this.

    Unfortunately, in this society, we pay more attention--and currency--for the way things are packaged than for the contents. We want to "look good", and we are taught how society defines "good". We are told to keep our bellies firm and pulled in, and breathe through our chest. We unlearn how to breathe. This kind of breathing is called "paradoxical breathing", and it worsens myofascial trigger points (TrPs).

    You can"t break the laws of nature without paying-- you develop a hunger for air that can cause you to gasp for breath at the slightest exertion. When you breathe through your mouth, your breath is shallow and rapid. This causes your body to struggle even harder for adequate oxygen.

    Many of us mouth-breathe at times and don"t even know it. When we breathe in, we must first fill the belly, then the middle chest, and at last fill the upper chest. Sometimes it is easier to start proper breathing when you are lying down. Lie down on your back, in a comfortable position. Try it.

    Place your hand on your belly, right below your navel, so you can tell what is happening. Take a deep breath through your nose and hold the breath in a few moments. If you have constricting garments, you may have to loosen them to take a really deep breath. This act alone will show you why constricting clothing can be detrimental to your body. You must allow the breath to flow free. Let your breath out slowly.

    When you think all of the stale air is out, open your mouth and breathe the rest of it out. Chances are there was quite a bit of stagnant air that was not being exchanged. Most of us fail to use the diaphragm muscle--the main muscle in our body devoted to the breathing process. This causes tension in our body, as well as shallow breathing.

    You have seen this muscle in the grocery store, or at least the bovine equivalent (London Broil). The diaphragm muscle forms the base of the chest area, and moves up and down with the breath. If our breath is shallow, we don"t use this muscle, and we keep some stagnant air in our lungs. Breathing "from the belly", using the diaphragm, gives our body more oxygen.

    In Qi gong, (pronounced "gee gung") there is the mundane "Qi"--the normal breath, and the "true Qi". True Qi is closer to "the Force" in Star Wars. True Qi is tangible in the hands of an adept practitioner.. Once you become adept, you can move it, and feel it moving in you and around you. It is an energy flow, and most of us are oblivious to it. Qi gongfu, called kung fu in the US, embodies time and quality of Qi gong exercise.

    Breathing correctly will help rid your body of waste gases. Utilized with Qi gung, it also massages some of your organs, and can improve your mental clarity and focus. By breathing mindfully, and consciously slowing and deepening your breath, you can relax and ease anxiety and stress.

    Did you try the deep breathing, or did you just read about it? If you were only reading, go back and try it for a few breaths. How did it feel? Strange? That should tell you something. It is time to pay attention when your body talks.

    Qi gung will improve your balance, and give greater elasticity to the myofascia--even in cases of severe FMS/MPS. It is safe even for those with hypermobile joints.

    It is important that the Qi gong be learned slowly and gradually. You cannot rush this. Contraction--and myofascial hardening, lumps and ropy bands prevent the free flow of Qi. Qi gong is over 3000 years old, and there are hundreds of Qi gong methods.

    You must not push, or try to force your body. It is important to first be able to sense and feel the Qi. This is not mental visualization, but an internal feeling. When Qi flows freely, there is no sensation. If you feel sensation, such as strength, electricity, or temperature changes, that is an indication of blockage.

    It is often said that the stronger the feel of strength, the weaker the Qi. Blockage causes sensation. Once you learn the correct body posture and correct mind posture for a Qi gong exercise, everything comes together. When the postures are correct, the chi will flow, and you will experience a connection with the Qi force.

    When you are "connected", you are in a meditative state, and will experience relaxed power. This will take time. It will come. Do not rush. You cannot force electricity through blocked circuits until the circuits are prepared to relay the force. So it is with Qi. As Qi flows, the body will open up in layers. You may have experienced similar openings during craniosacral release or similar body/mind therapy.

    With the loosening of the body, emotional release comes also, and this is a good sign. Qi gong is not a religion, nor a cult, nor is it just an exercise. It is a process of tranquility. It is a way understanding life, a bridge for the body, mind and spirit to connect with the universal life force. Go with it, and the "force" will always be with you.

