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foot.jpgI sit when others are standing…I lay when they sit...I walk when others are running…I stop while they keep going ~ Colleen

When you have a health disorder that doesn’t fit into a category of known symptoms, that can’t be detected through an x-ray or blood test, and that has no name, the medical profession will likely tell you that your problem is psychosomatic. In other words, ‘it’s all in your head.’

…My secret symptom of modern perversion…like Agent Orange or Gulf War Syndrome…IT’S ALL IN YOUR HEAD…Tell that to the babies with no limbs…to the vaccine injured kids…Tell that to the mercury in my mouth…or the hormone fed antibiotic filled mad cows…

I tend not to have great success resolving my health issues by way of doctors. I don’t like the fact that the side-effects of so many medical treatments are worse than the disease they are treating. But when I contracted Chronic Fatigue Syndrome (CFS) in the late 1970s, I was so alarmed to feel normal one day and then have to will myself to move the next, that I sought out a doctor and had some tests done. I didn’t know why I felt like I had a constant low grade flu, and the doctors I consulted didn’t know either. The term CFS hadn’t come into existence yet, and wouldn’t until the mid 1980s. There was nothing wrong with me, I was told.

I took matters into my own hands and began a long journey of research and trial and error to heal myself from what I first called “my low energy” problem. I could fill pages with the list of (mostly alternative) therapies, diets, and regiments that I’ve tried over the years. Everything helped, but nothing cured. And not only did I have to deal with living in a chronic compromised state of health, I had to explain to others why I couldn’t work full-time and why I had to meter out my activities. If I was going to be stuck with a disorder, I found myself wishing it was a more credible or visible one so that I wouldn’t be misunderstood or mistaken for being lazy.

It’s all in your head? Tell that to the Martin Luther King’s family…Tell it to the tribes downwind…or my overburdened immune system…Our bed is made…now we’re surely going to lie in it…and take our medicine for somebody’s profit…

Last week a comprehensive government-funded study confirmed that there is a biological basis for CFS. One of the leading scientist’s involved, who called the results “ground breaking,” said, “People with CFS are as impaired, as a whole, as people with MS, as people with AIDS, as people undergoing chemotherapy for cancer.”

According to the Associate Press, “Chronic Fatigue Syndrome appears to result from something in people’s genetic makeup that reduces their ability to deal with physical and psychological stress.” Researchers found that certain genetic sequence variations in five stress-moderating genes showed up consistently in chronic fatigue patients. They also found 5 subtypes of the syndrome. Some reports acknowledged that the study appears to confirm the existing idea that people develop CFS when events such as infections, injury and trauma disrupt the hypothalamic-pituitary adrenal axis, which is activated by physical and emotional stress.

I’m pleased that the medical establishment is beginning to seriously study a disorder that affects a known one million people in the U.S., mostly women (most CFS sufferers go undiagnosed). But after over 25 years of dealing with my own version of this limitation, I have finally stopped waiting for a cure. While I welcome more understanding into CFS, my focus is management, improvement, and acceptance.

I think of CFS as a leash that restricts my range of full movement. It’s a leash that I’m committed to increasing the length of, as much as I’m able to.


Iloved this post! I have fibromyalgia and it is close to cfs. I often have to explain myself to others.I know all we can do is manage it there is no cure and that stinks! I think some doctors think its all in our head too. I also have Bipolar so every ale I have seems to root from that! AHH I hop everyone gets more info on both of these diabilities!!

My mother has fibromyalgia and has faced so many of these issues, bless her heart. Somedays she is good and somedays she can't get out of bed. It took a long time for us to be able to deal with it like we should and support her.

My doc and I discussed CFS years ago because I stay so tired. I had the diabetes test and thyroid, etc. But they seem to think it is just my makeup....I have Mitral Valve Prolapse and my pulse rate lives at around 48-58. My blood pressure was 115 over 60/0r 70 before I ever quit smoking. Sometimes it gets so low now that I just want to lay down. I can feel sluggish and check it on Martin's machine and it read 90 over 50. Good for strokes bad for me and my metablolism.
Anyway I understand being tired when others don't understand. You don't want to be lazy so you actually have to push yourself to get everything done. Folks with high energy just don't get how lucky they are.

