Fibromyalgia/CFS: Picturing the Invisible

I posted this on my FB page to let people know a few things about our suffering since most think it's only about slight pain and fatigue. They always underestimate the impact. My write-up is a little bit heavy but one day when I'm able I'll write something simpler with real, personal anecdotes.


"What is the sound of one hand clapping?" . . . so goes the famous Zen koan, meant to put the mind into a sort of void from which wisdom may be born.

So it is with other things in life, I've found. Things which defy all logic and our frames of reference. Things which throw us into an unimaginable place we have no words for.

This is my best effort to shed some light on a mystifying illness which has gone misunderstood for too long. Both conventional and holistic treatments hardly scratch the surface, and yet it is more disabling than most cases of multiple sclerosis and diabetes. It deranges the lives of countless individuals who are some of the most vibrant, positive, humorous, educated, and pro-active people you could hope to meet. I have several theories as to the cause(s) and my own insights as to remedies and/or possible cures I'll add at the end. Patient testimonials abound but for now I'm just giving an outline.

People who have lead healthy physical lives with little exposure to the handicapped or sick population will generally have more trouble with what I'm about to describe.

For the purposes of this discussion I'm going to combine FM with CFS (chronic fatigue syndrome) because the two are usually difficult to separate. My information is mostly based on my own and others' experiences - people I know personally and online, as well as a few good doctors.

When I think of all the ignorance surrounding fibromyalgia, chronic fatigue syndrome or myalgic encephalomyelitis (M.E.) as it's called in Europe, I'm grateful because it makes me think that maybe it's not so epidemic after all. However, recent estimates are millions of Americans have it. My purpose in writing here is to inform people of FM's disabling, life-altering symptoms which go far beyond pain. The Lyrica commercials minimize the dysfunction and misinform the public, although this medicine is a pretty good alternative to opioids. If everyone had any degree of this problem our society would have collapsed a long time ago. Personally I'm very concerned about the increase in all the new diseases, most of which affect the nervous system in various negative ways.

Most of the FM/CFS symptoms are peculiar to those with the diagnosis although they do have certain things in common with other conditions. If this sounds contradictory please keep reading. :o

The reason we sufferers don't like to tell people about all this is because 1) The long list of symptoms is met with disbelief 2) It has to be seen or lived to be believed; ridicule adding insult to injury 3) Denial from oneself and people who deal with it second-hand. 4) Sympathy doesn't help.

Acceptance does.

Then there is the infamous response when one attempts to describe the experience, "Oh but you look so well!"

At funerals, people can often be heard saying that a well-groomed corpse looks "good", too. My point here is that there's often a huge gap between the subjective and objective.

Imagine being told by a doctor that you're malingering or in need of psychiatric care when you have just broken your leg or you're suffering from a migraine. Somehow you have to make room for the shock of this insult and look for someone more competent. If you're lucky, his/her ego will at least allow him/her to make the psychiatric recommendation in the nicest way possible, as you try to imagine coming up with the energy to try to find a non-psychiatric doctor who did not graduate toward the bottom of his or her class. Most aren't all this bad, but this still happens.

What is Fibromyalgia?

Fibromyalgia is a neurological illness. Therefore, everything from the brain to the peripheral nervous system (muscles) is affected. The pain ranges from all-over achiness to neuropathy. Neuropathy includes feelings of "shooting pains", weakness, numbness, and "pins & needles". (dysesthesias and paresthesias). For many, the nervous dysfunction affects the GI tract and other internal structures since they too are dependent on healthy nerves.

Fatigue, of a degree difficult to describe, is one of the main fibromyalgia complaints, second only to pain. I would describe this fatigue as an overpowering need to rest, more than sleep, and for many it will double the normal hours spent horizontal. This extra rest is necessary but doesn't begin to restore normal function. The nervous system seems overcharged, sounds and visual stimuli add to the pain, as they would be for someone with migraines.

Other descriptions you'll find are more understandable such as sleep disturbances, depression, balance problems, and sometimes low grade fevers. This is just the starter list I'm giving you. See what I mean about disbelief?

Pain and fatigue are accompanied by so-called "brain fog" or cognitive dysfunction. This is actually measurable by SPECT scan but not MRI. Pain, brain fog, and fatigue are the defining characteristics of this illness. The brain fog includes problems with speech, vision, orientation, memory, etc.


