I read on the earlier posts some questions regarding Fibromyalgia. I am interested in hearing what others do for Fibro. I have had it for many years now, along with Chronic Fatique. I have been able to continue for the most part up until the first of this year when I had a flare up and was fired from my job due to the poor health condition that I was experiencing. Ever since then, I have not been able to come out of this flare up. I have been using a natural doctor, and am on the veg diet (always have been), don't use any "drugs". Any other suggestions would be great!! Blessings! Sissy

-- sissy sylvester-barth (jerreleene@hotmail.com), November 13, 2000

Answers

Sissy, unless you are on the vegetarian diet for ideological reasons (I may not agree with them but everybody is entitled to their own beliefs), try going the opposite direction to a paleolithic diet. There is a web site with a lot of helpful information, easy to find with a search. A lot of research is showing that 1. people are not getting enough of the right kinds of proteins and fats, and 2. grains and dairy products in excess (which is how most people eat them) can cause a lot of serious health problems. Also, 3. most people are eating way too many carbohydrates for good health -- all carbohydrates, regardless of their source in your diet, are turned into simple sugars by your body. Sugar boosts insulin, and it is being discovered that insulin controls or affects a lot more in your body than was first realized. Regarding number 2., as many as one in a hundred people in this country may have celiac disease or leaky gut syndrome, in which case they shouldn't be eating any grains at all. After grains have been cut out for a few weeks it is often possible to add dairy products, especially yogurt and hard cheeses, back in safely. There is way too much information on all this for me to post here, so do a web search and see what you come up with.

-- Kathleen Sanderson (stonycft@worldpath.net), November 13, 2000.

I've been talking to another person on a diff. forum that has Fibro & chronic fatigue.After comparing notes with her, we discovered we had very similar symptons.Took me close to 20 years to find out the underlying factor for me is allergies. Severe allergies. Thought I was going to stop breathing and die at times allergies.Both foods and inhallants.So,once I found out this,and was able to start practicing avoidance,I got better-not cured-but better.Took time but it's the only thing that helped me in the long haul.

One thing I happen to be allergic to is molds,in the air or eatened- and anything fermented,fungal,cured,yeasty,day old,mushroomy,well you get the idea, is moldy.it was a very long avoidance list

If you want to talk about this,just email me and I'll fill you in on what I know

If anyone has info,no matter how seemingly farfetched on what can cause people to develope severe allergies,you can let me know as well.I CURRENTLY HAVE HEARD SEVERAL THEORIES AND AM INTERESTED IN WHAT YOU ALL KNOW AbT. IT....Oh sorry..nontypist accidently hit capslock.Not yelling-honest!

-- sharon wt (wildflower@ekyol.com), November 13, 2000.

Kathleen, when I stopped eating red meat I started feeling better. I'm not a vegetarian but I don't eat pork and very very seldom eat beef. The more whole grains, fruit and veggies I eat the better I feel. However food allergies can make you feel terrible.

Sissy, you might check out the Mediterranean diet. It's supposed to be one the very best. It's not vegetarian. Also the Fit for Life diet by Harvey and Marilyn Diamond. I know somebody having good results with that.

-- Cindy (atilrthehony_1@yahoo.com), November 13, 2000.

My twin sister and I (age 42) have been in limbo for 27 yrs as to wether we have fibro/arthritis/ or early (infected early in life) lymes. We participated (with my parents permission, thanks Mom) in the test studies for tylenol, advil, aleve and bufferin. Sis has had numerous surgerys to repair her joints, I have kidney damage due to meds. Now? We suffer thru it, but most importantly: keep our weight down, eat 'right', exercise..exercise...exercise; Most days it's a chore just to get out of bed, but you MUST! I stretch for at least 5 min. (that's just to hit the loo) another 5min before showering. Move, Move, Move. It hurts to sit here and type this post, get past it. Maybe I'm numb to the pain. Maybe.

-- Kathy (catfish@bestweb.net), November 13, 2000.