    FIBROMYALGIA/MYOFASCIAL PAIN SYNDROME MEDICATIONS

    You may have to try many medications before you find the optimum ones for you. We react differently to each medication, and there is no "cookbook recipe" for FMS or MPS. What works well for one of us can be ineffective for another. A medication which puts one person to sleep may keep another awake. Each of us has our unique combination of neurotransmitter disruption and connective tissue disturbance.

    We need doctors who are willing to stick with us until an acceptable symptom relief level is reached. Medications which affect the central nervous system are appropriate for FMS/MPS. They target symptoms of sleep lack, muscle rigidity, pain and fatigue.

    Pain sensations are amplified by FMS,and so the pain of MPS pain is multiplied. FMS/MPS patients often react oddly to medications. It is the rule rather than the exception that a FMS/MPS patient will save strong pain meds from surgery or injury for when they REALLY need it--for an FMS/MPS "flare". This is a sign that your needs aren"t being met.

    I give you the following quotes. I hope you will pass them on to your doctor. They are from "PAIN A Clinical Manual for Nursing Practice", by McCaffery and Beebe.

    Health professionals "often are unaware of their lack of knowledge about pain control." "The health team"s reaction to a patient with chronic nonmalignant pain may present an impossible dilemma for the patient. If the patient expresses his depression, the health team may believe the pain is psychogenic or is largely an emotional problem. If the patient tries to hide the depression by being cheerful, the health team may not believe that pain is a significant problem."

    "Research shows that, unfortunately, as pain continues through the years, the patient's own internal narcotics, endorphins, decrease and the patient perceives even greater pain from the same stimuli." "The person with pain is the only authority about the existence and nature of that pain, since the sensation of pain can be felt only by the person who has it." "Having an emotional reaction to pain does not mean that pain is caused by an emotional problem."Pain tolerance is the individual's unique response, varying between patients and varying in the same patient from one situation to another." "Respect for the patient"s pain tolerance is crucial for adequate pain control.""THERE IS NOT A SHRED OF EVIDENCE ANYWHERE TO JUSTIFY USING A PLACEBO TO DIAGNOSE MALINGERING OR PSYCHOGENIC PAIN.""No evidence supports fear of addiction as a reason for withholding narcotics when they are indicated for pain relief. All studies show that regardless of doses or length of time on narcotics, the incidence of addiction is less than 1%."

    This book is so clear in its facts, and so well documented, I suggested that my local library buy it. They did. I wanted everyone in the area to have access to the information within. Once you read this book, you get a greater understanding of pain and pain medications, as well as coping mechanisms. Many non-pharmaceutical methods of pain control are also described thoroughly in this reference.

    It's normal to be depressed with chronic pain, but that doesn't mean depression is causing the pain. Maintenance with mild narcotics Darvocet, Tylenol #3, Vicodin-Lorcet-Lortab for nonmalignant (non-cancerous) chronic pain conditions may be a humane alternative if other reasonable attempts at pain control have failed. The main problem with raised dosages of these medications is not with the narcotic components, per se, but with the aspirin or acetaminophen that is often compounded with them. Narcotic analgesics are sometimes more easily tolerated than NSAIDs, the Non-Steroidal Anti-Inflammatory Drugs. Neither FMS nor MPS is inflammatory. Prolonged use of these narcotics may result in physiological changes of tolerance or physical dependence (withdrawal), but these are not the same as psychological dependence (addiction). Under-treatment of chronic pain of MPS/FMS results in a worsening contraction which results in even more pain.

    "Anti-anxiety" medications are not an indication that your symptoms are "all in the head". These medications don"t stop the alpha-wave intrusion into delta-level sleep, but they extend quantity of sleep, and may ease daytime symptom "flares". This meds list is only a partial list.

    Relafen(nambumetone):this is a NSAID that is often well tolerated because it is absorbed in the intestine, sparing the stomach.

