# is there a brochure to explain FM to relatives,etc



## celticlady (Aug 6, 2001)

Hi,I was wondering if there is any type of brochure or info specifically for Fibromyalgia ,kinda like "mollies brochure" for ibs...I need one for FM because I was just recently diagnosed,suspected I had it for years,you know,same old story,MDs dismissed my sx and didnt get correct diagnosis until recently.It would help to explain to healthy people why I "look so good" but feel so bad on some days!thanks.Beth


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## moldie (Sep 25, 1999)

Hi celticlady. The Arthritis Association puts out a pamphlet that you may be able to get from a Rheumatologist. Otherwise, The Fibromyalgia Network may have info on their website that may be more geared to what you are looking for rather than the clinical aspect of it. Good luck. I know what you mean!M.


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## celticlady (Aug 6, 2001)

Thanks,Moldie!


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## starcatcher (Apr 1, 2000)

Letter to people without FMS and/or MPS:Having FMS/MPS means many thingschange, and a lot of them areinvisible. Unlike having cancer or being hurtin an accident, most people do not understand even a little about FMS/MPSand its effects, and of those that think they know, many are actuallymis-informed. In the spirit of informing those who wish to understand ...... These are the things that I would like you to understand aboutme beforeyou judge me...- Please understand that being sick doesn't mean I'm notstill a humanbeing. I have to spend most of my day in considerable pain andexhaustion,and if you visit I probably don't seem like much fun to be with,but I'mstill me stuck inside this body. I still worry about school andworkand my family and friends, and most of the time I'd still like tohearyou talk about yours too.- Please understand the difference between"happy" and "healthy". Whenyou've got the flu you probably feel miserablewith it, but I've beensick for years. I can't be miserable all the time, infact I work hardat not being miserable. So if you're talking to me and Isound happy,it means I'm happy. That's all. It doesn't mean that I'm not ina lotof pain, or extremely tired, or that I'm getting better, or anyofthose things. Please, don't say, "Oh, you're sounding better!". I amnotsounding better, I am sounding happy. If you want to comment onthat, you'rewelcome.- Please understand that being able to stand up for tenminutes,doesn't necessarily mean that I can stand up for twenty minutes, oranhour. And, just because I managed to stand up for thirty minutesyesterdaydoesn't mean that I can do the same today.With a lot of diseasesyou're either paralyzed, or you can move.With this one it gets moreconfusing.- Please repeat the above paragraph substituting, "sitting","walking", "thinking", "being sociable" and so on ... it appliestoeverything. That's what FMS/MPS does to you.- Please understand thatFMS/MPS is variable. It's quite possible (forme, it's common) that one dayI am able to walk to the park and back,while the next day I'll have troublegetting to the kitchen. Pleasedon't attack me when I'm ill by saying, "Butyou did it before!", ifyou want me to do something then ask if I can. In asimilar vein, Imay need to cancel an invitation at the last minute, if thishappensplease do not take it personally.- Please understand that "gettingout and doing things" does not makeme feel better, and can often make meseriously worse. Telling me that I need a treadmill, or that I just need toloose (or gain) weight, get this exercise machine, join this gym, try theseclasses... mayfrustrate me to tears, and is not correct... if I was capableof doing these things, don't you know that I would? I am working with mydoctorand physical therapist and am already doing the excercise anddietthat I am suppose to do. Another statement that hurts is, "You justneed to push yourself more, exercise harder..." Obviously FMS/MPS dealsdirectlywith muscles, and because our muscles don't repair themselves thewayyour muscles do, this does far more damage than good and could resultinrecovery time in days or weeks or months from a single activity. Also,FMS/MPS may cause secondary depression (wouldn't you get depressed if youwere hurting and exhausted for years on end!?) but it is not created bydepression. - Please understand that if I say I have to sit down/liedown/takethese pills now, that I do have to do it right now - it can't beputoff or forgotten just because I'm out for the day (or whatever).FMS/MPSdoes not forgive.