HI, I was diagnosed with Fribromyalgia 6 years ago, then lupus, rhuematoid arthritis etc.. What I do for my fibromyalgia is eat more poultry then beef, and take a muscle relaxer at night. I know you don't use drugs, but I tried the vege way, got sicker, so very much sicker, then I tried another diet..almost had a heart attack. I have so very many allergies I can't eat alot of grains and fruit. I went to a rhueamatologist and he got me started on Flexeril, the muscle relaxer, real mild. It has been the best thing for my fibromyalgia!!!! I rest alot better at night and feel like a new person!! I try once in awhile to not take it, drink warm milk and all, but I still have the knots in my muscles that like to show themselves when I sleep, so I take my meds. Rest rest and more rest is the best thing, BUT don't lay around too much. I know that sounds weird, but you need to move, so you don't get stiff. Move, rest , move, rest you get the idea. I have so very many allergies, that it is hard for me to find medications or food. I am always nervous to eat new things when once I could eat anything, but fruit, always had that allergy. I feel for you !! Hang in there!!

-- Cindy in OK (cynthiacluck@yahoo.com), November 13, 2000.

My wife has fibro, and she just started taking herbalife after talking to several other people who claimed it helped them. It's been a week now, and I have seen a great improvement already, but am not sure if it's physical or psychological @ this point.

-- Eric in TN (eric_m_stone@yahoo.com), November 13, 2000.

I found that I got better after I started detoxing. Women hold alot of chemicals in their body fat, not that we are fat just have more then men. I still have problems but I can usually find the source of the problem. Tile glue in a store, perfume on a person, allergic food I had eaten.

I detoxed by taking suppliments. My sister did the detox clinic but still had problems (it cost alot) I am now going to a homeopathic. I know I should excercise more, though.

-- Dee (gdgtur@goes.com), November 13, 2000.

Sissy and Sharon wt, I have mild CFS, and have found that my symptoms are greatly relieved by taking Coenzyme Q-10 100mg. once a day, astragalus root ( potent immune system regulator) 3 capsules, 3 times a day, and licorice root, 3 capsules, 3 times a day (also strong immune system regulator, but do not use longer than a month at a time without a month break inbetween).

Allergies are sometimes brought on by constant exposure to a substance your body finds irritating, even though you might not notice any obvious symptoms for years. I ruined my immune system, in part anyway, by 20 years exposure to the pesticides that I used on my horses, the fly spray that most horsemen go through by the gallons every spring, summer, and fall. I never gave a thought to it until it was too late, I was sick, and wondering why. Petrochemical based pesticides, herbicides ( the stuff city folk pay landscapers to spray on their lawns to kill the "weeds"), and fungicides are slowly building up to sometimes toxic levels in all our bodies, some of us show signs sooner than others, but these substances are highly toxic to all living things, not just humans. Needless to say, I use garlic to repel the flys on the horses and dogs, use no petrochemical fertilizers anywhere on the farm, and will not ever purchase a fungicide for any purpose.

Buy organic whenever you can, it is cheap insurance against worsening your condition and allergies. Diet should be common sense based, most importantly, what works best for maintaining YOUR health! What works great for one person, might make another terribly sick due to personal sensitivities and allergies.

There are several new drugs for fibromylagia on the market, I would not hesitate to find a good internist and at least try some, at least have something on hand for the "flare ups", as I believe they are self perpetuating once started, you need to break the cycle so your body can heal, with the help of the above mentioned herbal products. There are good internist's out there , they are just very hard to find, the younger ones not long out of medical school have the most receptive minds, especially concerning herbs, and alternative healing, and about using the newest drugs on the market.

Good luck, with persistence and continuing self education, you will improve your comfort level and quality of life. Annie in SE OH.

-- Annie Miller (annie@1st.net), November 13, 2000.

Something to remember: When you heal naturally you get worse before you get better. The best way to eat is given in the book of Leviticus. It's not mandatory any more but it's still the best way. Drinking lots of pure water is important, something I have a big problem with :~( We were not intended to eat meat. We've been given permission, so it's o.k. but it's not the best thing to do. Our intestines were not made for easy digestion of meat. So you need lots of fiber to help push it through. It wasn't til after the flood that it was o.k. Even domesticated dogs have problem with too much protein.

The hormones and antibiotics in beef were making me hurt worse and feel sick all over.

We need to treat our natural bodies natrually. do I practice what I preach? I'm learning the hard way.

-- Cindy (atilrthehony_1@yahoo.com), November 14, 2000.