    Benedryl:(dyphenhydramine): a helpful sleep aid/antihistamine which is safe in pregnancy. The starting dose is 50 mg 1 hr. before bed. Increase as tolerated until symptoms are controlled or 300 mgs. About 20% of patients react with excitation rather than sedation when taking benadryl. (non-prescription)

    Desyrel (Trazadone):a tricyclic antidepressant that helps with sleep problems. It must be taken with food.

    Atarax (hydroxyzine HCl):suppresses activity in some areas of Central Nervous System to produce an anti-anxiety effect. This antihistamine and pain-reliever may be useful when itching is a problem.

    Elavil (amitriptyline): this tricyclic antidepressant (TCA) is cheap and useful. It generates a deep stage four sleep. Most patients will adapt to this med after a few weeks. It can cause photosensitivity, water retention and morning grogginess. It often causes weight gain, dry mouth, as well as stopping the normal movements of the intestine. It may cause Restless Leg Syndrome.

    Wellbutrin (bupropion HCl):is a weak Specific Serotonin Reuptake Inhibitor (SSRI) and antidepressant that is sometimes used in FMS/MPS in place of Elavil. It can promote seizures.

    Ambien (zolpidem tartate):hypnotic--sleeping pill, for short-term use for insomnia. There have been reports of serious depression.

    Soma (carisoprodol):acts on Central Nervous System to relax muscles, not on the muscles themselves. It works rapidly and lasts from 4 to 6 hrs. It helps detach from pain, and modulates erratic neurotrans- mitter traffic, damping the sensory overload of FMS.

    Flexeril (cyclobensaprine):this medication can sometimes stop spasms, twitches and some tightness of the muscle. It is related chemically to Elavil. It generates stage four sleep, but it may cause gastric upset and a feeling of detachment from life.

    Sinequan (doxepin):}{\plain tricyclic antidepressant and antihist- amine. It can produce marked sedation. This medication may enhance Klonopin, but can reduce muscle twitching by itself.

    Prozac (fluoxetine hydrochloride):anti-depressant that increases the availability of serotonin, useful for those patients who sleep excessively, have severe depression and overwhelming fatigue.

    Ultram (tramadol):non-narcotic, Central Nervous System medication for moderate to severe pain, in a new class of analgesics called CABAs--Centrally Acting Binary Agents. It has a "low-abuse potential", so doctors may prescribe it more liberally than other strong pain-killers. It is not a controlled substance. Reports say it doesn"t work well on an "as needed" basis--you have to take it regularly for best benefits. Many people said it brought more alertness for longer times, and less "fibrofumble" of the fingers. It can lower the seizure threshold. It is having good success with migraines.

    Xanax:(alprazolam): an anti-anxiety medication, that may be enhanced by ibuprofen. It must not be used in pregnancy.It enhances the formation of blood platelets, which store serotonin, and also raises the seizure threshold. When stopping this medication, you must taper it very gradually.

    EMLA:a prescription-only topical cream, that may help cutaneous TrPs. It is a mixture of topical anesthetics.

    Pamelor (nortriptyline):this is used to help sleep. but some people find it stimulating, and must take it in the morning. Some reports of depression with use.

    Klonopin (klonazepam):anti-anxiety medication and anticonvulsive/ antispasmodic. It is useful in dealing with muscle twitching, Restless Leg Syndrome and nighttime grinding of teeth.

    Buspar (buspirone HCl):may improve memory, reduce anxiety, helps regulate body temperature, and is not as sedating as many other anti-anxiety drugs.

    Zoloft (sertraline):this is an SSRI and antidepressant, and is commonly used to help sleep.

    Tagamet, Zantac, Prilosec, Axid:often used to counter esophageal reflux. Tagamet may increase stage 4 sleep, and enhance Elavil.

    Paxil (paroxetine Hcl):serotonin and norepinephrine reuptake inhibitor, and may reduce pain. It should not be used with other meds that also increase brain serotonin. Suggested dosage is 10 mgs (half a scored tablet) mornings--may cause insomnia.

