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I have had it for 9 years and it has progressed, but I have never met anyone, yet, who truly comprehends how it makes me feel...anyone out there who has gone through the same???

2007-01-15 04:45:50 · 6 answers · asked by EvelynMine 7 in Health Diseases & Conditions Other - Diseases

6 answers

I was originally diagnosed with FMS and chronic fatigue syndrome in 1993, and the FMS, especially, has gotten progressively worse since then. I haven't been able to work outside the home since 2000, and lost job after job before then. To make things worse, my daughter was diagnosed with FMS in early 2000 as well, when she was just 9 years old. So yes, I think it's fair to say that I understand. I'm sorry that you're experiencing this nastiness, too.

As for Mr. Cut & Paste Whackjob up there - doesn't it just make you crazy when some twit thinks that the number of words is supposed to substitute for actually having READ THE QUESTION and answered it? Growl!

Anyway - I feel like I should have added something about what HAS helped, but when I was answering last night it was late and I was pretty beat.

For my girl, she had been dancing all her life, and she was able (thank all that's holy!) to keep it up. We took FMS really seriously from day one, and I went on a crusade to find a doctor who would do so, and got her decent treatment.

As long as she keeps moving, she does fairly well. She catches everything that comes around, unfortunately, and is easily injured (she's incredibly hypermobile - many people with hypermobile joints have FMS, and building muscle around the joints to support them is the only thing that helps). She tires all too easily, and has been diagnosed with restless leg disorder. She also developed severe migraines. All of those, as you probably know, are commonly comorbid with FMS.

But by keeping the stress levels in her life down, controlling her allergen exposure carefully, being draconian about her sleep schedule (including one or two naps a day - not easy during high school!), and having her drink as much filtered water as I can get into her, she doesn't have to take any pain meds stronger than ibuprofen as needed. She takes a bunch of other meds (sigh), but no other pain meds.

I ignored the FMS for years, trying to "tough it out." I insisted that if I could get past the fibro fog AND get some sleep, I'd handle the pain. Well, I learned the hard way if you try to tough things out with the pain, your nervous system can get more out of whack, making you MORE hypersensitive and causing you to experience ever more pain! Ain't that lovely? And as a result, your sleep gets worse, you're more fatigued, and the fog is much, much worse.

After I couldn't work at all, couldn't keep house, and wasn't doing a very good job homeschooling my daughter (she's only returned to "school" this year, thanks to improved health and sheer stubborness - my partner took up a lot of the slack for me), I was finally beaten with the universe's clue stick to the extent that I sought out real care. I went to a pain management clinic, but only after I ruthlessly reduced the stress in my life, simplified everything, decluttered my home, reduced allergens, and sought care for other health problems.

The other steps are vital, but decent pain relief was key for me. Morphine might knock other people out, but after the first day, it has given me clarity of mind that I hadn't experience in years. It cannot relieve all of the pain - nothing can. But it pushes it back so that I can hear myself think!

The fatigue is still there, even though I take Provigil twice a day. I have a few good hours of brain time a day. I still can't work outside the hosue, but I can take online classes (only online - I tried "going" to school, but getting to the classes and just being there wore me out too much for handling the assignments).

Morphine isn't for everybody, nor will every doctor (even pain specialists) be willing to prescribe it to every patient. I'm on a time-release version, plus an immediate-release version for breakthrough pain. I take muscle relaxants and other meds, too. This stuff can't touch the neuropathic pain I still experience, or the migraines, or many of the other FMS problems - but it makes daily life POSSIBLE.

Good luck to you!

2007-01-15 14:52:38 · answer #1 · answered by TechnoMom 3 · 0 0

I've had it since 1995. I understand what you go through every day because i go through it too.

There are some life-experiences where if someone hasn't been through it, no explanation is possible; if they have, no explanation is necessary.

Fibromyalgia is and is not one of these things. Other people with chronic health conditions will be more likely to understand the things that we go through not because they have the same experiences, but because they also have their own things that they go through that people don't generally understand.

Pain is, by its very nature, an isolating thing: no one else can feel the pain that we are experiencing at that exact moment (whether it's a chronic pain or a stubbed toe). Some are easier to empathize with than others. Most people have stubbed their toes at one time or another. Not many people in their 20's and 30's have had to ask for help with pouring milk on their own cereal, or ask someone to open a jar for them, or to help them pick up because they can't bend over that day. I've had to learn how to swallow my pride and ask my husband to do things for me because i'm just not able to do them myself. That's something that most people don't have to go through.