Diagnostic testing should be done to exclude rheumatological diseases, multiple sclerosis, and Lyme disease (not really excludable by current methods), to mention a few. FMers almost always pass their medical workups just as a healthy person would; if only doctors would learn to measure behavior instead of expensive tests, take patients at their word, and communicate with family members, then we would have a more humaine healing culture.

At the very least this illness has been a lesson in humility to the medical community which has become too dependent on lab work and weak on common sense.

Legal & Government Recognition:

Most people I know with FM/CFS are eventually unable to work or work a minimum of hours. Just taking care of one's housework, paperwork, etc. must be done with measured efforts. This degree of impairment sometimes results in homelessness and worse.

Even the CDC and social security disability reluctantly recognize the problems thanks to the combined efforts of patients, lawyers, advocates, and research organizations. So, SS disability is often awarded, though it's difficult as with anything dealing with government benefits.


1) Numerous university studies have been conducted looking for retroviruses such as AIDS but so far these are inconclusive. A retrovirus doesn't go away because it invades the DNA. This is still a possible cause because viruses are getting "smarter" and they have learned how to hide from the immune system.

2) There is also the possibility that FM represents a variant of Lyme disease, an unusual microbe, as it also affects the nervous system and is a new disease. Lyme disease testing is notoriously unreliable and most cases go undiagnosable by blood tests.

3) Toxins + genetic influences: Primarily, any combination of GMO foods, forced fluoridation and heavy metal poisoning through dental work, vaccines, and many other routes. There are no studies to support that toxins in any quantity are just fine inside of anyone, but we do know that some people have more trouble clearing toxins due to their genes.

A friend of mine made me aware of the fact that the Swedish government has controlled mercury exposure the best because their genetic makeup seems to be the most susceptible to holding onto these toxins. Virtually everyone I meet with FM is fair-skinned.

Commonly prescribed and frequently used treatments: NSAIDS, Duloxetine; Pregabalin; Milnacipran; Gabapentin; Tramadol; Cyclobenzaprine; Amitriptyline; Hydrocodone-Acetaminophen; Naltrexone; Venlafaxine; Zolpidem; Carisoprodol; Meloxicam; morphine; and many other things for symptom control.

Long-term opioids simply do not work for most and must be taken sporadically or not at all.

HOLISTIC TREATMENTS: Dietary improvements, light exercise for those who aren't bedridden, alkaline balancing, nutritional supplements, liver and colon cleanses, are helpful and in fact necessary to apply, but not curative. Acupuncture in addition to these things holds more promise but the practitioner must be excellent. Most people cannot afford it.

Here are some data from just one online support group:

25,965 patients have this condition

685 New patients joined this month

Distribution of females vs. males

Gender: 95% Females, 5% Males - As I mentioned, the vast majority are also fair-skinned (genetic component).


Medical science as we know it has failed us, except when it comes to mechanical procedures, and I see nothing changing as far as that goes. Holistic medicine has some good effect but is limited, and this is hard for the idealists to admit. So I'll be exploring a more metaphysical approach, as my own energy and knowledge allow.

Metaphysics is really not holistic. It's beyond even that. This involves getting an understanding of what happened before the onset of illness; whether permanent remission is actually in order; and then infusion of pure energy after removal of negative energy or rearrangement of bad energetic patterns. There is much to learn and only a few to learn it from.

Those who struggle walk on egg shells, vocalizing the need for recognition, seeking long-term treatments and temporary relief, coping with practical realities such as financial deprivation, and being positive and forgiving at every moment, lest anger and depression drain us even further. We tend to grieve for that which we've lost but this is complicated by not knowing for sure whether we might not one day find our way back. Deep inside our souls, though, we know we can never come through it and be as we would have been. That's all right though, because the culture of the status quo now looks as surreal to us as we looked to it.

Wishing all compassion, love and enlightenment,



Thank you for this Katha. It's awesome! You've captured it nicely. I find it so hard to describe what life is like with fms/cfs. Are you going to write a book on fms/cfs?


Thanks. I don't know about a book. It would have to be a general awareness book because I can't espouse this or that theory or treatment - I consider them all. What might be more effective for educating people would be magazine/internet articles, flyers for health professionals, etc.

I do enjoy writing though and like I said I think that brief testimonials would really pack a punch if I could borrow some with real names and photos.