    Effexor (venlafaxine HCl):antidepressant and serotonin and norepinephrine reuptake inhibitor. Suggested trial dosage is 25 mg, taken in the morning. Food has no affect on its absorption. When discontinuing this medication, taper off slowly.

    Inderal(propranolol HCl):sometimes helps in the prevention of migraine headaches, although blood pressure may drop with its use. Antacids will block its effect, and should not be used.

    Hismanol(astemizole):this is a potent antihistamine often given for allergies. Do not take at the same time as ketaconazole.

    Librax:for Irritable Bowel Syndrome. It is a combination of antispasmotic plus tranquilizer that helps modulate bowel action.

    Diflucan (fluconazole):this antifungal penetrates all of the body"s tissues, even the Central Nervous System. Very short term use can be considered if cognitive problems and/or depression is present, and yeast is suspected. Yeast may also be at the root of irritable bowel, sleep dysfunction (muramyl dipeptides from bowel bacteria induce sleep), and other common FMS problems.

    Potaba (aminobenzoate potassium):used to diminish fibrotic tissue. Travell and Simons recommend it for stubborn cases of myofascial pain syndrome. Do not use with sulfa. The suggested dosage 500 mg tid for 5 months. It will counteract guaifenesin.

    Guaifenesin: see handout "Guaifenesin"

    Quotane:this topical prescription ointment is helpful for TrP relief in close-to-the-surface areas not reachable by stretching. TrPs that refer burning, prickling or lightning-like jabs of pain are likely to be found in cutaneous scars.

    Imitrex (sumatriptan):this is an injectable solution that will not prevent migraines, but it is effective for migraine pain in most cases. Works on serotonin release instead of blood vessel spasm, and may provide relief in less than 20 minutes. It works very fast, but should not be used within 24 hours of ergot (a common migraine drug) medications. It can increase blood pressure. It may cause spasm of muscles in jaw, neck, shoulders and arms. Also reported were tingling sensations, rapid heartbeat and the "shakes". A pill form of this may be approved soon.

    A FMS/MPS Reading List

    "Sick & Tired of Feeling Sick & Tired: Living With Chronic Invisible Illness" by Paul J Donoghue & Mary E. Siegel

    "Stretching" by Bob Anderson

    "Office Hours Day and Night" by Janet Travell, M.D. "Myofascial Pain and Disfunction: Trigger Point Manual Volumes I & II" by Janet G. Travell, M.D. and David G. Simons, M.D. (medical texts) }{\plain

    "Prescription for Anger", by Gary Hankins, Ph.D. and Carol Hankins

    "When Muscle Pain Won"t Go Away" by Gayle Backstrom and Bernard R.Rubin, D.O.

    "Job"s Body" by Deane Juhan

    "Nasty People: How to Stop Being Hurt by Them Without Becoming One of Them", by Jay Carter

    "Fibromyalgia: Fighting Back" by Bev Spencer and "Coping with\par }{\plain Fibromyalgia by Beth Ediger. LRH publications Box 8 Station Q Toronto, ON Canada

    "The Fibromyalgia Syndrome" by Mary Anne Saathoff RN, BSN POB 21988 Columbus, Ohio 43221\_0988

    "Fibromyalgia: Managing the Pain" by Mark J. Pelligrino MD Anadem\par 3620 N. High Street Columbus Ohio 43214

    "Advances in Research", Getting the Most Out of Your Medicines" "FMS/CFS in Young People" and "Fibromyalgia Network Newsletter" POB 31750, Tucson AZ 85751-1750 520-290-5508

    Coming Spring 1996:

    Starlanyl (MD), Devin and Copeland (MA, MS) Mary Ellen, Fibromyalgia and Myofascial Pain Syndrome: A Survival Manual. Oakland: New Harbinger, Spring 1996 ISBN 1-57-224-046-6.

    Williamson, Miryam Ehrlich. Fibromyalgia: A comprehensive approach. What you can do about chronic pain and fatigue. New York: Walker & Co., Spring 1996. ISBN 0-8027-7484-9.

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