I've found that the Spoon Theory ( http://www.butyoudontlooksick.com/the_spoon_theory ) is a marvelous way to explain to healthy folks just what it's like to live with chronic pain.

Best of luck to you... hope you feel better (even if it's just for a few minutes) soon. Be sure to enjoy those little moments where it hurts less. They're precious in their own way.

2007-01-16 08:12:24 · answer #2 · answered by squidpiggy 2 · 1 0

I hear you loud and clear! I have had it since 1997. My husband and kids still don't understand. People don't understand the daily headaches, the up and down of the pain intensity, the fuzzy head somedays, the stiffness, the chronic fatigue....etc! I get so angry sometimes! I went back to school for my last 2 semesters and I had to give up my job because I just couldn't do both things. I used to ride my bike for miles, hike in the mountains, camp...I can't do that anymore. People seem to think that since we look ok that we just need to buck up. UGH! I really would like to raise public awareness. People need to be educated in what we go through. I would love to show them what the pain feels like, but it is illegal to run them over with a truck. Oh well, I guess we just have to keep on going and hope that someday they will find us some help and people will understand. Good luck! Contact me if you would like, we can at least be our own support group! sandya46@charter.net

2007-01-15 04:58:45 · answer #3 · answered by Sandy A, RN 3 · 0 1

Nobody understands. But, I have been taking Cymbalta and it has truly helped with my pain. I don't have those "knots" in my forearms and terrible leg pains since I started it. It is the ONLY thing that has worked for me. I still have it and hurt especially when the weather is changing but I am a lot better.
Have you been here? http://www.fibromyalgiachat.com/forums/index.cfm?start=1851&b=FM
You can get some good advice, some bad. You will also hear about worse problems than we have.

2007-01-15 05:18:03 · answer #4 · answered by Anonymous · 1 0

I do, because I suffer from it....last Sept., I collapsed and ended up in the hospital....upon furter testing, it was found that I have a profound Vitamin D Deficiency, which mimics the symptoms of Fibromyalgia....I would suggest that you have a 25 (OH)D test done.....to check for this deficiency....Drs rarely check this...having your Calcium level checked is not a reliable indicator of deficiency.....I am now on massive doses of Vit D...PLEASE, do not self treat, as Vit D can be toxic...you should be monitored by a professional....good luck!`

2007-01-15 05:03:37 · answer #5 · answered by grammycrist4 1 · 1 0

Fibromyalgia (FM or FMS) is a chronic syndrome (constellation of signs and symptoms) characterized by diffuse or specific muscle, joint, or bone pain, fatigue, and a wide range of other symptoms. It is not contagious, and recent studies suggest that people with fibromyalgia may be genetically predisposed. It affects more females than males, with a ratio of 9:1 by ACR (American College of Rheumatology) criteria. Fibromyalgia is seen in 3% to 6% of the general population, and is most commonly diagnosed in individuals between the ages of 20 and 50. The nature of fibromyalgia is not well understood; some physicians believe that it may be psychosomatic or malingering. However, a new study reported in the National Fibromyalgia Association Newsletter, suggests a strong dopamine link. There are few, if any, treatments available. Although there is no cure, the disease itself is neither life-threatening nor progressive, though the degree of symptoms may vary greatly from day to day with periods of flares (severe worsening of symptoms) or remission.

History
Fibromyalgia has been studied since the early 1800s and referred to by a variety of former names, including muscular rheumatism and fibrositis. The term fibromyalgia was coined in 1976 to more accurately describe the symptoms, from the Latin word fibra, meaning fiber, myo, meaning muscle, and the Greek word algos, meaning pain.

Fibromyalgia was first recognized by the American Medical Association as a "true" illness and the cause of disability in 1987. In an article the same year, in the Journal of the American Medical Association, a physician named Goldenberg called the syndrome Fibromyalgia.


Symptoms
The primary symptom of fibromyalgia is widespread, diffuse pain, often including heightened sensitivity of the skin (Allodynia), tingling of the skin (often needlelike), achiness in the muscle tissues, prolonged muscle spasms, weakness in the limbs, and nerve pain. Chronic sleep disturbances are also characteristic of fibromyalgia, and some studies suggest that these sleep disturbances are the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness. REM sleep is seldom reached.

