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    • CommentAuthorGspot
    • CommentTimeNov 28th 2007

    Fibromyalgia is a legitimate and common entity. It is a cyclic and progressive illness manifested by multiple symptoms that may last only a few days in the early stages but later are present continuously. The disease eventually affects multiple areas and bodily systems until patients simply cycle from bad to worse. There are no diagnostic laboratory tests for fibromyalgia.

    Patients parade from one doctor to another and are often told that they have chronic fatigue, systemic candidiasis, myofascial pain, irritable bowel or vulvar pain syndrome. Physicians focus on symptoms germane to their specialty and often fail to perceive the much larger problem. Grouping a few symptoms while ignoring others leads to a medical dead end and incorrect diagnoses. The above-listed entities are actually symptoms of a much larger problem.

    The American Academy of Rheumatology recommends searching for tender points from eighteen predetermined sites on the body to make a definitive diagnosis of fibromyalgia. So-called “chronic-fatigue” patients simply have higher pain thresholds. For this reason they do not complain of body aches or stiffness but focus mainly on their fatigue and cognitive impairments. Since pain perception varies greatly, we urge physicians to seek objective evidence instead of the purely subjective response to variably tender points. The confirmation of fibromyalgia is far more secure when using our method of palpation that we call mapping (see below).

    Fibromyalgia has no set symptoms and many combinations from the following list are interwoven:

    Central Nervous System: Fatigue, irritability, nervousness, depression, apathy, listlessness, impaired memory and concentration, anxieties and suicidal thoughts. Insomnia and frequent awakening due to pain result in non restorative sleep.
    Musculoskeletal: Pain and generalized morning stiffness could arise from muscles, tendons, ligaments and fascia of the shoulders, neck, entire back, hips, thighs, knees, ankles, feet, inner and outer elbows, wrists, fingers, and chest. Injured or old operative sites are commonly affected. Though fibromyalgia is described as a “non-articular” disease many know better: Joint pains with or without swelling, redness and heat are frequent. The litany includes foot or calf cramps, numbness and tingling of the face or extremities.
    Irritable Bowel: (Often called leaky gut, spastic colon or mucous colitis). Symptoms include nausea (often brief, repetitive waves), indigestion, gas, bloating, pain, cramps, constipation alternating with diarrhea and sometimes mucous stools.
    Genitourinary: Common are pungent urine, frequent urination, bladder spasms, burning urination (dysuria) with or without repeated bladder infections and interstitial cystitis. Vulvodynia (vulvar pain syndrome) includes vaginal spasms, irritation of the vaginal lips (vulvitis) or opening (vestibulitis) and painful intercourse (dyspareunia). It typically mimics a yeast infection but without the cottage-cheese discharge. Intense PMS and uterine cramping are common. Symptoms of fibromyalgia are worse premenstrually.
    Dermatological: Various rashes may appear with or without itching: Hives, red blotches, itchy bumps or blisters, eczema, seborrheic or neurodermatitis, and rosacea. Nails are often brittle and of poor quality and hair falls out prematurely. Strange sensations are common such as cold, heat (especially palms, soles and thighs), crawling, electric vibrations, prickling, super-sensitivity to touch, and flushing that is sometimes accompanied by sweating.
    Head, Eye, Ear, Nose, and Throat: Headaches (migraines), dizziness, vertigo (spinning) or imbalance; dry eyes as well as itching and burning with or without sticky or crusty discharge upon awakening; blurred vision; nasal congestion and post-nasal drip; painful, burning tongue, mouth and abnormal tastes (scalded, bad or metallic); ringing in the ears (tinnitus) or lower-pitched sounds; ear and eyeball pain; sensitivity to light, sounds and odors.
    Miscellaneous Symptoms: Weight gain; low grade fever; lowered immunity to infections; morning eyelid and hand swelling from fluid retention that gravitates to the lower extremities by evening where it stretches tissues causing the restless leg syndrome.
    Hypoglycemia Syndrome: This is a separate entity. Thirty percent of female and twenty percent of male fibromyalgics suffer both conditions (fibroglycemia). Symptoms greatly overlap those of fibromyalgia, but sugar craving accompanied by tremors, sweating, anxiety, panic attacks, heart pounding, faintness, and frontal headaches, especially if hunger induced, are solid clues to the diagnosis. Hypoglycemics must follow a prescribed diet or recovery will not be complete even with the reversal of fibromyalgia. (See Hypoglycemia for more information.)
    Trauma, infection or stress can aggravate or tip susceptible individuals into fibromyalgia but are not the basic causes. It is generally accepted now as an inherited disease. We have treated family members that spanned three generations including four two-year-olds as well as patients who became symptomatic only in their seventies. This age spread strongly suggests a multi-genetic disease in various combinations. Boys and girls suffer equally in the pre-puberty but females predominate (85% to 15%) thereafter. Though some gene-carrying men have few or no symptoms, inheritance is possible from either parent. The cyclic accumulation of symptoms begins earlier than patients suspect but can be elicited with a careful history. Forty percent of our patients, for example, recall "growing pains" in childhood that disappeared during the true growth spurt of puberty. Untreated fibromyalgia ultimately leads to a "tartar of joints" that we recognize as osteoarthritis.
    • CommentAuthorTEDDY
    • CommentTimeNov 28th 2007
    Hi Gspot

    This is very interesting about fybromyalgia. I didnt really know anything about it until reading your posting other than doctors here in UK as far as I beleive do not take it seriously.

