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Fibromyalgia Experiences

Below are some things that have been helpful to me as a person with fibro. Of course, please consult a trained professional before using anything, especially if you are pregnant, taking other meds, or have other complicating conditions in addition to fibro. This includes herbal supplements and teas, which a lot of people seem to think of as perfectly harmless and existing in a vacuum, but which actually interact with your body and with other meds/supplements just like "Western medicine's" meds do. Also, as a sidenote, I do not make any money off of any of the specific brand names I have mentioned; I simply mention things that have worked for me.

** indicates something that I have personally found especially helpful for me. I can't repeat enough, different things work best for different people.

helpful hints for people with fibro

vitamins & other supplements:
  • For supplements & related products, you can contact the wonderful family-based company To Your Health, Inc. One of its owners has fibro, and they publish a catalog and a newspaper. They are specifically dedicated towards raising awareness of FMS, CFIDS, chronic pain, & related issues. I am sure that your business would be much appreciated by them. To contact them and ask to receive the free catalog and/or newspaper, either call them at (800) 801-1406 or send a postcard to them at To Your Health, Inc., 11809 Nightingale Circle, Fountain Hills, AZ 85268.
  • B-complex vitamin: The B vitamins are helpful for combating stress. I take these for that and for helping with apathy and depression. Also purported to help strengthen the immune system. These are great for people with fibro & related conditions! Best taken with food. (If you are taking chlorella, you most likely don't need to take this, because chlorella contains all the B vitamins. The B-vitamins can all also be found in most multivitamins.) Can be found in almost all drug stores and health food stores.
  • magnesium supplement: A lot of people in "Western" societies are lacking in daily magnesium intake today. People with chronic illnesses in particular often become even more depleted in magnesium. Interestingly, according to what I have read in some books, the symptoms of magnesium deficiency are similar to the symptoms of CFIDS. Magnesium and calcium are somewhat dependent upon each other, so if you are lacking in one, you are most likely lacking in the other. Taking them together is especially beneficial because of their dependency. This supplement can be found in most drug stores and health stores. (I take it as part of a multi-mineral supplement.)
  • gingko biloba supplement: Gingko is an antioxidant that also improves blood circulation, especially to the brain, which helps improve cognitive functioning. One of the miswirings in fibro patients is a lower blood circulation to the brain than "normal," and so this is a great supplement for fibro patients to take. It is also supposed to be helpful for other head-related problems, such as headaches, tinnitus, and dizziness. Gingkos are the oldest living trees on earth. Can be found in almost all drug stores and health stores.
  • co-enzyme Q10 supplement (or "coQ10"): I've not actually taken this myself yet, as it tends to be pretty expensive and my budget is pathetically skimpy, but this is another good thing for fibro patients to take for the same reason as gingko -- it improves circulation to the brain. Can be found in most health stores and many drug stores.
  • ** chlorella is a freshwater single-celled green algae. It's a detoxifier that is largely protein (including all the essential amino acids) and also has a large amount of beta carotene and chlorophyll, all of the B-vitamins, several other vitamins, and a number of minerals. Furthermore, it is helpful in relieving gastro-intestinal disorders and helping reduce infections, low blood sugar, and anemia, among other things. Overall, it's just a really, really good thing for CFIDS/fibro/MCS patients to take. Can be found in most health stores and some drug stores. (If you are taking this, you probably don't need to take a B-complex vitamin also.)
  • iron supplement: I take this for borderline anemia. I've found that a decent number of people with fibro are also anemic or nearly anemic -- which makes sense, as again, deficiency in this mineral tends to cause fatigue. Also best taken with food. Can be found in most health stores and drug stores. (Again, I take this as part of a multi-mineral supplement. Taking chlorella also provides some iron.)
  • ** malic acid: I recently had the pleasure of talking with a health store employee that has CFIDS. She said that malic acid is supposed to greatly help people with chronic fatigue, which I'd also read elsewhere. I've yet to try it, but some of her friends have been pleased with their results. Update: I've read a few different places that malic acid is especially effective when taken with a magnesium supplement. Update: I have found this to be quite helpful.
  • ** acidophilus: L. acidophilus is a "friendly bacteria" that is supposed to be in abundance in the gastro-intestinal tract. Unfortunately, in most modern Westerners, it is greatly depleted. It tends to be especially depleted in the chronically ill, particularly people with chronic gastro-intestinal problems. There are supplements of l. acidophilus available. A book I read suggested that it is by far the most potent in supplements with over one billion cells per serving. L. acidophilus is also found in yogurt, and you can regularly eat yogurt instead of, or in addition to, taking a supplement of it. As a sidenote, antibiotics kill all the bacteria in you, not just the "hostile bacteria," so if you are taking antibiotics, it's especially important to try to restore the friendly bacteria inside of you.