Many patients experience "brain fog", also known as "fibrofog", exhibiting abnormally slow brain waves and cognitive deficits. Many experts suspect that "brain fog" is directly related to the sleep disturbances experienced by sufferers of fibromyalgia. It is not unusual for patients to experience extended periods (two hours or more) of sleep inertia.

Other symptoms often attributed to fibromyalgia (possibly due to another comorbid disorder) are chronic paresthesia, physical fatigue, irritable bowel syndrome, genitourinary symptoms (such as those associated with the chronic bladder condition interstitial cystitis), dermatological disorders, headaches, myoclonic twitches, and symptomatic hypoglycemia. Although it is common in people with fibromyalgia for pain to be widespread, it may also be localized in areas such as the shoulders, neck, back, hips, or other areas. Many sufferers also experience varying degrees of temporomandibular joint disorder. Not all patients have all symptoms.

Fibromyalgia can start as a result of some trauma (such as a traffic accident) or major surgery (usually hysterectomy[citation needed]), but there is currently no known strong correlation between any specific type of trigger and the subsequent initiation of fibromyalgia. Symptoms can have a slow onset, and many patients have mild symptoms beginning in childhood, such as growing pains. Symptoms are often aggravated by unrelated illness or changes in the weather. They can become more tolerable or less tolerable throughout daily or yearly cycles; however, many people with fibromyalgia find that, at least some of the time, the condition prevents them from performing normal activities such as driving a car or walking up stairs. The syndrome does not cause inflammation as is presented in arthritis, but anti-inflammatory treatments, such as Ibuprofen and Iontophoresis, are known to temporarily reduce pain symptoms in some people.

Variability of Symptoms
The following factors are said to temporarily increase the suffering of patients:

Cold weather, especially when damp
Changes in atmospheric pressure (such as with the onset of a cold front)
Malnutrition, hunger, or starvation
Physical activity
Lack of deep (REM) sleep
Increase of stress

Diagnosis
When making a diagnosis of fibromyalgia, a practitioner would take into consideration the patient's case history and the exclusion of other conditions such as endocrine disorders, arthritis, and polymyalgia rheumatica. There are also two criteria established by The American College of Rheumatology for diagnosis:

A history of widespread pain lasting more than three months — widespread as in all four quadrants of the body, i.e., both sides, and above and below the waist.
Tender points — there are 18 designated possible tender points (although a person with the syndrome may feel pain in other areas as well). During diagnosis, four kilograms-force (40 newtons) of force is exerted at each of the 18 points; the patient must feel pain at 11 or more of these points for fibromyalgia to be considered. Four kilograms of force is about the amount of pressure required to turn fingernails white or to feel pain sensations on the forehead. This technique was developed by the American College of Rheumatology as a means of confirming the diagnosis for clinical studies. It is also used in the United Kingdom. Pressure on nearby areas rarely elicits any reaction. Fibromyalgia patients also have elevated levels of Substance P in the body, which increases the levels of pain and intensity.
However, it should be remembered that this diagnostic criteria was originally established as an inclusion criteria for a research study and was not then intended for general diagnosis. The number of tender points that invoke a response can vary as the condition flares and eases. Patients have also been known to start off having Fibromyalgic symptoms in only one half of their body. The tender point test also depends on a good medical practitioner and good communication between doctor and patient: if the doctor misses the tender point site, then a false negative reponse could be noted; the doctor might not apply the right level of pressure to the tender point; if the patient has some tender points that hurt less than other points they might not mention them even if they do hurt; and some doctors do the test without telling the patient to say when it hurts, so if the patient conceals when some points hurts then a false negative response could be noted.

Objective Tests
Rheumatologists have known for some time that many people with fibromyalgia (and the closely related chronic fatigue syndrome) have abnormal autonomic function, especially with respect to cardiovascular health. The tilt table test (a test of cardiovascular fitness) has been used in the past as an adjunct to diagnoses. Additionally, recent studies have indicated a correlation between fibromyalgia and dysautonomia. Specifically, one study found that patients who had been diagnosed with fibromyalgia had a significantly less variable heart rate over a 24 hour period than the control group. This may indicate that the autonomic nervous systems of FMS sufferers are less adaptive to external stressors than those of healthy people.