    I have lots of the symptoms but then symptoms can relate to so many things but no-one has ever suggested to me that my symptoms could be fybromyalgia.It is amazing that if they have all these symptoms listed that there is no test known to be able to test for this.

    Interesting posting Gspot. I will read over it a few times and thanks for posting this.
    Take care
    • CommentAuthorRita
    • CommentTimeNov 29th 2007
    Hey G, it seems apparent that fibromyalgia and ss are related and perhaps one in the same. Several articles I have read have made the same assumption. The Guanfasine protocol eliminates salicylates in addition to taking that supplement. So, perhaps it is not so much taking the supplement, but lowering the sal levels that is working for those who believe they have fibromyalgia.
    • CommentAuthorTeefee61
    • CommentTimeOct 13th 2008
    I don't believe that ss and fibromyalgia are the same thing. Even if all people with fibromyalgia have ss, not all ss people have fibromyalgia, like me. It could be that different types of disfunctional metabolic systems have common elements.
    • CommentAuthoramandahv37
    • CommentTimeOct 28th 2008
    I looked online for various sal-free recipes and found some that claim to be sal-free and to help fibromyalgia, so presumed there was some kind of link.
    • CommentAuthorTeefee61
    • CommentTimeOct 28th 2008
    There is a link, but it's complex. See the work done by Robert Loblay (look on the Flaxseed thread).
    • CommentAuthorTeefee61
    • CommentTimeOct 28th 2008
    See also
    • CommentAuthorq-ki
    • CommentTimeJan 30th 2009
    I was diagnosed with fibromyaglia more than 10 years ago, and have many of the problems listed above. I started the guai protocol about 5 year ago and went sal-free in my personal products about 4 years ago as required by the guai protocol. I improved, but not enough. It wasn't until I went sal-free with my food 5 months ago that I saw a big improvement in all my problems, esp. digestive problems. I now wonder if I was just mis-diagnosed, and I am really just ss. It is a mystery. Even my very poor ciruculation has improved, the texture of my whole body is changing. I expect that the 'trigger points' of pain throughout my body that are so typical of fibromyaglia will clear in the next year, if I stay sal-free on all levels.
    • CommentAuthorlindyd
    • CommentTimeJan 31st 2009
    Hi q-ki
    Myalgia is a symptom of ss and also sulphite problems. I had bad myalgia before I went low sal and sulphite free a year ago..
    It is strange that treatment for fibromyalgia suggests that sufferers should go sal free in personal products but not with foods...sals are taken into the bloodstream through digestion as well as through the skin...
    Pleased to hear you are improving..
    Love Lindy xx
    • CommentAuthorq-ki
    • CommentTimeFeb 1st 2009
    Hi Lindy,

    I agree. I while on the sal-free personal product program I always had a nagging voice in the back of my head "Why can't I have (insert random fruit or plant material) in my shampoo, but I am allowed to eat (insert random fruit or plant material)?' It seemed like a very odd split, and had bothered me for years. When I found this website I was shocked and terrified and happy. I am glad I have a more complete picture.

    About sulphites...I have seen a number of posts about this...where are they typically found? What does sulphite sensitivity look like? (Not that I want to restrict my diet even more, but my symptoms are not 100% resolved)