- If you want to suggest a cure to me, don't. It'snot because I don'tappreciate the thought, and it's not because I don'twant to get well. It's because I have had almost every single one of myfriends suggestone at one point or another. At first I tried them all, butthen I realized that I was using up so much energy trying things that Iwasmaking myself sicker, not better. If there was something that cured,oreven helped, all people with FMS/MPS then we'd know about it. This isnot adrug-company conspiracy, there is worldwide networking (both onand off theInternet) between people with FMS/MPS, if something workedwe would KNOW.-If after reading that, you still want to suggest a cure, then do it,butdon't expect me to rush out and try it. I'll take what you said and discussit with my doctor. In many ways I depend on you - people who are not sick -I need you tovisit me when I am too sick to go out... Sometimes I need youhelp mewith the shopping, cooking or cleaning.I may need you to take me thethe doctor, or to the physical therapist. I need you on a different leveltoo ... you're my link to the outsideworld... if you don't come to visit methen I might not get to see you.... and, as much as it's possible, I needyou to understand me.============= http://www.sover.net/~devstar/ ======FIBROMYALGIAFIBROMYALGIA IS BECOMING well-known as a condition that researchers believe may be related to chronic fatigue syndrome. Possibly in response to stress, lack of sleep, an injury or infection, or another trauma or disease, your muscles begin to ache. Pain might develop gradually and affect a wide area, or it may come on suddenly and sharply in specific areas. You might feel burning, stiffness, shooting pain, or an overall throbbing sensation. The soreness can center on the shoulders, the hip or upper thigh muscles, or the elbows and knees.Perhaps fibromyalgias most distinguishable feature is that the aches are often accompanied by anxiety, depression, fatigue, or an inability to sleep. Doctors often call the sleep disturbances nonrestorative sleep-you may be able to drop off, but when you wake you don't feel rested. In fact, you may be even more fatigued.Symptoms of fibromyalgia may worsen during periods of stress, overexertion, trauma, extreme temperature, infection, or emotional crisis. Although the disorder isn't dangerous or life-threatening, it can be very disruptive. Curiously, it is seldom seen outside of Western industrialized countries, leading researchers to theorize that lifestyle or dietary factors may play a role. But theories are all that's available so far; no one yet knows what causes this disease.Unfortunately, fibromyalgia is easily mistaken for other kinds of pain. But anti-inflammatory drugs such as naproxen and ibuprofen seldom lessen fibromyalgia pain. Pharmaceutical sleep aids can further diminish the quality of sleep and they can cause dependence. Low doses of antidepressants may help relieve some sleep disturbance symptoms and decrease pain. Occasionally, doctors may administer injections of local anesthetics or corticosteroids directly into the painful spots.DRUG TREATMENTTricyclic AntidepressantsAmitriptyline (Endep, Elavil, Halcion), imipramine (Tofranil,Janimine) Fuction: relieve muscle pain and promote sleep. Side effects: sleepiness, tremor, blurred vision, constipation, weight gain, and withdrawal symptoms.EATING TO EASE THE PAINMany holistic practitioners believe that diet plays a role in causing fibromyalgia, though they're not quite sure how or why. Their recommendations:. Drink plenty of fluids, especially freshly squeezed vegetable and fruit juices, for their antioxidant content. Carrot juice is highly recommended because it's particularly packed with beta carotene.. Eat plenty of green leafy vegetables.. Eat small meals throughout the day rather than large infrequent ones.. Keep your digestive system moving by eating high fiber foods or taking a fiber supplement.. Avoid red meats, shellfish, fatty foods, and acidic foods such as tomatoes and vinegar. Also avoid white potatoes, green peppers, and eggplant. Limit or completely avoid foods that are high in hydrogenated or saturated fats.. Eliminate caffeine and alcohol and greatly reduce sugar consumption.. Investigate your own food allergies. If you think certain foods may worsen your symptoms, try doing without them and note what happens. Selective Serotonin Reuptake Inhibitors (SSRIs)Fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil). Functionrevent the metabolism of the mood-controlling brain chemicalserotonin, thus increasing the amount of this neurotransmitter available to the brain and reducing pain symptoms. Side effects: anxiety, nervousness, insomnia, gastrointestinal distress, blunting of emotionalresponse.SUPPLEMENTS FOR FIBROMYALGIAThe following supplements are designed to nourish muscle cells and enable them to use energy more efficiently through better oxygenation. They also control inflammation and depression and promote