  • ** multi-mineral supplement: A supplement containing many minerals helps provide extra minerals if you aren't sure what ones you're lacking in, or if you're lacking in several. It's also obviously more cost-efficient than buying several different single-mineral supplements by themselves.
  • ** bromelain: Bromelain is a natural supplement made from pineapples. My primary care physician, believe it or not, recommended it to help with my chronic sinus infections, allergies, and asthma. I am really impressed with how well it seems to work. The clerk at the health store I bought it at said that taking it with quercitin is often especially helpful, particularly for people with asthma (although I haven't tried that yet).
  • ** enzyme supplement: Many people with fibromyalgia are lacking in some of the enzymes. Enzymes are the building blocks of life, and enzyme depletion can cause a wide range of symptoms, many of which are common in people with fibromyalgia and CFIDS. A book that I read argued that if you take an enzyme supplement, you should be sure that it has all the major enzyme groups in it; they are analyze, protease, and lipase. There are enzyme supplements available especially to help with digestion if you have digestive problems. However, personally, I have found taking a (non-digestive) enzyme supplement on an empty stomach to be especially helpful. If you take them on an empty stomach, they don't go to work on digestion and can be in your bloodstream within fifteen minutes, working on repairing the damage that is caused by the constant strain of chronic illness. As a sidenote, the more under control my gastro-intestinal problems get, the less I find myself needing the enzyme supplement. It is nice.
  • ginseng-complex supplement: Ginseng is an herb that purportedly helps boost energy levels and alleviate fatigue. I usually take two ginseng-complex supplements daily. Can be found in most drug stores and health stores.
  • ** antioxidant supplement: Antioxidants help scavenge the body for free radicals, which are all kinds of destructive molecules that can get loose in the body, especially in people with chronic illnesses (because their body is constantly under stress from the chronic pain). You can buy individual antioxidants, and there are also a multitude of supplements that contain many of the antioxidants. (Personally, I take a supplement containing several of them.) Vitamins A, C, and E are also powerful antioxidants.
  • echinacea and goldenseal supplement: Echinacea is purportedly akin to an herbal antibiotic, a potent herb, but also losing its effect after a while if taken daily. Therefore, I usually take echinacea when I feel myself at the start of a minor illness/infection, or when my immune system is more depleted than usual for some other reason. Goldenseal has similar uses and is often sold together with echinacea in pills and teas. Can be found in almost all drug stores and health stores. Another combination others have told me works well is echinacea with garlic, which apparently also comes in pill form, but is harder to locate, at least where I live.
  • ** garlic supplement: Garlic functions on a similar principle as echinacea, helping strengthen the immune system. Garlic helps boost natural killer cells in particular (which are lower than "normal" in most fibro patients). It also helps get rid of infections and functions as an anti-oxidant. I eat raw and cooked garlic in meals, which is supposed to have the same effects as taking a garlic supplement. Can be found in almost all health stores and drug stores. (I've started taking an anti-oxidant supplement that includes some garlic.)
  • ** milk thistle: Milk thistle is an amazing herb for detoxifying and regulating the liver; it contains silymarin, which can act as an antioxidant. The livers of many people with chronic illnesses have become overloaded. Especially in people with illnesses like fibro, CFIDS, and MCS, toxins may have built up in the liver and may actually be making you sicker. Milk thistle helps to get them out of the liver and out of your body. Milk thistle also stimulates the production of new liver cells and helps prevent damage to the liver. In addition, it helps protect the kidneys and help against adrenal disorders, inflammatory bowel disorders, and problems with weakened immune systems. Can be found in most drug stores and health food stores.
  • dandelion has been recommended to me as a detoxifier (in any form -- supplement, tea, etc.). Toxins are frequently trapped in the systems of people with fibro/CFIDS/MCS. Can be found in many drug stores and health stores. It is especially helpful if taken in conjunction with milk thistle.
  • Chromium helps stabilize blood sugar levels, for many people with fibro/CFIDS have hypoglycemia (low blood sugar). [I have read some information recently that chromium picolate, the most common form of it, might not be good to take as a supplement, though.]
  • grapeseed supplement has also been recommended to me as an immune booster and cleanser, but I've yet to try it. Can be found in many health food stores.
  • There are a plethora of other suggestions for supplements for patients to take. Check out books and websites and experiment on which work best for you.
  • As an important sidenote, some supplements can react badly with or counter the effects of other supplements if taken together. If you are taking multiple supplements, please take the time to research this, or you may simply be throwing your money away at best or actually further damaging your body at worst.

