Anyone else with fibromyalgia?

[Country4ever]

LOL Jen! Not to worry. You definitely don't come across as Cliff Claven!
I love hearing peoples' theories! So don't stop.

[DreamStalker]

Thought the followers of this thread might find this article interesting -
http://www.nytimes.com/2008/01/14/healt ... 1200459600

Before finally being diagnosed with OSA, my doc ran a battery of blood tests too including for Lyme disease with no conclusive diagnosis of my chronic fatigue and pains. After starting the treatment of my OSA, I then realized I was suffering from severe hypoxia. All of my fatigue symptoms went away and most of my chronic pain also went away; although I still endure some mild chronic pain. As Jen pointed out, I think most of my residual pains are likely related to general inflammation and an out-of-wack skeletal structure (I'm flat footed and still overweight … which makes it more difficult to maintain correct posture).

I see a chiropractor on a regular basis which includes massage therapy and acupuncture/EMS therapy in addition to the spinal adjustments. I have cleaned up my diet and have gone to only whole natural foods in hopes of reducing my inflammation. I’m also taking fish oil, zyflamend, and glucosamine-chondroitin supplements (and they seem to be helping because when I run out, I notice the pains come back).

Regarding the article, I think the western medical paradigm of treating symptoms rather than causes results in a health-"profit" system instead of a health-"care" system. I also have begun to think that the food (or as M. Pollan would say, “food-like substances”) that we eat are bad for our health.

[Lee Lee]

Well, I got my blood test results on Thursday and was told that even with the 50,000 units, my Vit D was still almost non existant .
Now I have to take 50,000 3 times a week for a month and then twice a month after that.
I guess I should be afraid of toxicity, but I'm not, after doing some internet research.
Apparently, in order to elevate the levels properly , you have to take "pulse" doses.
Now, the big thing is, I feel great, after taking my doses. The pain goes away, the fatique goes away.

[sharon1965]

I also have begun to think that the food (or as M. Pollan would say, “food-like substances”) that we eat are bad for our health.

hey dreamstalker
i agree with you on the food thing...even if we try to eat a healthy diet, ie. shopping the periphery of the grocery store, eating only fruit, veggies and lean meats, avoiding processed foods, it's hard to know what we're really getting: our foods are so tainted, the soil is depeleted, everything is full of hormones etc....
i obtained a copy of an anti-inflammatory diet from a friend who sees a naturopath, and i can see it's really helping her, but MAN is it restrictive! i'd like to try some of the things on there, though, like giving up wheat and red meat, but i just don't think i can imagine a life without CHEESE!!!
plus i'm irish and married to an italian...no POTATOES!!? NO PASTA!!!?

but something has to be done...i eat what my husband prepares and he's downright skinny and has more than his fair share of energy...it looks like i need to re-think what a healthy diet looks like, at least where it pertains to me, as the fatigue and chronic pain just aren't diminishing

i'm also going to have to look into that vitamin d stuff...thanks for posting all that info, leelee

[Country4ever]

LOL "food-like substances".........how true!

Lee Lee, I'm a bit concerned about all that Vitamin D. I'm thinking that it might be good for someone to figure out why you can't seem to hold onto your D, instead of overloading you with it. Does that make sense? I'm thinking there might be something else going on, that once that is corrected, you won't have to chase your D. Doesn't D have something to do with the parathyroid?

I think alot of us have similar pains/fatigue, but we've probably gotten there from different directions. I seemed to develop alot of my problems after I had a horrible influenza and pneumonia in l995. Then I was on antibiotics for 2 months......which does make me wonder about leaky gut syndrome.....although no conventional docs would ever give credence to that possibility.
I definitely respond poorly to some foods. Unfortunately, they're usually the foods that I crave the most!
I feel like I spend alot of my time just putting out fires, as far as my health goes. I think I eat fairly nutritiously......but too much and too often. I probably overwork my gut.
I have so many interesting books on various health issues, but I can't read. Its just very difficult for me. And I've discovered that if you have a learning disability, you might get attention when you're young, but nobody seems to care about a 50+ year old woman having it, or diagnosing it, or doing anything about it. Sometimes I'm tempted to learn Braille! Maybe I could bypass the reading problem I have now??
Its nice talking to you folks about these things!
I guess I should incorporate some CPAP talk here too. I'm finally going through a good sleep spell. Does that happen to any of you? I have about a month of bad sleep, then it gets good for awhile, then bad, then good. Its just so inconsistent. I wonder if it has something to do with those darned female hormones!