Cindy, with all due respect to your experience and religious convictions, I feel the need to express a different opinion on diet. I think our digestive systems are perfectly designed for an omnivorous diet. We have neither the complex system of the cud- chewing vegetable eaters, nor the simple system of the carnivore. I believe we need animal products in our diet to be truly healthy, in vaying degrees according to things like genetic heritage. As far as dogs go, although there are surely cases of "too much protein" causing problems,they are generally linked to an abnormality in the animal which interferes with assimilation. Although dogs need much less vegetable matter than we do (as you mention, we need lots of fibrous whole foods), I agree they do need some. Since I have been feeding my dogs (several different breeds) primarily a raw meat/bone diet, I have had no problems. As for fibromyalgia, detoxing is critical; and many people have found malic acid very helpful. Blessings....

-- Earthmama (earthmama48@yahoo.com), November 14, 2000.

Gosh, thankyou everyone for your comments and suggestions!! I need to clarify that I am not on a total veg diet. I do eat some meat, but it has to be organic, homegrown stuff. And I don't eat very much, only because I know what it does to ME. I am also very careful with using too much grains, due to allergies. I use to be a sugar junkie, and have learned to cut that out, along with carbohydrates. Love my rice!! Everyone of our bodies is different. I have allergies also, although I haven't had the workup for them due to finances, I pretty much know what they are just by elimation of certain things from my life, and then re-adding them.

I have been through de-tox, mainly due to me having a cleaning business for the last 10 years and using caustic chemicals. Also, from using hair dyes, premarin and other junk. I used malic acid, and herbs for liver cleansing (can't pull their names out of my head right now). I drink lots and lots of distilled water, and use colloidal silver.

Which brings me to another question; who uses colloidal silver and what have been your results?

Another question for you fibro people: what have you found that works best for "brain fog"? This is probably my most aggravating symptom!! Before Fibro, I was type A, go, go, go!!! Now, I am way below that!! But the most disconcerting to my whole family is my foggy-headedness! My 16 year old has a wonderful time (not!) answering the same question over, and over again, because I forgot that I asked it already, and already!! Makes him goofy.....

Blessings, Sissy

-- sissy sylvester-barth (jerreleene@hotmail.com), November 14, 2000.

Earthmama, You are certainly welcomed to express you differing opinion with no problem. Wish I could remember all the sources where I read about the digestion thing. I've been studying this stuff off and on for a long time. I'm not a vegetarian, although I was for a year and I did feel much better. But my problem isn't fibromyalgia it's chemical poisoning, and many of the symptoms are the same. The point that at least most of these books/articles make is that the human intestine is very long while animal intestines are very short in comparison. The longer something is in there the more rancid it becomes the more likely a person is to get sick. At some of the health food stores I've visited, they liken it to drain pipes and how stuff get stuck for years. Anyway I don't mean to sound gross or argumentative just stating what I've learned.

And about the high protein low carbohydrate diet; I watched the experts/authors on the Oprah show, she was really excited about this type of eating and so was many in her audience. I don't watch the show all the time, but I just happened to be flipping thru and came across another one of hers. This time it was on how she was glad she quit eating that way. She and the expert and audience on that day said the low carb diet was not good for them. So. Find what's best for you. I have been trying to increase my protein intake without decreasing the fiber, If I didn't have the fiber, well, you know middle age and all that.

FYI: Some of the very best things you can eat(barring allergies) are Salmon, blueberries, mushrooms, tomatoes,broccoli(esp. women) cabbage, garlic, lemons, eggs and real green tea. Also they have recently discovered that dark chocolate is a cancer preventative.

Other cancer preventatives: tomato sauce/ketchup, tea, oranges, broccoli. Red wine or non alcoholic red grape juice-not welch's is good for your heart, too.

-- Cindy (atilrthehony_1@yahoo.com), November 14, 2000.

I love green tea but the caffine bothers my cystis. I usually want until they really bother me then stop the tea for a while then start again.

Sissy, I had both the blood RAST test and scratch test for allergies. One showed I wasn't allergic to something but the other test showed I was highly allergic to it. How could that be? My sister has a theory that the blood test shows a delayed reaction and scratch test an immediate reaction. The brain fog could have been from something you ate or smelled yesterday and it took that long to work out of your system. My son has delayed personality changes after eating dairy.