Complete workup by a neurologist is suggested, including tilt table, catecholamine testing, autoimmune markers such as ANA and Rheumatoid-factor test (RA), nerve conduction studies including EMG, as well as AChR antibodies and circulating immune complexes including Cd3 and Cd4. PET and SPECT scans may be helpful as indicators for empirical evidence. B12 deficiency and endocrine issues should also be reviewed. Immunological testing, such as IgG, IgM, and IgA levels, are suggested.

Treatment
As with many other soft tissue and rheumatolgical organic disorders, there is no cure for fibromyalgia. However, there is increasing interest and research which has led to improvements in treatment. Treatment ranges from symptomatic prescription medication to alternative and complementary medicine.

One experimental treatment is the use of the Guaifenesin Protocol, developed by Dr. R. Paul St. Amand. Because of the large number of patients improving on Guaifenesin, there are now several doctors throughout the U.S. who are using the Guaifenesin protocol in their practices. Guaifenesin is an ingredient in some decongestants. However, the Guaifenesin protocol has not been proved in proper research studies.

Another treatment being researched is the use of dextromethorphan, which is sold over the counter as a cough suppressant.

Another treatment protocol developed by Dr. John Brimhall, a chiropractor from Mesa, Arizona, focuses on treating all different aspects of the body together. Nutrition, particularly for the adrenal glands, and healing nutrients for the digestive and hormonal systems are used in conjunction with emotional balancing techniques and detox therapies.

Low doses of antidepressants like amitriptyline and trazodone may be used to reduce the sleep disturbances sometimes associated with fibromyalgia and are believed by some practitioners to help correct sleep problems that may exacerbate the symptoms of the condition. Because depression often accompanies chronic illness, these antidepressants have additional psychological benefits for patients suffering from depression. Amitriptyline is often favoured as it can also have the effect of providing relief from neuralgenic or neuropathic pain. Some doctors advise against using narcotic sleep aids ("hypnotics"), since these can actually disrupt deep sleep in some patients.

Normal doses of newer anti-depressants (SSRI's) like Celexa are being used. Anti-seizure drugs are sometimes also used.

New drugs showing significant efficacy on fibromyalgia pain and other symptoms include milnacipran, gabapentin, meloxicam and pregabalin. Milnacipran belongs to a new series of drugs known as serotonin-norepinephrine reuptake inhibitors (SNRIs), and is currently available in parts of Europe where it has been safely prescribed for other disorders. As of August 2005, Milnacipran is the subject of a Phase III study, and, if ultimately approved by the FDA, will be distributed in the United States.

Studies have found gentle exercise, such as warm-water pool therapy, improves fitness and sleep and may reduce pain and fatigue in people with fibromyalgia. Stretching is recommended to allay muscle stiffness and fatigue, as is mild aerobic exercise. Because strenuous activity can exacerbate the muscle pain and fatigue already present, patients are advised to begin slowly and build their activity level gradually to avoid inducing additional pain. Exercise may be poorly tolerated in more severe cases with abnormal post-exertional fatigue.

Cognitive behavioral therapy has been shown to improve quality of life and coping in fibromyalgia patients and other sufferers of chronic pain.EEG Biofeedback has also shown to provide temporary and long-term relief.

Many patients find temporary relief by applying heat to painful areas. Those with access to physical therapy and/or massage may find them beneficial. Chiropractic care can also help relieve pain due to fibromyalgia.

A holistic approach, including managing diet, sleep, stress, activity, and pain is used by many patients. Dietary supplements, massage, chiropactic care managing blood sugar levels, and avoiding known triggers when possible means living as well as it is in the patient's power to do.

Treatment for the "brain fog" has not yet been developed, however biofeedback and self-management techniques such as pacing and stress management may be helpful for some patients. The use of anti-depressants, which improves sleep, helps some patients.

A number of practitioners are attracted to the treatment of fibromyalgia, especially because its cause has yet to be identified, and due to its permanent nature, ongoing treatments can be very profitable. While this interest may promote legitimate medical research, patients should be wary: treatments of dubious validity exist in the meantime.