[socknitster]

Thought the followers of this thread might find this article interesting -
http://www.nytimes.com/2008/01/14/healt ... 1200459600

Before finally being diagnosed with OSA, my doc ran a battery of blood tests too including for Lyme disease with no conclusive diagnosis of my chronic fatigue and pains. After starting the treatment of my OSA, I then realized I was suffering from severe hypoxia. All of my fatigue symptoms went away and most of my chronic pain also went away; although I still endure some mild chronic pain. As Jen pointed out, I think most of my residual pains are likely related to general inflammation and an out-of-wack skeletal structure (I'm flat footed and still overweight … which makes it more difficult to maintain correct posture).

I see a chiropractor on a regular basis which includes massage therapy and acupuncture/EMS therapy in addition to the spinal adjustments. I have cleaned up my diet and have gone to only whole natural foods in hopes of reducing my inflammation. I’m also taking fish oil, zyflamend, and glucosamine-chondroitin supplements (and they seem to be helping because when I run out, I notice the pains come back).

Regarding the article, I think the western medical paradigm of treating symptoms rather than causes results in a health-"profit" system instead of a health-"care" system. I also have begun to think that the food (or as M. Pollan would say, “food-like substances”) that we eat are bad for our health.

Stalker,

Haven't read the article yet, but wanted to note this important thing that you brought up. The food we eat can be regarded as medicine, because it is made up of complex chemicals. It isn't just some benign thing we use to stop hunger pains. It can help us and hurt us depending on what we choose.

I once had a friend remark that the cholesterol medication she was taking was ridiculous because there weren't food components floating around in her blood--she said--if I eat an onion, there aren't tiny pieces of onion floating around in my blood. But she was dead wrong. There certainly ARE fragments of food in the form of molecules and chemicals that are in our blood from food. I think we would be absolutely flabbergasted if we could actually truly comprehend it. I know for a fact that if I eat something I'm allergic to in large amounts it can stay in my body and contribute to ill feelings for up a month--that means the offending protein is sticking around that long!

Jen

[socknitster]

Well, I got my blood test results on Thursday and was told that even with the 50,000 units, my Vit D was still almost non existant .
Now I have to take 50,000 3 times a week for a month and then twice a month after that.
I guess I should be afraid of toxicity, but I'm not, after doing some internet research.
Apparently, in order to elevate the levels properly , you have to take "pulse" doses.
Now, the big thing is, I feel great, after taking my doses. The pain goes away, the fatique goes away.

Just a thought,

I wonder if you took the pills with fatty foods, if it would absorb better since it is a fat soluble vitamin? You might look into that.

I once took a medication that worked better if you took it with fatty food. It was a parasitic. I had come back from Costa Rica, after an extended stay living with a host family in the wilderness and had some bowel problems. It was ultimately related to my milk allergy but taking the parasitic was meant to eliminate that as a possibilty, especially since my problems seemed to start there (I had been consuming raw milk, warm from the cow, while there, go figure!).

Anyway, it just occurred to me that it might help. I talked to my ob today about calcium, vitamin D etc etc and he agreed with my conclusions. I asked him to kind of check up on him, since he is a new doctor. And it was very reassuring!

Guess what--in three weeks I get my 20 week ultrasound and will hopefully discover the gender! I'm so excited I can hardly stand it!

Jen

[socknitster]

Sharon,

Start small and work at it bit by bit. That is what I have been doing for the last 10 years and it is working. I used to eat a terribly high glycemic load. Now I don't consume cheese or too much refined anything. Sugar in my green tea and a tiny portion of dark chocolate. Quite different from my all white bread and potatoes with some meat thrown in for good measure diet I learned from my family as a child.

Country,

It is interesting that you say the foods that don't agree with you, you crave the most--that is the very same feeling I had of milk when I discovered my food allergy to it. And the doctor I spoke to about it confirmed that to be true--that many, many sufferers of food allergies report this feeling. I probably consumed milk 5 times a day--yogurt, cottage cheese, chocolate milk, cheese, butter. I have never felt this way about anything else in my life except milk. It was hard to give it up, but I saw the rewards right away, and now 6-7 years later, I don't even miss it really. Just occasionally get a yen for cheese pizza. BUt you would be surprised how good a homemade pizza with tons of veg and some cured meats can be!

Jen

[DreamStalker]

Thought the followers of this thread might find this article interesting -
http://www.nytimes.com/2008/01/14/healt ... 1200459600

Before finally being diagnosed with OSA, my doc ran a battery of blood tests too including for Lyme disease with no conclusive diagnosis of my chronic fatigue and pains. After starting the treatment of my OSA, I then realized I was suffering from severe hypoxia. All of my fatigue symptoms went away and most of my chronic pain also went away; although I still endure some mild chronic pain. As Jen pointed out, I think most of my residual pains are likely related to general inflammation and an out-of-wack skeletal structure (I'm flat footed and still overweight … which makes it more difficult to maintain correct posture).