-- Dee (gdgtur@goes.com), November 14, 2000.

Sissy, try taking Co-enzyme Q 10 100mg. once a day, and Gingko, 3 capsules 3 times a day for the "brain fog", was my biggest complaint also with CFS. I started noticing an improvement in the "brain fog" after 2 weeks, my energy level went up in 24 hours, was very impressed with the results! Annie in SE OH.

-- Annie Miller (annie@1st.net), November 14, 2000.

And now for something a bit different . . .

I don't have any personal experience with fibromyalgia. But I know that Dr. John Sarno believes that two of the factors "creating" (or contributing to) it are stress and anger. Apparently he discusses this in his book: The Mindbody Prescription : Healing the Body, Healing the Pain

. Here is a quote from an Amazon review: "he explains how emotions including guilt, anxiety, depression, and low self-esteem can stimulate the brain to manufacture physical symptoms including fibromyalgia, repetitive strain injuries, migraine headaches, hay fever, colitis, ulcers, and even acne. If these psychosomatic problems all sound a little Freudian, what with the repression of emotions in the unconscious, it's because Sarno unapologetically borrows from Freud for the basis of his theory and cites childhood trauma as a major source of emotional problems. He also says that his program is a "talking cure" of sorts, since patients must be convinced their pain is rooted in their emotions before healing can begin.

I have had success in ridding myself of foot pain by reading one of his books on back pain, and following his suggestions.

BTW, I know there are people who object to supporting Amazon.com. Just a suggestion -- just use the site as a place to look up books that you might be interested in. You don't have to buy them from there! I look them up, then try to find them somewhere for less money.

-- Joy Froelich (dragnfly@chorus.net), November 14, 2000.

There is alot of confusing information about fibromyalgia. A lot of people, including doctors, do not believe it is a real condition and attibute it to stress etc. The CDC, however, does recognize it as a medical condition. Because of this, there are numerous people who try to make money from promoting 'cures'. Be careful.

Sixteen years ago, this week, I came down with a viral flu that never went away. I ended up with fibromyalia. Not many patients can actually pinpoint when they contracted it. I am one the few that can. I was diagnosed with MS, stress, hypocondria etc. What I have is a very real condition.

Each person, must learn how to manage their condition on their own. Here is some hard learned advice though.

#1 Learn what triggers it in you. For me it is; refrigerated air conditioning, illness, stress, and violent season changes. I have adjusted my life accordingly. I moved to the mountains where I do not need air conditioning. When I attend an event, such as church or the movies, where I know I might encounter air conditioning, I take a shawl not matter how hot the weather. I always get a flu shot because having the flu on top of a condition that mimics the flu, is not good. I try to eat well, exercise and build my immune system so that I am seldom ill. I now lead a less stressfull life and do all that I can to keep it that way.

#2 I finally left conventional medicine. All the doctors could do for me was to hand me prescriptions for medications that sort of helped and that I would eventually become sensitive to. It took me a full year to wean myself off the last med. Sleep is the most important area that I can help myself. I was always an isomniac and of course, fibromyalgia exacerbated that. I have a careful night time routine and when neccessary, I use a tincture of skullcap or valerian root, that I make myself. You must find what works for you. I know alot of fibromyalgia patients and I have it much worse than they and I get along with less medication because I was willing to change my lifestyle. A musician leads a stressful life. Remember though, diet and exercise are very important or you will freeze right up.

#3 When you do have a relapse, remember, it will end. Arthritis patients have relapses and so will you. The spring and fall season changes this year were especially bad and I had to give in. I have become a regular weather barometer. I usually know when a weather change is coming. The first thing I do is take some Motrin and then have a long hot bath. This takes care of the first bad muscle aches. Then I wrap up in warm clothes and go to bed and try to sleep the worst of it off. Sometimes I have to take it easy for a day or so. I give myself permission to have a dirtier house etc. I know that the exhaustion I feel will eventually go away. It is now not as bad as it was in the begining when I would lose the feeling in my arms and legs, fall down, drop things, be unable to concentrate etc. This lasted for over two years until I began to show some improvment. A very hard two years of thinking I would never again be able to care for my family that way I wanted to. Because I now take care of myself, I feel that I handle it better.