Hi Colleen...

I'm here from Michele today. I can't imagine how difficult it must be for you to deal with a disease that is like "invisible" to most people... I'm sure some just don't believe you. It must be hard. Hope you post some more info on this.

p.s. Can I borrow the quote from the beginning :D? I just loved it! And loved the picture as well...

For years I thought I had low blood sugar, but when I finally checked with a tester, it turned out I run on the high side. Blood sugar issues in general, whether high or low, can contribute to fatigue. So can thyroid issues. I've been treated for hyper thyroid before (yeah, something that showed up in a test) and continue to make thyroid anti-bodies (auto-immune) even though it's in the normal range now. Thyroid, like blood sugar, whether up or down can contribute to fatigue and they are just two faces of the same problem. Diabetes and Thyroid issues are both part of the endocrine system...which the immune system is also part of! To me, it's like looking for a needle in a haystack of symptoms and doctors are as lost...or more since they don't have the symptoms...as we are. I don't know much about fibromyalgia but I suspect it might be just another expression of chronic fatigue. At least they are very related.

I recommend the book "The Shwartzbein Princple" to everyone. Eating is the single biggest factor I can control in determining my energy level. This book, mostly about how we should eat, has it all down. I discovered most of what it says on my own through trial and error, but it was nice to be so confirmed, and the author backs it all up scientifically. Here's alink http://www.schwarzbeinprinciple.com/pgs/home.html

Two things I have learned from being a physician through the years:
1. Medicine is as much art as science.
2. There are libraries full of books full of things I don't know. And there are even more things I don't know that aren't even in the books yet.
That doesn't seem like much to learn and truthfully I learn something new every day, but as a physician I had to learn these two things to lower my own "stress" level.

My mom has fibromyalgia and a host of other ailments. I looked at the schwarzbein site and many of the principles are the same as with any good diabetic diet. Small meals and snacks more often. Good carbohydrates with high fiber such as lettuce, celery, broccoli, cauliflower etc. Protein and lots of water. This is also the principle of the South Beach diet craze. We discovered frozen soy beans this spring. They have such a great flavor and have protein, no cholesterol and good carbs with high fiber. Flavor similar to lima beans but better.

When I was in residency they were just finding a relationship between a chronic mononucleosis and chronic fatigue. It make sense that there would not be one simple explanation.

All I know is that if I ate pancakes for breakfast, I'd be ruined for the day and be back in bed before I took my last bite. The Schwartzbein diet is good for diabetics, but I think it's good for most everyone. My husband has problems with low blood sugar and a sugar addicition (bingeing and then purging with exercise and food restriction). I was trying to get him to eat like me for years. When he found the book and started eating as it suggested...it saved his ass...I mean pancreas!

I was so glad to see the emphasis off fat being a culprit (excepting hydrogenated ones, which are BAD) and some attention paid to our culture's love affair with carbohydrates. I need ONE at every serving, along with a portion of complete protein. The vegetarian diet was a disaster for me because tofu, beans, and rice are high in carb. To me, it all comes down to eating the way most of our mothers fed us before everything was so overly-processed and people got so obsessed with diets. The suppers my mother used to make is the way I need to eat now in order to be able to function.

Dessert? I can eat about anything now, but only about 4 bites!!! and only if I'm already well nourished. And if I'm going to invest in a dessert it better bev the the most awesome tasting one, othewise I won't waste my time. When I'm eating right, I'm not even tempted by cheap crappy desserts. I want the kind a French baker makes!

I see more and more people that are restricted by these kinds of disorders, much like I see more and more people that are diabetic. I think you've got it spot on with the lifestyle changes; something in the way we live now is causing these difficult problems people face.

And to me you come across as vivacious, both in person and in written word!

That is a great book and I feel good when I eat like that. good for you for taking care of yourself and not waiting for the establishment.