I see a chiropractor on a regular basis which includes massage therapy and acupuncture/EMS therapy in addition to the spinal adjustments. I have cleaned up my diet and have gone to only whole natural foods in hopes of reducing my inflammation. I’m also taking fish oil, zyflamend, and glucosamine-chondroitin supplements (and they seem to be helping because when I run out, I notice the pains come back).

Regarding the article, I think the western medical paradigm of treating symptoms rather than causes results in a health-"profit" system instead of a health-"care" system. I also have begun to think that the food (or as M. Pollan would say, “food-like substances”) that we eat are bad for our health.

Stalker,

Haven't read the article yet, but wanted to note this important thing that you brought up. The food we eat can be regarded as medicine, because it is made up of complex chemicals. It isn't just some benign thing we use to stop hunger pains. It can help us and hurt us depending on what we choose.

I once had a friend remark that the cholesterol medication she was taking was ridiculous because there weren't food components floating around in her blood--she said--if I eat an onion, there aren't tiny pieces of onion floating around in my blood. But she was dead wrong. There certainly ARE fragments of food in the form of molecules and chemicals that are in our blood from food. I think we would be absolutely flabbergasted if we could actually truly comprehend it. I know for a fact that if I eat something I'm allergic to in large amounts it can stay in my body and contribute to ill feelings for up a month--that means the offending protein is sticking around that long!

Jen

Yes. I am very much in agreement. Food is not only a nutritional sustenance of life, but it can also be a healing medicine and a poisonous sickness and death. Our modern culture has tipped the scales more and more towards poison in order to maximize corporate profits. Marketers label the crap in the grocers as “heart healthy”, “low fat”, “low carb”, “fortified with” blaa blaa blaa while the supposedly healthy food in the produce section reeks of pesticides-herbicides and genetically modified genes (subsidized by our tax dollars and the future environment of our offspring of course). The more I research human nutrition and its history, the more I understand its link to human health and the lack thereof.

[DreamStalker]

More on food and health -

One Meal to Good (or Bad) Health
Tuesday, Jan. 15, 2008 By LAURA BLUE

Want to know how many cheeseburgers you'd have to eat before they start doing damage to your body? The answer, according to a review of new dietary research, is just one. Just one high-fat, high-sugar meal can trigger a biochemical cascade, causing inflammation of blood vessels and immediate, detrimental changes to the nervous system, according to the paper, published this week in the Journal of the American College of Cardiology. And just one healthy meal helps return your body to its optimal state. "Your health and vigor, at a very basic level, are as good as your last meal," says lead author James O'Keefe, head of preventive cardiology at the Mid America Heart Institute in Kansas City, Mo.

Here's how it works. When you eat, your body breaks down the food into a stream of nutrients, including glucose (sugar), lipids (fats), and amino acids (the building blocks of protein). If your meal happens to be junk food — say, a processed bun with a cheap beef patty, French fries and a Coke — the rush of sugar causes something called "post-prandial hyperglycemia": a big spike in blood-sugar levels. Poor diet in the long-term leads to hypertension and buildup of gunk in blood vessels that increases heart-attack risk. But there are short-term effects too. "People don't understand this, even most physicians," says O'Keefe. Tissue becomes inflamed, just as it does when infected. Blood vessels constrict. Free radicals, unstable molecules that cause cell damage and are thought to contribute to chronic disease and aging, are generated. The body's stress response has a bigger effect on blood pressure, raising it higher than normal. People may notice they feel crummy a few hours after eating junk food. And the sudden surge and drop in insulin — the hormone that spurs your body to store energy — also leaves them feeling hungry again soon after eating, despite having had plenty of calories.

The good news is that these blood-sugar spikes and crashes are easy to regulate. Blood sugar will rise and fall quickly if, for example, a person eats an easily digested meal of only white bread. Eat some vinegar with the bread, however, and the impact is dampened: The vinegar slows digestion, helping to keep blood-sugar levels more even. The same thing happens if a person takes his bread with nuts or with a glass of wine. (The dampening effect of alcohol reverses after more than a couple units, which may help to explain why moderate drinking, but not heavy drinking, is associated with long life.) The common denominator of all these slow-release foods, says O'Keefe, is a generally high nutritive value with low calories. The healthy foods are exactly the ones you would expect, all that stuff your mom (and your doctor) told you to eat: lots of fresh vegetables and fruits, lean proteins like fish and legumes, and high-fiber whole grains. All of them blunt the post-prandial spike. "To some degree it kind of highlights why some dietary components are healthy for you," says O'Keefe.