Living with fibromyalgia
Fibromyalgia can affect every aspect of a person's life. While neither degenerative nor fatal, the chronic pain associated with fibromyalgia is pervasive and persistent. FMS can severely curtail social activity and recreation, and as many as 30% of those diagnosed with fibromyalgia are unable to maintain full-time employment. Like others with disabilities, individuals with FMS often need accommodations to fully participate in their education or remain active in their careers.

In the United States, those who are unable to maintain a full-time job due to the condition may apply for Social Security Disability benefits. Although fibromyalgia has been recognized as a condition, along with chronic fatigue syndrome, by the government, applicants are often denied benefits. However, most are awarded benefits at the state judicial level; the entire process often takes two to four years.

In the United Kingdom, the Department for Work and Pensions recognizes fibromyalgia as a condition for the purpose of claiming benefits and assistance.

In India, the position with reference to this condition is unclear. However, where the person is rendered incapable of maintaining a regular life due to any disability, he/she can claim disability benefits. Indian laws guarantee that discrimination against people with disabilities is a violation of their individual rights.

Fibromyalgia is often referred to as an "invisible" illness or disability due to the fact that generally there are no outward indications of the illness or its resulting disabilities. The invisible nature of the illness, as well as its relative rarity and the lack of understanding about its pathology, often has psychosocial complications for those that have the syndrome. Individuals suffering from invisible illnesses in general often face disbelief or accusations of malingering or laziness from others that are unfamiliar with the syndrome.

There are a variety of support groups on the Web that cater to fibromyalgia sufferers. Some are offered at the bottom of this article.

Theories on the cause of fibromyalgia
The cause of fibromyalgia is currently unknown. Over the past few decades, many theories have been presented, and the understanding of the disorder has changed dramatically. Most current theories explain only a few symptoms of the disorder and are thus incomplete.

Dopamine abnormality
Dopamine is a neurotransmitter that is now known to play a role in Parkinson's disease and likely plays a role in fibromyalgia, as well as restless leg syndrome. Pramipexole, a drug that stimulates dopamine receptors and is used to treat Parkinson's disease, has been shown to have a positive effect on fibromyalgia and restless legs syndrome. Because dopamine is very difficult to measure, it could explain why sufferers of fibromyalgia do not show a pattern of abnormal results in other medical tests that do not measure dopamine. Even in Parkinson's disease, dopamine is not measured, but the link is now accepted.

The National Fibromyalgia Association (NFA) recently released a report referencing a January 2007 Journal of Pain article which reports that fibromyalgia patients' brains are "different" in dopamine levels, as revealed during PET-scans.


Serotonin Excess
Serotonin is a neurotransmitter that is known to play a role in regulating sleep patterns, mood, feelings of well-being, concentration, digestion. One hypothesis of the pathophysiology fibromyalgia causation is an disregulation of serotonin and norepinephrine in the neural synapse, contributing to many associated fibromyalgia symptoms. Some patients treated with SSRI's (especially Celexa) have shown improvement in these areas.

The drug Cymbalta, originally used to treat depression, has been used successfully in treating fibromyalgia off-label. Cymbalta has not been approved by the FDA for fibromyalgia.

On October 19 2006, Eli Lilly issued a press release stating they had done trials which found Cymbalta, 60 mg once or twice daily, significantly reduced pain in more than half of women treated for fibromyalgia (FM), with and without major depression, according to 12-week data presented at the annual meeting of the American College of Rheumatology. Eli Lilly is in Phase III of its FM trials and is expected to submit a supplementary new drug application (sNDA) to the FDA for approval of Cymbalta for FM within the next 12 months.

Critics argue that randomized controlled trials of FM are difficult due to factors such as a lack of understanding of the pathophysiology and a heterogenous FM patient population. Although there is a lack of understanding of what causes FM, it is estimated that approximately 5-7% of the U.S. population has FM, representing a large patient clientele. Eli Lilly hopes Cymbalta will be the first FDA approved medication for FM and had been promoting Cymbalta for FM since 2004.

In the study testing the efficacy of Cymbalta for FM, participants completed several questionnaires to measure the amount of pain and discomfort the disease caused them at the beginning of the study, and then at the end of each of the first two weeks and every second week for the remaining 12 weeks of the study. Researchers also tested the participants for depression.