    • CommentAuthorlindyd
    • CommentTimeFeb 2nd 2009
    Hi q-ki
    The symptoms of sulphite sensitivity are very similar to salicylate sensitivity....the two sensitivities are very closely related and if someone has one there is quite a strong chance they have the other ( BUT not everyone has so no-one should assume) so if anyone is still getting symptoms AFTER lowering sals then it is worth investigating sulphites...
    They are present in almost all "processed" foods and anything containing processed corn or corn syrup will definintely contain sulphites....they are used as a preservative (metabisulphite) and used during the bleaching process of "white" products such as flour and used as a cleaning wash for a lot of machinery (sulphur dioxide) ..sulphur is also in the air from traffic fumes (I live near a motorway).
    They are naturally in all of the "lily family" (eg onions/garlic/leeks etc) and all of the "cabbage" family (eg cabbage/cauli/sprouts etc). also in eggs, anything fermented, vinegars, especially wines,
    Asthma and chest/throat tightening/a cough are common symptoms.. however I am one of the rare people who don't get the asthma.. but I do get the throat chest tightening... Hives, feeling of cold/chill/ digestive problems/ very bad gas pains .. headache.. I get a very distinctive feeling like I have been hit across the back of the head with something very hard if I accidentally ingest or breath in too much sulphite or sulphur.
    the best way to avoid sulphite is to totally avoid anything processed (eat natural, wholegrain and preferably organic), avoid onions/garlic and other lily family foods, cabbage, cauli and cabbage family foods, eggs, anything pickled, fermented with vinegar, gelatine, cheese, chocolate (sorry).
    Cutting out sulphites as well as sals does restrict the diet considerably so I would not advise anyone to do this until they have established first if sals resolves their symptoms due to the risk of malnutrition as some of the low sal foods are high sulphite :-(
    I make sure I take a multinutrient (Quest) to help with the lack of nutrients.
    Love Lindy xx
    • CommentAuthorq-ki
    • CommentTimeFeb 2nd 2009
    Hi Lindy. is interesting, many of those things I don't eat any way. I do eat eggs, and cheese, and grape nuts (I was so excited to find a sal-free cereal, as I used to be the biggest cereal eater on the planet).

    I just added whole grain rice cakes, and I am not sure about them yet....they seem to make me crave them a little too much.

    Sulphite sensitivity sounds like a big pain. I am sorry to hear that you have experienced these symptoms.

    I am just wondering, how long did it take for your symptoms to clear? I have been on the diet 5 months, and I can feel my body very slowly returning to normal. Some of my symptoms cleared very quickly, others seem like they may take a year to clear or longer, at the current rate.
    • CommentAuthorlindyd
    • CommentTimeFeb 2nd 2009
    Hi q-ki
    I would say it took nine or ten months before I began to feel anything like "normal" kinda slowly creeps up on you and one day I suddenly thought "gosh I feel quite well""..
    Some symptoms have not gone away.. I have not got rid of the nasal congestion.. it is still there at a lower level..
    I still get itching bouts and fatigue if I overdo the sals or try something new..I am beginning to push my boundaries a bit more now and do end up with mild reactions from time to time...(or even bad ones if I do something silly like shampoo my carpet!!)
    However generally I feel well now and my body does not hurt any more and I can think clearly again :-)
    Love Lindy xx
    ps I eat tons of organic rice cakes.. I think I must keep Kallo in business :-)
    • CommentAuthorq-ki
    • CommentTimeFeb 3rd 2009
    wow 9-10 months...that isn't very far away.

    that is the best news I have heard in a very long time.

    Also amazing to hear that you are able to ingest some sals. That is beautiful beyond words. I just hope I can get beyond the crazy smell sensitivity I am having. It is driving me into a life of hermithood.

    Thank you!
    Fibromyalgia: A Review of Its Pathophysiology and Drug Treatment
    Linda L. Krypel... 2009
    The objective of this article is to review the literature related to the pathophysiology of fibromyalgia and the drug therapy used to treat this disease. Fibromyalgia, the second most frequently diagnosed rheumatological disorder, has complex interrelated pathologies that must be addressed to achieve effective symptom control. Central and peripheral sensitization along with neurotransmitter abnormalities play a major role in defining the symptoms associated with this disease. Drug therapy must be multifaceted because no single drug addresses all pathologies. Drug and nondrug therapies showing strong-to-moderate effectiveness should be used to obtain the most benefit.

    Alternative Medical Interventions Used in the Treatment and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia
    Nicole S.Porter... 2010
    Several types of alternative medicine have some potential for future clinical research. However, due to methodological inconsistencies across studies and the small body of evidence, no firm conclusions can be made at this time. Regarding alternative treatments, acupuncture and several types of meditative practice show the most promise for future scientific investigation. Likewise, magnesium, l-carnitine, and S-adenosylmethionine are nonpharmacological supplements with the most potential for further research. Individualized treatment plans that involve several pharmacological agents and natural remedies appear promising as well.
    • CommentAuthorJtoz54
    • CommentTimeAug 29th 2012
    THis makes me laugh..Fibromyalgia.....They dont know what causes it, Theres no test for it , and theres no cure for it.
    20 years ago I was diagnosed with it. Most of my symptoms went away 5 years ago when I went low sal.

    Like Rita said, they tell you to take Guaifenesin, the ingredient in Mucinex that thins mucous, but you must reduce sals in your toiletries so it doesnt block the effects of the Guai. One has to wonder if just reducing the sals is whats really helping.

    I still get knots in my neck and shoulders. I still have very tender spots in the trigger points of the body. But maybe thats just because we cant possibly remove all salicylates, chemicals and fumes that we are sensitive to. Joan