pills & such to have handy:

  • ** Tums is always good for me to have around because I have IBS in addition to fibro. A lot of other kinds of stomach-relief medicines have detrimental properties as well; for example, many of them kill off the beneficial gastro-intestinal bacteria in addition to helping relieve gastro-intestinal distress (which, ironically, in the long-term actually exacerbate gastro-intestinal distress). As far as I know, Tums is the best over-the-counter medicine in this regard.
  • Buffered aspirin is also good to have handy. It's buffered so that it doesn't upset your stomach, and it doesn't have as much damaging effect as a lot of other painkillers. It's not good to take regularly though because it thins your blood to the point where, after having taken it daily for a long time, sometimes people have had difficulty getting cuts to stop bleeding. I know that a lot of people with fibro are like me--oftentimes over-the-counter medicine hardly touches their more severe pain. That's why it's important to find a sympathetic, well-read doctor that is willing to prescribe prescription painkillers to chronic illness patients, and knows the research well enough to know which ones work for fibro and CFIDS (since a lot of painkillers, both over-the-counter and prescription, disrupt sleep).
  • ** Motrin: Recently I have discovered the wonders of Motrin, an ibuprofen painkiller that for some reason tends to help my own pain more than other over-the-counter painkillers. I know some other people with fibromyalgia and other chronic pain conditions that it does nothing for, however. As a sidenote, ibuprofen painkillers are pretty good anti-inflammatory agents, but for them to be effective in that regard, you need to take at least 600 mg (typically three pills). Again, over-the-counter painkillers certainly don't always help me, especially when I have severe pain, but they help sometimes.
  • ** An extra sleeping aid such as melatonin or valerian, for nights when your major sleep med just isn't doing the trick (or if you don't take a major sleep med at all). Both melatonin and valerian have been used successfully by lots of people with little side effects, and both are way way less addictive than most over-the-counter sleeping pills. Personally, valerian has worked especially well for me, someone who is consistently unaffected by most meds that induce sleep in most people (including things like NyQuil and codeine). I take a valerian complex, which includes a lot of valerian and smaller amounts of kava kava and passionflower, which have also been shown to be calming herbs. Update: I recently read in The Fibromyalgia Times that, according to a recent study, people with fibro actually tend to have a surplus of melatonin instead of a deficit, and that taking melatonin supplements probably won't help us at all, and at worst may actually exacerbate our symptoms. This surplus of melatonin helps to explain why we feel sleepy and fatigued so often.
  • An allergy med such as Benedryl (the one that has worked the best for me), if you are like me and have allergies in addition to fibro (which a lot of PWFMS seem to have). My primary care physician has also given me an inhaler to help when I have particular difficulty breathing.
  • An expectorant such as Robitussin. These help to loosen up and clear out phlegm/etc. instead of simply temporarily suppressing it (like many other over-the-counter cold & cough medicines do).