It is hard enough to deal with an illness the docs know all about - but CFS is a whole 'nother ballgame. My neighbor's boy has it and he can't work. Good that you now know it has a genetic basis.

What good news that there is some physical markers that may lead to fewer patients to being pooh-poohed what they know in their own bones is not normal.

Sorry I haven't visited in awhile Col. That aside, let me tell your readers how great you are at battling this puzzling disorder. I'm sure your meditation helps, especially now that it's been found out that stress is a factor. And knowing yourself is a big step in the right direction.
And yes, it's great that they are finally paying attention.

I know what you mean, my dr. recently refused to refer me to a specialist (I have to wait another month before I'll be granted that "luxury") then told me to stop taking one med when I mentioned a new symptom I had that I think is a side effect (I was asking to try a different med not take myself off!), and then when I said I really didn't think it would be good for me to stop taking that one, doc suggested I stop taking a different one. I felt like saying, "I'm not some guinnea pig!"

ugh. I think doctors don't like it when we know what is wrong with us and they can't see it or understand it. like they resent us for it or something.

Anyway, I'm glad they are starting to catch on in some ways on some things.

On the bright side, your quote is fantastic, you expressed something that even those of us without CFS feel. What a gift you have for words.

I am bipolar and often find myself with the same issue of explaining myself to those who can't seem to understand. More research is a great thing.. Cure..highly unlikely..But atleast there is attention on the subject..

Collen, I went to the Schwartzbein site as you suggested on my blog and found it to be very a informative and highly practical diet to follow, similar in nature to Phase III on the south beach diet as well.
Like you, i've had to do a lot of research on the topic and I've found, through through trial and error, what works best for my fatigue and sugar problems. Sugar is definitely a culprit in the process.
I feel much better when I'm able to eat moderate amounts of healthy protein throughout the day, as well as a variety of vegetables, salads and so forth. White Potatoes, white breads and junk food, for the most part, have fallen by the wayside. You mentioned pancakes and I had to smile, because they are a Sunday morning tradition for my family. Now, they're a once in a while treat.

Good luck to you in the process of allowing that leash to stretch... a little at a time.

Thanks to all for the thoughtful comments. With this, I've always known stress is a factor. With CFS it's like your body is stuck in 2nd or 3rd gear and never in neutral and it feels worn out from running like that. Stress for me might be doing 2 events in one day. I can't do stuff back to back. The stress is internal. As for the diet and book, I don't follow diets, I just eat in a similiar way that this book recommends.

Leslie, thanks for your comment. Happily, CFS doesn't change my personality. Most people have no idea. I'm not sick. I can do anything anyone else can. I just have to rest inbetween and can get sensory overload pretty quickly.

I admire your courage. Keep strong.

I have had Fibro/CFS for 17 years (since age 35), and diabetes 38. I've been teaching 1/2 time since '91 and last year I discovered O had some liver abnormalities and hypo-active thyroid, and then had a heart attack this past March and had a stent put in.

All this makes me really tired and sore! I've been through the cardio-rehab and am supposedly in good shape but am finding all the exercise they want you to do is very tricky.
I need to gradually get conditioned and I have a hard time with my muscles recovering. I can't take too much tylenol due to the liver and no Ibru due to the heart! And my sugar does the see-saw thing a few times a day.

I've never dealt with so much, but, I'm the same as you, outgoing, very upbeat and animated, and people just can't believe I'm not that healthy.

I still love to write, socialize and connect with kids so I guess I'll be doing a lot of that this year.

I don't think I can ever return to teaching, even 1/2 time as it is so much work and stress. Only 3 more years until I retire anyway.

Thanks for your visit! Glad I returned it!

Ruth (from north of Toronto, Ontario, Canada!)

A wonderful post about CFIDS. Yes, it's a tether. Like you, in the first years I tried everything anybody suggested , that I read about or oould think of. Like you, any meds generally made the problem worse. I'm better and some natural things and one med help the symptoms, but nothing cures. I was just interviewed for an article , mainly about poetry but the role cFIDS plays in my life is part of it, that will be in a MiPo publication. I'll be sure to alert you when it comes out.


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