Women who took Cymbalta had significantly less pain and discomfort than those who took the placebo. For men, who made up only 11 percent of the study, there was no effect from taking the medication compared with a placebo. Reportedly, depression played no part in whether or not the drug worked to control pain. The change in the level of women's pain was particularly pronounced after a month of taking the drug, then leveled off a bit before dropping again near the end of the study.

However, in one of the primary measures of pain there was no significant difference between the two groups at the end of the 12-week trial. Also, because the trial lasted only 12 weeks, it is impossible to tell how well the drug would control treatment for a longer period of time. Lastly, the primary researcher on the project has received more than $10,000 in consulting fees from Eli Lilly, the manufacturer of Cymbalta, all other researchers also had ties to the company, reflecting a conflict of interest.

For information on Cymbatla and FM you can visit the following site: "Role of Cymbalta in Fibromyalgia," Health-Care-Information.org


Sleep disturbance
The sleep disturbance theory postulates that fibromyalgia is related to sleep quality. Electroencephalography (EEG) studies have shown that people with fibromyalgia lose deep sleep. Circumstances that interfere with "stage 4" deep sleep (such as drug use, pain, depression, serotonin deficiency, or anxiety) appear to be able to cause or worsen the condition.

According to the sleep disturbance theory, an event such as a trauma or illness causes sleep disturbance and, possibly, some sort of initial chronic pain. These initiate the disorder. The theory supposes that "stage 4" sleep is critical to the function of the nervous system, as it is during that stage that certain neurochemical processes in the body reset. In particular, pain causes the release of the neuropeptide substance P in the spinal cord, and substance P has the effect of amplifying pain and causing nerves near the initiating ones to become more sensitive to pain. Under normal circumstances, this just causes the area around a wound to become more sensitive to pain, but, if pain becomes chronic and body-wide, then this process can run out of control. The sleep disturbance theory holds that deep sleep is critical in order to reset the substance P mechanism and prevent this out-of-control effect.

An interesting aspect of the sleep disturbance/substance P theory is that it explains "tender points" that are characteristic of fibromyalgia but which are otherwise enigmatic, since their positions don't correspond to any particular set of nerve junctions or other obvious body structures. The theory posits that these locations are more sensitive because the sensory nerves that serve them are positioned in the spinal cord to be most strongly affected by substance P. The theory also explains some of more general neurological features of fibromyalgia, since substance P is active in many other areas of the nervous system.

Critics of the theory argue that it does not explain slow-onset fibromyalgia, fibromyalgia present without tender points, or patients without heightened pain symptoms, and a number of the non-pain symptoms present in the disorder.

Also of interest is a possible connection between this theory and the theory that chronic fatigue syndrome and post-polio syndrome are due, at least in part, to damage to the ascending reticular activating system of the reticular formation. This area of the brain, in addition to apparently controlling the sensation of fatigue, is known to control sleep behaviors and is also believed to produce some neuropeptides, and thus injury or imbalance in this area could cause both CFS and sleep-related fibromyalgia, explaining why the two disorders so often occur together.


Deposition disease
Another theory involves phosphate and calcium accumulation in cells that eventually reaches a level to impede the ATP process, possibly caused by a kidney defect or missing enzyme that prevents the removal of excess phosphates from the blood stream. This theory posits that fibromyalgia is an inherited disorder, and that phosphate buildup in cells is gradual (but can be accelerated by trauma or illness). Calcium is required for the excess phosphate to enter the cells. The additional phosphate slows down the ATP process; however the excess calcium prods the cell to continue producing ATP.

Diagnosis is made with a specialized technique called mapping, a gentle palpitation of the muscles to detect lumps and areas of spasm that are thought to be caused by an excess of calcium in the cytosol of the cells. This mapping approach is specific to deposition theory, and is not related to the trigger points of myofascial pain syndrome.

While this theory does not identify the causative mechanism in the kidneys, it proposes a treatment known as guaifenesin therapy. This treatment involves administering the drug guaifenesin to a patient's individual dosage, avoiding salicylic acid in medications or on the skin, and, if the patient is also hypoglycemic, a diet designed to keep insulin levels low.