teas and other hot beverages:

  • ** Caisse's Herbal Tea is about the most wonderful packaged herbal tea I've ever found. It's a tea to cleanse the system, and it has organic burdock root, sheep sorrel, slippery elm bark, and turkey rhubarb. I can't say enough good things about this tea. It was given to me as a gift, so I'm not sure where to get it, but I bet a lot of health food stores sell it. (Unfortunately the package doesn't include a complete address, or I'd put it here for you all.) Probably will taste more palatable with honey added (at least, it does to me).
  • Good Earth's Good Night Herbal Tea is a great-tasting, inexpensively-priced prepackaged tea to take in the evening to aid sleepiness. Also good to take during the day to calm down if you become stressed and/or upset. Can be found at a lot of grocery stores in some parts of the U.S., and in health food stores most other places in the U.S.; unsure if it is sold abroad.
  • ** Alvita's Scottish Throat Myste Herbal RemeTea is a great prepackaged tea to take for, well, sore throats. Again, will probably taste more palatable with honey. Can be found in a lot of health food and vitamin stores.
  • Stash's Premium Wild Raspberry Herbal Tea is another wonderful prepackaged tea to have handy, featuring a number of other herbs in addition to wild raspberry. This tea is especially great for when you have congestion or when women are experiencing cramping, etc. related to having their period. Can be bought at many grocery stores.
  • Peppermint tea (any brand) is an excellent tea to have around if you have IBS or another gastro-intestinal disorder. Even peppermint gum can help calm down an upset stomach or intestine.
  • Hot cocoa and/or hot cider are also good hot beverages to have handy for when you need or want to nurture yourself. If the kind of hot cocoa you drink has caffeine in it, though, I'd recommend against drinking it in the evening, for it could disrupt your sleep pattern.

other stuff to try:

  • Massage therapy--trade massages with a friend or go to a massage school and have one of the better students practice on you, or, if you can afford it or your insurance covers it, head to a professional masseuse. I recommend checking out the person and their techniques before paying; most professional masseuses are happy to show you around and talk with you on your first visit (usually for free).
  • Flower essences were something that I had heard about (from a friend and in some books), but never personally worked with, before I was diagnosed with fibro, etc. and then introduced to them by someone who visited my website and wrote me suggesting they might help with my health problems. Willing to try anything that might help me feel better, I've taken her suggestion and started out with Flower Essence Society's Yarrow Special Formula, formulated to help clear toxins out of the system. Flower Essence Pharmacy distributes most flower essence companies' essences (from a number of different countries). If you'd like to learn more about flower essences, start out with the New Bach Flower Therapies Website, which is in English, Deutch, and Italian (oy, I can't remember how to say "Italian" in Italian, sorry).
  • Aromatherapy has also been helpful to lots of people with chronic illnesses. You can put a small amount of the oil on your skin (wrists, behind ears, or back of neck are the best spots), and smell it all day, or you can put it onto a cotton ball or similar material and sniff it periodically throughout the day. Another way to do aromatherapy is to have an aromatic lamp that diffuses it through your home or office, or to burn incense. (Having allergies, I have found the former ideas more effective for me, personally, than the latter ideas, though.) There are several websites about aromatherapy. AromaWeb is a good website for beginners, and Guide to Aromatherapy is a useful listing of oils and their main properties for people who, like me, have used aromatherapy since before being diagnosed with fibro.
  • ** Tiger Balm: A friend with fibro & CFIDS recently introduced me to this stuff. It's amazing! It's a pain-relieving balm that you put directly on the place that hurts. It comes in cream and oil forms. She says the oil form has helped her far more than the cream form, but the cream helps me a lot (it's the only thing I've been able to find in my area, so that's good). The cream is carried in a lot of drug stores; the oil appears to be somewhat harder to find. Good for all chronic pain conditions (as well as people that strain their muscles in sports or other ways).
  • Camocare Pain Relieving Cream is similar to Tiger Balm and can also be found many places. It has the added benefits of the herb chamomile, too.
  • ** Qigong: This is a Chinese method of healing that is similar to Tai Chi, but not as movement-focused, which is obviously a good thing for those of us that get fatigued easily. Practiced daily, it is purported to help reduce anxiety, clear out blocked emotions, and possibly even lighten physical pain. It was recently recommended to me as being good for people that have trouble practicing more movement-focused forms of martial arts/etc. I've begun practicing (at the novice level, of course) recently and it has really been helping me feel better in my own opinion. My chronic horrible shoulder pains have even somewhat lessened for a period of time after I practice it each day.
  • ** Get an egg mattress pad to help you sleep more comfortably. These have been invaluable to me in helping me sleep, even before I was officially diagnosed with a sleep disorder. They typically cost $10-20US and are available at most stores that sell bedding and such. (I got my current one at Target.)
  • Biofeedback has been helpful to a lot of people, including people with fibro, though I've yet to try it myself. Check out this link, Biofeedback & Pain Center, as a starting-point for information if you are interested in learning more. As phrased on that site, "Biofeedback is a non-invasive, painless procedure by which you can control the brain and other biological functions. The key to the therapy is your use of unique strategies of conscious awareness to influence your brain and body. Brain waves, muscle tension levels, blood flow measurements may be monitored by the biofeedback specialist while you continually adjust your strategies of awareness until the desired control is achieved." The basic idea is that you can learn to consciously use your brain to help control your pain and stress levels. It's not an "all-in-your-head" thing, but rather an acknowledgement that our brains and the rest of our bodies influence each other.