Thank you for taking the time to write this and share it with us. It was it very educational and I learned a lot from it. I don't know how you managed to find all of this information as what is written about fibro is scant. I appreciate anyone who gives thought to this mysterious disease and makes it more accessible to people. I wish that many medical professionals would put the time in to write about it. My rheumatologist states that a lot of research is currently going on regarding fibro and is optimistic that better drugs will be available within 5 years. Now if only they could find the cause of fibro and learn how to stop it from occurring...

Again, thank you for this article. I'm going to save it and reference it in the future.

I think you're right about how to best reach people. Even articles in the Reader's Digest would reach a lot of people and inform them. I think you're def. onto something.

I'd be willing to give a testimonial if you pursue that avenue.

Wow Katha, my friend, this is quiet a piece of work! Surely just the first page of the journal you could write, but very informative and powerful! I had never heard of the genetic dispostion of the fair skinned, but thinking of the ones I know face to face who battle it, they are fair skinned by majority.

It also seems that something 'awakens' this predisposition, and the thoughts on that are endless. I have posted a link about autoimmunity on several threads that somewhat tie into these ideas.

The above link discusses the allergies which are an autoimmune response, the heredity tendancies, not as beautifully as yours by any means, but not bad.

This is a great post, we all need to vent, complain, let loose of things that we cannot discuss elsewhere, but we also need to look at the research, self and shared education of what we do know, what we are searching to know, and how we will get there.

Katha, always a pleasure!


Thank you all for your kind comments on my paper. I just feel that someone needs to find the energy to get some literature out there, and yet I know I'm not up on it enough. What I wrote is simply what I've gathered; no formal research so I didn't need footnotes.

How about starting with a simpler, shorter flyer for friends and family members, with the emphasis on getting them into our moccasins insofar as that might be possible with some of them? Including those brief anecdotes from members??

I'll leave out the metaphysics and maybe replace the Zen koan analogy with a picture of moccasins : o - Katha

Thanks Susan - when I see someone on here who is darker skinned (I find that even olive-skinned people are protected from FM/CFS but they do get other things) I tend to think they need to keep pursuing a diagnosis of lupus or something else.

In the future, when the mood hits me, I'll definitely consult you for essential missing elements - symptoms such as allergies and things I don't have. A more complex article would definitely include the possibility of some odd type of autoimmunity which tests negative in FMers. Thanks for all your heartfelt work with us. -

Thanks for offering your testimonials. I would be looking for brief, succinct statements on each aspect of FM: Pain, fatigue, and brain fog, and lifestyle limitations to name the main things.

Hope you are coping well.

xx -Katha

Thank you Josephina for your comments. Hope you have a good coping plan in place and a supportive lifestyle arrangement.

xx Take care.

Hi Katha,

I read an interesting book entitled 'The mysteries of the Great Pyramid' by renowned author Peter Tompkin, perhaps better know as co-author of 'The Secret Life of Plants'. In his research he found that early Arab exploration of the pyramid found that a huge prismatic stone had been dislodged from the ceiling of a passage. It seemed to the Arab scholar that it had fallen from the ceilling of the Desending Passage.

I cannot find the exact wording of the remainder of this but a scientist, explorer decided to recreate this prism by the description and do experiments, it could have been astronomical, but as I recall, by accident he discovered that the prism changed if a cat happened to die under it or a living man moved the dead cat while under it, or a basket of food was left under it. He found that the measure of health, or the 'radiance' of living, ill, or dead man, animal, and food by the changes in the prism hanging above, could be determined.

Here is where I am heading, that generations have now been raised on TV dinners on aluminum trays, microwaveable food contained in what we now know as toxic plastic when nuked, junk food, processed foods full of additives, preservatives, chemicals, genetically altered crop seeds... This has to be a factor, perhaps they present a reason why some have fallen ill, while some remain healthy. My Rheumatologist insists it is genetic, and surely he is correct, but just what are all the factors involved in 'awakening it'?

Regardless of being a carnivore, fish eater, vegetarian, vegan, we all need to try to eat and drink as much radiant food as you can, it can only do us good.

Sorry I don't have time to find a better account, and it has been too long since I referred to this wonderful part of my library, but it is a part of what we are discussing, or a correlation that came to mind. Allergic and I recently e-mailed for days on this very topic. Surely another project to consider.