#4 Remember, you have a real medical condition. It is not allergies, bad diet, hysteria, stress or overwork. I have been accused of them all. Until someone has experienced the sever pain that accompanies this problem they cannot understand what we are talking about. I know mine is the result of a viral flu and I know it is not 'all in my head'. Hang in there.

-- Cheryl (bramblecottage@hotmail.com), November 14, 2000.

Cheryl,

Thankyou, thankyou, thankyou for your testimony!!!

I had mononucleosis when I was 14 years old. Bad enough to wind up in the hospital for a week with it! After my 3rd child, and during the diagnosis of my 2nd child having terminal cancer, and my husband walking out on us, I got a "viral flu", only it never went away.'

I have since, like yourself, learned to take life by a different route. I do, and agree with, all the things you wrote! I too, went through the doctors, and drugs and the it's "all in your head" stuff.

Like yourself, sleep is very important to my body. Also exercise, only this takes a strong will on my part, and some days, I just don't have it. I have a wonderful man and children who understand. For this I am very, very grateful.

Blessings, Sissy

-- sissy sylvester-barth (jerreleene@hotmail.com), November 14, 2000.

Cheryl-another person I talk to had herfibro problems start with a really bad flu and that is one of the things that I also had when this all started. But I cannot pinpoint it specifically bc I also was pregnant,had a ruptured disc,from same flu bout believe it or not,and the most stress I'd ever been under.But I think it's a good avenue of exploration and is also one of the suspected"triggers" of bad allergy episodes that I've read about.One of quite a number I've read about recently.Who knows?

I also was told I just had stress and sent home with a prescription for "nerve" pills which I did not fill.but it was not that simple at all.Yes it's all too real.

ButI hope you don't minimize allergies as a possible underlying problem for some people.Allergies can make you literally deathly ill.I don't just get the sniffles.I get sick as could be.All over.Systemic reaction.If I had not finally found out my triggers,I don't think I'd be here.That's how sick you can get.

Treating my allergies is the only long term relief that I have gotten.Other things helped only for the short them.Herbs are a good suggestion,but you can get allergic to them as well if taken over a period of time,which you end up needing to do.I have.

On the posting abt two allergy tests-The two allergy tests can give different results.Some things may be inhalent triggers, some may be food, and some may be both.You can go to the FAST website for info on more of this and specifically food allergies, if you think this is a possibility for you.

No matter what the original trigger,if you are also reacting to allergies in addition to your other problems,you will be helped by getting a grip on them.I did not know how sick allergies can make some of us til it happened to me.My concept was also one of a stuffy nose and sinus headache.I wish!Instead,Allergies are a whole body response,sometimes with fatal results.My niece thru marriage "died" in the E.R.and had to be revived.It was from a severe allergic reaction to certain food and things in the air ,and she was only in her twenties.

-- sharon wt (wildflower@ekyol.com), November 14, 2000.

I know very little about Fibro, but the one thing I have heard is that lots of salmon oil can be very effective. Balancing out the omega 3 and 6 essential fatty acids are very important for all of us. But I have heard that if your intake of fat is a 1:1 ratio for omega 3 & 6, there is great relief after a couple months. The best source of omega 3 is fish oils.

Take care, Andrea

-- andrea smith (a-smith@mindspring.com), November 15, 2000.

Organic flaxseed oil capsules are an excellent source of omega 3's also, without having to expose yourself to the possible toxins in a fish oil capsule, or from eating the fish itself. Fish carry a very high toxin contamination ratio, due to water pollution. and lingering DDT. Yes, DDT is still in the environment, sad, but true. Annie in SE OH.

-- Annie Miller (annie@1st.net), November 15, 2000.

Queen Buffness developed fibro soon after she had a heart attack in 1995. I wonder which came first tho. The docs think her MI was caused by a vasospastic event. Similar to migranes. Spasm in the arteries in the head or neck causes headache. Her cardiac arteries spasm- bad enough to cause damage, the first time.