  • ** If you have allergies and/or asthma, you might benefit from an allergen barrier pillow cover. I use Breathe Right brand's cover because that's the only one sold at the nearest drug store, and it seems to work very well. Dust mites and other allergens love to hang out in pillows because they have good conditions, and many people are allergic to these things. People with fibro, CFIDS, etc. especially tend to have problems with their sinuses, and our sinuses often get clogged up overnight. Using these machine-washable covers has helped significantly reduce my nighttime sinus problems.
  • If you have sinus problems, you might also benefit from a non-medicated saline spray. I tend to use it when I get up in the morning to help unclog my sinuses. Some people with sinus problems find them ineffective and use a saltwater concoction though (see Sinus Survival on my fibro bookshelf; that book has all this and tons more).
  • ** Burt's Beeswax Lip Balm is the absolute best lip balm I've ever tried. I love this stuff. The ingredient list is: coconut oil, beeswax, sweet almond oil, lanolin, vitamin E, peppermint oil, and comfrey extract. It relieves my chapped and sore lips where nothing else fully could. It's about twice the price of Chapstick, I think, but in my opinion it's well-worth it, and for me it lasts longer too.
  • ** Get a heating pad or similar device. I am especially fond of my commercially purchased "Spa Wrap-Up," which I heat up in my microwave and which includes rice and fragrances such as lavender. You can also make one yourself using uncooked rice and an old sock.
  • Get an air filter. Some people have found these to not be at all helpful. I have one and have found it to be moderately helpful.
  • Think ahead meal-wise. Try to buy some easy-to-prepare meals every trip to the grocery store for those bad health days. If you like, when you cook on good health days, you can cook extra food and save the leftovers to eat on bad health days. You can also keep a list by the phone of the numbers of restaurants you like that deliver to your area for when you don't want to cook anything at all.
  • Also plan out grocery-shopping. Write a list of stuff you need. Place the stuff in the order that you'll come to it in the store; it helps you walk less and it also helps cut down on impulse buying.
  • ** Get a fan, white noise machine, earplugs, or similar to block out background noise and help you sleep better.
  • Acupuncture has purportedly helped lots of fibro sufferers, although I've not tried it myself. Make sure to go to a licensed practitioner. As with professional massage therapists, most acupuncturists should be willing to meet with you before you try acupuncture, telling you about their practice and showing you around, and answering your questions (often for free).
  • Acupressure has also helped some people. My primary care physician, believe it or not, has an acupressurist and has highly recommended that I try it as well (although I've yet to do so). She especially recommends it for chronic sinus problems, which she had till she started seeing an acupressurist.
  • ** Get a tapwater filter to filter out a large portion of the scary stuff that's in our tapwater. Cheaper and more effective than buying bottled water. You can get a pitcher filter (Brinta is the most famous of those, though only arguably the best) and/or a filter that attaches directly to your tap(s).
  • Join a fibro warm-water fitness class; they are in many areas now, many of them sponsored by the Arthritis Foundation. If there's not one in your area yet--start one! Many of them also include out-of-the-water classes on learning to manage your fibro.
  • ** Keep a journal. Start one if you don't already write one. If you already write one, start keeping track of your meds, exercise, sleep patterns, the weather, and other possible aggravators in it--try to write this stuff down every day, if possible. (For faster recording and look-up, you can keep the aforementioned info in chart format if you want.) In addition to this, use your journal to express yourself. Writing helps relieve stress and sort out your life, your thoughts and feelings, and your illness.
  • Meditate. Meditation has been shown to help a lot of people with fibro/CFIDS/etc. Some books/websites/etc. on fibro have specific suggested meditation ideas for patients (such as Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual, which has a chapter devoted to ideas). Even 10-20 minutes a day can be very beneficial.
  • Start eating more organic foods and less processed foods if you can afford it and if they are available to you. There is a theory that people with fibro, CFIDS, and related illnesses are especially sensitive to the chemicals and other toxins in "modern living," and eating more natural foods and less processed ones has been shown to help a lot of patients. Which also brings me to...