The phosphate build-up theory explains many of the symptoms present in fibromyalgia and proposes an underlying cause. The guaifenesin treatment, based on this theory, has received mixed reviews, with some practitioners claiming many near-universal success and others reporting no success. Only one controlled clinical trial has been conducted to date, and it showed no evidence of the efficacy of this treatment protocol. This study was criticized for not limiting the salicylic acid exposure in patients, and for studying the effectiveness of only guaifenesin, not the entire treatment method. As of 2005, further studies to test the protocol's effectiveness are in the planning stages, with funding for independent studies largely collected from groups which advocate the theory.


Fibromyalgia as severe TMS
Another theory is that fibromyalgia is a severe form of Tension myositis syndrome (TMS) which is a mindbody disorder popularized in the books on healing back, neck, and other limb pain by Dr. John E. Sarno of the Howard A. Rusk Institute of Rehabilitation Medicine. Briefly the theory is that in many cases chronic pain is the result of physical changes (primarily mild oxygen deprivation) caused by the brain through the autonomic nervous system as a strategy for distracting you from painful or dangerous unconscious emotions such as repressed anger. Treatment is through a program of education and attitude change which stops the brain from using that chronic pain strategy. Psychotherapy is suggested in the minority of cases where education alone is not sufficient.


Other theories
Other theories relate to various toxins from the patient's environment, viral causes such as the Epstein-Barr Virus, growth hormone deficiencies possibly related to an underlying (maybe autoimmune) disease affecting the hypothalamus gland, an aberrant immune response to intestinal bacteria,neurotransmitter disruptions in the central nervous system, and erosion of the protective chemical coating around sensory nerves. Due to the multi-systemic nature of illnesses such as fibromyalgia and chronic fatigue syndrome (CFS/ME), an emerging branch of medical science called psychoneuroimmunology (PNI) is looking into how the various theories fit together.


Comorbid diseases
Cutting across several of the above theories is a theory that proposes that fibromyalgia is almost always a comorbid disorder, occurring in combination with some other disorder that likely served to "trigger" the fibromyalgia in the first place. This concept fits especially well with the sleep disturbance theory.

By this theory, some other disorder (or trauma) occurs first, and fibromyalgia follows as a result. In some cases, the original disorder abates on its own or is separately treated and cured, but the fibromyalgia remains. This is especially apparent when fibromyalgia seems triggered by major surgery. In other cases the two disorders coexist. This theory would explain why such a wide variety of symptoms are often ascribed to fibromyalgia, since there are potentially a wide variety of comorbid disorders. It also helps explain why fibromyalgia is so hard to treat, since the fibromyalgia is unlikely to abate while the comorbid condition is untreated.


Skepticism
Some physicians still do not believe that fibromyalgia is an actual symptom complex. They claim that the symptoms of fibromyalgia are manifestations of depression, along with symptoms of diseases such as chronic fatigue syndrome, Epstein-Barr syndrome, interstitial cystitis, irritable bowel syndrome, bacterial infection, and others. Fibromyalgia has also been called a "wastebasket" diagnosis, usually meaning that the doctor does not acknowledge real pathology or consistent disease. This should not be taken to mean that fibromyalgia itself does not exist, but rather it underlines the importance of distinguishing between patients who have true fibromyalgia and those that have been misdiagnosed. Few medical authorities still believe that depression and psychological factors (like hypochondria) are the root cause of the syndrome. While antidepressants have helped some patients with fibromyalgia, they are neither a cure nor even a very effective treatment. Fibromyalgia is often present in patients without depression and for those patients with depression, depression may begin after the onset of fibromyalgia. Furthermore, fibromyalgia is not cured when depression is successfully treated or when other stressors are removed. However, some doctors still believe that fibromyalgia is caused by psychological factors:

"This isn't a disease, it's merely a description of symptoms... We've taken stress, psychosocial distress and pain and the ordinary life experiences some people have and turned them into something they're not -- a physical illness"
-- Dr. Fred Wolfe, a skeptical Rheumatologist who helped define the disease earlier in his career.
However, new research has provided a blood test for the syndrome, and some pathological abnormalities have been discovered.

"Recent genetic findings suggest that specific gene mutations may predispose individuals to develop Fibromyalgia.

In addition, neurobiological studies indicate that Fibromyalgia patients have abnormalities within central brain structures that normally encode pain sensations in healthy pain-free controls."''

2007-01-15 05:08:41 · answer #6 · answered by Lupo Cattivo 2 · 0 2

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