Regardless of its benefits, healthy food can leave you feeling unsatisfied if you're used to eating junk. Junk food distorts a person's hormonal profile, says O'Keefe. Note, for example, the previously mentioned drop in insulin that leaves a person hungry not long after eating a heavy meal. Studies suggest that fatty, sugary foods promote excretion of the stress hormone cortisol, which seems to further stimulate appetite for calorie-dense foods. And the big post-meal spikes in blood sugar are more likely in people who don't exercise or those who carry weight around their abdomen. All of it makes it tough for people to stop eating junk food once they're in the habit. "The more you eat it the more you crave it. It becomes a vicious cycle," says O'Keefe. The solution? "I tell people they should get a home glucose monitor," he says. Then you can see immediately what your meals are doing to your body. It may help you stick to your plan to eat well, too. "You can improve your health, basically, from hour to hour," he says.

http://www.time.com/time/health/article ... 44,00.html

[Country4ever]

I've always said "Carbs beget carbs", and for me, its soooo true. I am just now getting control of myself after falling off the wagon over the holidays. I just can't believe how my cravings skyrocket when I let myself eat sugar. Its a real problem for me.
I have a theory (one of my many)..........that our bodies LOVE sugar/fat, because in primitive times, those flavors meant life to people. They were supposed to crave it............but they could only get it probably once a week, and that was after working physically very hard to find rich sources of those things. Now, we can get them 24 hours a day... Unfortunately, our bodies still crave them. We still have primitive bodies in this modern, excessive world.
I do sooooooooo much better when I avoid carbs, but I get cravings that you just wouldn't believe, once I eat a little sugar. I swear its similar feelings to what addicts must feel when they need a fix.

[lawdognellie]

Lee Lee-

Has your doctor tested to see if you can even absorb the vitamin D? Apparently, deficiency can be caused if you have something that prevents you from absorbing it from your digestive tract. Also, if may indicate kidney problems, since the kidneys convert it. Just a thought....

Sarah

[socknitster]

Stalker,

That explains that whyI felt so bad yesterday afternoon and today. After an entire morning of cleaning the house like a mad woman, at 1pm I suddenly realized I had to pick my son up in a half hour (and had not eating lunch and I was utterly ravenous) I stopped thru a drive thru and grabbed a burger and fries in desperation. The rest of the day yesterday and even today I feel like complete crap. Even though I had salad, broccoli and relatively low fat meat for supper. I have to make sure I don't forget to eat my healthy snacks so I don't get that hungry again--there is nothing like the low blood sugar and hunger of pregnancy--it makes you do crazy things you wouldn't normally do!

Jen

[jbond]

I have a combination of fibro and clinical, bipolar depression. No manic phase, just down. I have a s 8, oasis and both mirage and puritan benett prongs.
There's a tremendous difference in the way I feel since I got the cpap. I tried a heated humidifier as well as a hose sleeve, but both kept me awake.
I was a zombie before, dozed off going to the freeway in Atlanta once. When I first went to the Dr. at Northside he informed me that the coke I was drinking would keep me awake, and I told him that was what I had to do to function at all and especially while driving. Anyway I was having only 28 events per hr. and he really discouraged me from getting the machine in the first place. I insisted, Thank God, and got noticeably better. I had a combination of mixed and centrals. I also have a bipap,but believe my meds cause events (sleep meds) and don't think I could find a constant pressure that would work under all conditions.
There are always problems with fibro and depression. I Must take a ton of meds, and they constantly change. I understand that many of them may affect my sleep and the levels that I achieve while sleeping, so I opted for the auto titration machine in hopes that It would automatically adjust the pressure to my events. I certainly don't ever feel great, but would be MUCH worse off without my machine. I was only recently diagnosed with fibro, however my Dr. told me he'd been treating me for it for years!
A fibro support group was suggested and has been helpful.
John

[socknitster]

John,

30 events per hour is the number that indicates severe sleep apnea. While you may be in the moderate category, that is certainly severe enough to cause serious problems. Even those with mild apnea can be seriously impaired.

I'm going to make a strong recommendation that you search out another doctor and re-evaluate every part of your treatment and every medication. Two warning bells went off for me when reading your post: first of all bipolar isn't bipolar if you are never manic. It is major depression. Second, that a doctor who knows you are having 28 events per hour would try to convince you NOT to go on the machine. That just cannot be a good doctor unless you have some underlying medical condition that could be complicated by cpap, of which I am not aware of any.

Depression is a symptom of apnea. Falling asleep at the wheel is deadly serious. I don't think your doctor is taking any of this seriously enough. And while you may like and trust him or her, I don't think getting a second opinion could hurt anything or anyone and might just greatly improve your quality of life!

I RARELY would be so presumtuous as to make comments like this. But I truly hope you will consider my words. I mean you no harm. I only wish the best for you.

Jen

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