  • ** Cut back on the amount and toxicity of chemicals in your environment(s) if possible. Toxic chemicals of "modern living" are damaging to all of us -- people with fibro/CFIDS/MCS/related diseases are simply more obviously sensitive to them than most people. And many toxins, such as pesticides, stay in the environment for at least 15 years. Examples of changes to make: Use soap insecticide on your houseplants instead of chemical ones, use more natural cleaners, use hypoallergenic laundry detergent, switch from a chemical-laden deodorant to a natural one, and use natural methods of pesticide instead of chemical ones. There are lots of great companies out there selling less or non-toxic alternatives to mainstream stuff, and oftentimes they're even cheaper than the mainstream choices! And as an added bonus, the less toxic stuff people use, the more we are helping the environment in general too. As a sidenote, if you are mildly chemically sensitive e like I am, please be careful; I know other people that started out that way, and only one major exposure to chemicals left them with a bad case of MSC (multiple chemical sensitivity). (My landlord, as of this writing [7/98], is still trying to force me to let them spray pesticides in my apartment. It is utterly ridiculous--not only did I get rid of all the bugs in here by natural means instead of chemical ones [the last time he tried this], but where they sprayed chemicals instead, the bugs are still there! My methods were more effective and efficient in addition to being safer! I think that shows an important lesson. [And yes, I am fighting him on it again; I'm getting the local Tenants Union to back me up. Update: I have been successful in getting them not to spray here! Yay!] If you'd like pesticide alternatives too, go to NCAP, the Northwest Coalition for Alternatives to Pesticide. NCAP is based out of Oregon but they have lots of resources for people all over the world in addition to in their homestate. And they have factsheets, links, and more. The tenants' rights person I talked to suggested I email NCAP, and the person that responded was extremely helpful and sympathetic, and also said my problem was common for renters. If someone tries to make you let them spray, fight them on it!)
  • Some recommendations for non-toxic cleaners/etc.:
  • Citri-Glow, "environmentally safe total home cleaner"
    made by Mia Rose Products, Inc., (800) 292-6339
  • Enviro-Magic Mildew Stain Away (original formula)
    made by Amazon Lumber & Trading Corp., PO Box 530156, Miama Shores, FL 33153; (800) 832-5645
    www.amazonpp.com
  • Ecos (Ultra Concentrated Liquid Laundry Detergent)
    made by Earth Friendly Products, PO Box 607, Wood Dale, IL 60191-2688
    (slight warning: not totally odorless)
    www.ecos.com
  • ChemFree Toilet Bowl Cleaner, "guaranteed for five years/50,000 flushes"
    made by Impex Systems Group, Inc., 2801 NW 3rd Ave., Miami, FL 33127
  • White Wizard Spot Remover and All-Purpose Cleaner
    made by L.B. Roe, PO Box 2666, Anaheim, CA 92814
    odorless, biodegradable, "safe for surfaces and fabrics"; this stuff really is great...it even got black candlewax out of light cream carpet.
  • Janice's organic cotton products & other products
  • Simple's Gentle Shampoo
    made by Smith & Nephew Consumer Products Ltd., Birmingham, England.
    Available from Janice's, amongst other places.
    This shampoo has no perfumes or colors and it is far less abrasive than many commercially-available shampoos. (Many have carcinogenic substances; see The Safe Shopper's Bible [info on my bookshelf].)
  • "Pink Toothpaste with Myrrh"
    made by Weleda, Inc., PO Box 249, Congers, NY 10920; (800) 289-1969
    A sugar-free, detergent-free toothpaste.
  • Safer brand insecticides
    9959 Valley View Rd., Eden Prairie, MN 55344
  • fruit & veggie wash: there are several available; one good one is made by Allens Naturally, PO Box 514, Farmington, MI 48332-0514, (800) 352-8971.
  • homemade soaps; a wide variety are available many places, including at many environmentally-friendly online stores. My personal favorite is Fairy Dust, although they are fragranced if that bothers you.
  • chemical-free deodorant: these are also pretty widely available; there are even a couple for sale at each of my neighborhood drug stores.
  • chemical-free bug repellant: From Steve Twedten, a non-toxic pest controller, as reported in the September 1998 Blazing Tattles: "...spray them with a mixture of 2 oz. of peppermint soap to a quart of water. This spray will kill some species in seconds and the soap will last for weeks, says Twedten, who adds: 'You can also try sprinkling talcum powder, medicated powder, or Comet cleanser wherever you see pests entering.'" There are a significant amount of other non-toxic pest control ideas in The Healthy Household (see my bookshelf).
  • Harmony has an extensive catalog of non-toxic, recycled, organic, etc. products, from cleaners to paper products bedding. Call (800) 869-3446 for a catalog, or write to: 360 Interlocken Boulevard, Suite 300, Broomfield, CO 80021.
  • Aubrey Organics has a nice line of organic toiletries & such. Call 1-800-AUBREY-H for a catalog.