more restful sleep.. NADH (N icotinamide adenine dinucleotide-hydrogen). This compound helps control pain and muscle spasms. Typical dosage: 5 to 10 milligrams each morning on an empty stomach; take with 6 to 8 ounces of water.. Malic acid and magnesium. These two chemicals help muscles use glucose properly. Together, they may help reduce fibromyalgia symptoms. Typical dosage: 300 milligrams of malic acid and 200 to 300 milligrams of magnesium, both three times per day.. 5-HIP (5-Hydroxy-tryptophan). Studies have found this compound helps decrease the pain and insomnia of fibromyalgia by increasing serotonin levels. Typical dosage: 50 to 300 milligrams per day.. SAM-e (S-adenosylmethionine). This new compound is being hailed as a natural antidepressant. But clinical studies show that it can also reduce fibromyalgia pain and elevate mood. Because depression can occur with fibromyalgia, this supplement may be worth a try. Typical dosage: 200 to 1,600 milligrams per day.. Coenzyme Q10. This enzyme helps boost oxygen supplies to muscle tissue, helping it to flush inflammatory chemicals more quickly. Typical dosage:60 to 400 milligrams per day.HERBAL REMEDIESGrapeseed Extract (Vitis vinifera)>From the seeds of wine grapes come powerful antioxidant and natural anti-inflammatory compounds called procyanidins. They've been used to treat everything from varicose veins to poor night vision. For people with fibromyalgia, these compounds help to inhibit the inflammatory response, the chemical reactions responsible for pain and soreness. Typical( dosage: 50 to 30C) milligrams of oligomeric procyanidins (OPCs) per day. You may want to start with a higher dose to saturate cells and then taper down to a lower dose.Devil's Claw (Harpagophytum procumbens)The analgesic and anti-inflammatory properties of this herb make it a favorite for fibromyalgia. It also boosts digestion, helping your body absorb nutrients better, which improves overall health. Typical dosage:200 to 800 milligrams per day of a root extract containing 1 .5 percent harpagoside content. Caution: Do not use devil's claw if you have gastric or duodenal ulcers, or if you're pregnant or nursing. If you have heart disease, use the herb only under a doctor's supervision.White Willow Bark (Salix alba)This bark has been used for over a thousand years to relieve pain. Salicin, aspirin's forerunner, is white willow's active constituent. Apart from its ability to ease pain, salicin reduces inflammation, but unlike aspirin, it will not thin the blood or irritate the stomach. Typical dosage: up to six 400-milligram capsules per day; or 3 cups of tea per day (steep > to 1 teaspoon of powdered hark in 1 cup of hot water for U) to 15 minutes); or follow the manufacturer's recommendations.Ginkgo (Ginkgo biloba)This best-selling medicinal herb brings more oxygen to muscle cells when they're under stress. Ginkgo is also a powerful antioxidant. Compounds called ginkgolides inhibit a specific body chemical involved in inflammatory disorders. Typical dosage: 60 to 1 80 milligrams per day of product standardized to 24 percent flavone glycosides.Cayenne (Capsicum spp.)Creams containing capsaicin, the scuff that makes peppers hot, can help relieve pain and boost circulation to tender muscles. Such creams work because the capsaicin is a counterirritant, meaning the heat you feel distracts your brain from the pain signals that other nerves are sending. Typical dosaqe: capsaicin creams vary in their strength; read the labels carefully and compare percentages of capsaicin content. Begin with a medium to low strength (depending on your own sensitivity) and work up; follow the manufacturer's recommendations on how frequently to apply. Caution: Do not apply close to the nose, mouth, eyes. or other sensitive areas; thoroughly wash your hands with soap after each application.St.-John's-wort (Hypericum perforatum)Studies have found that this herb, now famous for easing mild to moderate depression, can also help treat sleep disorders. it is especially good at promoting longer periods of deep sleep, which is exactly what people with fibromyalgia need most. Typical dosage: up to 900 milligrams of an extract containing 0.3 percent hypericin per day, in divided doses. Caution: If you are already taking other antidepressants, consult your doctor before beginning to take St.-John's-wort. May cause increased skin reactions to sun exposure.============= http://www2.rpa.net/~lrandall/index.html ========Hope this helps!


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## celticlady (Aug 6, 2001)

Thank you,starcatcher,this is Great!!!!!


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## JenS (Dec 18, 2000)

http://www.tidalweb.com/fms/guide.shtml


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