The fibro that followed has been much worse than the cardiac event. Her lifestyle has been completly altered. Just some days where she can't do diddly. I am going to get her to read this thread. John

-- John in S IN (jsmengel@hotmail.com), November 15, 2000.

shocking bad words -- they were just discussing this on public talk radio tonite and I didn't pay enough attention. Two things that the speaker said definitely to deep six are anything with refined white sugar and anything with wheat. She was speaking about a 15 month healing program for fibro, but I only caught a bit of it. You can call or email WPR for information on their programming.

-- Julie Froelich (firefly1@nnex.net), November 16, 2000.

try www.hacres for some fantastic answers to your health problems: I have tried the diet and it works! Lots of energy, pain relief, and healing

-- Nelda Church (Carlnelda@aol.com), November 18, 2000.

I think it is interesting to see the long list of possible causes of this health problem. On another thread we were talking about allergies (and I got off onto ADHD also), and again, a long list of possible causes, all ending up with similar symptoms -- and the list of causes looks pretty similar to the ones on this thread. I think it needs to be a wake-up call to people to dump the chemicals, eat right (if we can ever agree on what *right* is!! LOL!!), eat naturally produced foods -- notice a couple of people mentioned that they could eat home-grown meats but not store bought? (I was going to bring that up -- it is partly because of chemicals and hormones in the feed, of course, but also because most meat that ends up at the store comes from animals who have eaten way more grain than would be part of a natural diet. In the wild, animals only get grains in late summer and fall when they are ripe and available, and even then it isn't the bulk of their diet.) Also exercise was mentioned -- we tend to have sedentary jobs and try to make up for it with a strenuous bout of exercise at some point during the day -- or the week! People end up with injuries as a result. Much healthier to have the natural round of daily chores interspersed most days with periods of quiet (I know some days don't go like that!).

And stress does have a lot to do with all of this, I think -- I don't believe in psychology at all, but we are most of us still living an unnatural lifestyle with unnatural hours away from home and family. Many have had broken marriages which is very stressful, or other major events in their lives. I've found that even if I don't *feel* stressed by something (I'm staying calm, feel peaceful inside), a major event or change *always*, ALWAYS produces some adverse physical reaction. There may be other factors in causing illness; viruses, vaccines have been mentioned, diet, chemicals, etc., but I think that our bodies are less able to handle these things because we are under stress just by our life-style, and by the way civilization(?!?) is today. And there is another factor -- at the time of Creation, everything was perfect. Since Adam and Eve sinned, bringing death and decay into the world, everything has been slowly deteriorating, and that includes the human body. There are a lot of things we can and should do to improve our mental and physical health, but we are not going to be able to stop the downward spiral. If God did not eventually stop everything and start new (as He will after the Tribulation and Armageddon) I suppose in time the human race, and probably all life, would simply stop being viable and we would all die off from the accumulated weight of physical malfunctions.

-- Kathleen Sanderson (stonycft@worldpath.net), November 18, 2000.

Kathleen, how does this fit in with the basic Bhuddist belief that harmony (mind, body, and soul)is achieved by becoming harmonious with all of Earth's creatures and Nature? Please do not take this personally, freedom of religion and all, but I find such Christian dogma offensive, and illogical. Annie in SE OH.

-- Annie Miller (annie@1st.net), November 18, 2000.

"one man's theology is another man's belly laugh" Robert Heinlein

-- sharon wt (wildflower@ekyol.com), November 18, 2000.

There is a product called NONI Juice... Here is the web site to it http://www.tahitiannoni.com A friend of mine used it and swore by it.. I am on a BARF list, and they swear by it... It says it helps Fibro, Lupas, CFS, arthi, and more..

-- Ginny Davis (yehagirl@goin.missouri.org), November 19, 2000.

I'm not offended by Annie's response, just want to note that the falling away from the knowledge of God was predicted a long time ago, and is a verification in itself that the Bible is true!!

-- Kathleen Sanderson (stonycft@worldpath.net), November 19, 2000.

Am re-reading these posts, and felt I needed to add to my previous answer to Annie.

Annie, why should Christian beliefs "fit in" with Buddhism? Buddhism was started by a man who is long since dead. Jesus Christ is the Creator of heaven and earth, and everything that is in them, and He is ALIVE!! Why should He have to "fit in" with something man-made?!?

-- Kathleen Sanderson (stonycft@worldpath.net), November 20, 2000.