and finally, the all-important basics:

  • ** Again, I stress, find a competent, caring physician who is well-researched in fibro or willing to learn. Don't give your money to doctors who aren't willing to commit to co-managing fibro with you! Doctors that consider fibro a wastebasket diagnosis, make you feel bad about yourself, say your disease(s) is(are) "all in your head," don't take you and/or your pain level severiously, don't listen to you, or imply that you are to blame for your own disease(s) also aren't worth your money or time. [Actually, I've unfortunately found that a lot of doctors have these sorts of attitudes about fibro. Be careful who you go to, and as hard as it can be sometimes, try not to let them get to you. It's not made-up and it's not your fault and believe me, I know how much pain fibro can cause and I totally believe you're in pain.] Interview doctors on the phone or in their office (if they will meet you in their office for a bit for free) before committing t o going to them (i.e., before giving them any of your time and money). Preferably, get recommendations from other people with fibro before going to doctors--they've probably weeded through a lot of the doctors in your area already! Fibro support groups are a goldmine for recommendations, and most of the mailing lists will have someone in your area with recommendations, too.
  • ** Start managing your pain, your life, your stress, everything. Lots of books and websites on fibro have more specific ideas on how to do this. Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual and The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia, for starters (see my fibro bookshelf for details), have lots of specific advice on helping manage, well, about everything.
  • Join a support group, online and/or offline. Many fibro webpages also have fibro email-pen-pal sections if you are shy about joining a support group. The basic point is to meet other people with fibro. You probably won't realize how invaluable this is until you do it. Want to join a local support group but can't find one? Start one! Others in the area will surely thank you for it.
  • ** Get your daily exercise. Two kinds of exercise have been shown to be especially beneficial for people with fibro--stretches and aerobic exercise. Exercise has also been shown to be most beneficial when done in the evening, and when the aerobic exercise is at the point where it leaves you a little bit out of breath, but not too much so. (Exercise that doesn't leave you a little bit out of breath is suspected of actually exacerbating your pain instead of helping to minimize it.) Lots of books, websites, brochures, newsletters, etc. have suggestions for specific exercises that appear to help people with fibro. Stretching is also very beneficial after you have been sitting a long time (including on car/plane/etc. trips). For me, the most beneficial types of exercise have been: the aforementioned qigong; stretching; aerobic exercises; yoga; and water exercises. The Callanetics and Pilate programs have both been highly recommended to me, as has the book A Woman's Book of Power: Using Dance to Cultivate Energy by Karen Andes.
  • ** Read, read, read! There is, luckily, an ever-growing wealth of information on fibro available today -- much more so than there was, say, ten years ago. Check out my fibro & related links and my bibliography of starting points for fibro & related conditions for starters both on and off the web. If you are having a flare-up, it's often best to read in small portions earlier in the day (or whenever you are less fatigued, if it's not earlier in the day). If you are really not digesting what you're reading on a given day, don't feel bad about stopping for the day and coming back to it another day--you'll most likely absorb it better later anyway. Please also know that there is, frankly, a lot of crap out there and that what works for people without these diseases often doesn't work for us. For example, I recently read an article on insomnia by a sleep researcher that contained all these things that I was horrified she was advocating! They included: Don't take a hot bath before bed (hot baths tend to relax our muscles and calm us, greatly increasing our chances for relaxing enough to sleep); keep your bedroom cool at night -- even use a fan or a cold washcloth (many people with these illnesses have found that staying cool greatly decreases their sleep and quality of sleep, and that staying warm again helps immensely); and don't stay in bed for more than ten minutes if you can't sleep (I can't imagine how many days and times I would get up if I followed that! If I can't sleep for a long time, I usually get up, but ten minutes is absolutely nothing to me). Please learn to differentiate the good stuff from the crap, as much as any of us can. Learn to trust your instincts on this stuff.
  • ** Educate others about fibro--in as wide a berth as you feel comfortable with (maybe just close friends and family, maybe coworkers and more distant friends and acquaintances too, maybe even strangers). So many people don't know about this disease, and the more we educate others, the more consciousness-raising we will do and the more sensitive other people will be -- and, also importantly, the more research will hopefully be devoted to trying to find more beneficial things to help put fibro into remission in everyone.

...I am going to keep adding to this section as I find more things that work for me. Please come back sometime. :)

Standard Disclaimer: I am not a medical professional; I am, as noted, a patient with fibro & several related illnesses. Therefore, of course my advice is not to be taken in place of a medical professional's--it is, instead, what has and hasn't worked for me as a patient with fibro. Please seek out a caring, informed physician--it is an important step towards managing this illness for all people with fibro. I take no responsibility for any mishaps that happen as a result of my fibro section--please remember that it is your responsibility to make sure that things are safe and sane for you, since what works for one PWFMS does not necessarily work for another.

If these pages help you in your journey towards better health, please feel free to send me email.

All material (except some graphics) contained herein ©1998-99 by liz. Informational material may be freely reproduced as long as it is not-for-profit, attributed to me, noted as copyrighted, and with the disclaimer. Please do NOT reproduce personal information in any form without my permission. Thank you.

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