Wish I had more time before presenting this but I have the great grandson, and in addition, the grandson on the way, my recollection may not be perfectly accurate, but close!

The Secret Life of Plants is also an amazing book, as are, The Magic of Obelisks, Mysteries of the Mayan Pyramids and The Secret Life of Nature by this wonderfully prolific man, it is entirely possible that I have forgotten a few. I cried when I heard he had died, the world will surely miss him, I know I will. I hope to have read and collected all of his books, and look forward to reading them again.

Wishing you all WELL,


Hi Susan,

Thanks for the info on Tompkins and the pyramids. I've been doing related metaphysical research from another well-known author, Dunvalo Melchizedek, and sacred geometry which he teaches in meditation workshops and books. When I have time I will summarize what I've learned of his healing techniques and spiritual advancement techings, which is directly related to pyramidal energies. I only tell you that it's called sacred geometry in case maybe you didn't know, and has many applications for healing and elevation of consciousness. I feel even studying the concepts without the formal meditation has already helped my energy levels.

Talk to you soon,


Will write more soon, thanks for the Tompkins reference.

God Bless -



Thank you so much for your explanation of FM, the extreme fatigue, neuropathy, and all the symptoms you have named. I have never even told my brothers, sister, or my son and they certainly don't ask me how I am feeling.My boyfriend has stuck with through this since the last part of 2005.Life as a registered nurse is certainly not like it was and that is extremely hard to except.I feel that a tetanus vaccine caused this to happen to me at the hospital that I worked at.I wasn't sick before I took the vaccine.The lawyer that I got was not that good & my family dr. didn't believe me, but did ask me has if I had taken a flu vaccine.I was diagnosed fairly soon after I became ill. It is a neurological disorder and really think it should be diagnosed by neurologist.This is an old syndrome, they just changed the name to fibro. At the present time only 3 medications are approved for the syndrome and they are a far cry from the relief that a patient needs to live a productive life. The medical community indeed has failed us.

Best wishes to you,


You are so right about fresh home-grown veggies, I stuff them in our grandkids, as well as myself in hopes of keeping up with my grandkids!

When I visited Egypt in the 1980's there were several Physicians, from around the globe, with notebooks or video cameras in hand, spending an incredible amount of time on the temple wall that showed their medical knowledge, and also in the Cairo museum captivated with the medical contributions given the world by ancient Egypt, they were filling teeth, inventing forceps, and even did brain surgery, to name just a few!

The vast knowlegde of that culture has captivated me all of my life!

Dear Daphne,

I understand not telling your family members about this illness since it's so hard to put into words the true impact, and the feeling that some of them will make light of it or give you grief in some other way. When that happens the emotional impact makes things seem much worse, doesn't it?

However since your boyfriend seems compassionate you might consider having him read some lit at a level he can handle, if he hasn't yet. With friends and family, the trick is to get them to accept without direct understanding - not an easy thing for any of us to do.

The fatigue component of my case has been terrible up until I started MAOIs. So, how do you document the fact you're spending 12+ hours horizontal in addition to a night's sleep??

I also had a bad lawyer, bad experiences with treating doctors and sos didn't win SSDI on the 1st hearing; waiting on another one and not looking forward to a repeat should it happen.

It's interesting you can date the onset of your FM to a vaccine; most can't trace it back to anything in particular. A bout with a virus could do it but most people get a couple per year and yet the symptoms wouldn't follow immediately - same goes for dental metal exposure and other things.

Thanks for your input. Hugs XX


So Josephina, like me, ours was probably trauma induced, mine was the third time being rear-ended.

Pudgey, I have read rather extensively of the vaccine link to things such as autism, and how they came to those conclusions, so why could this not have triggered an autoimmune response as well? Lets be honest, if a vaccine is made with an ingredient of an unwell animal, how could it not?? But there also may be a 'predisposed' to this type of condition/disease, then surely this could have triggered it.

I once spoke to a Chiropractor who lost his brother to cancer, he said that cancer cells are always present in our body, and one day something sets it into motion, toxic exposure, trauma, continuous stress... I am starting to think of this as the same, but I have no medical training, so I can only suppose.

Wishing you well,


Now there is a link to make you think, but without these vaccines, we would be in such big trouble! they go with the hope that the overwelming majority will over come reaction. They cannot wait until we are well and rested, if we are injured by stepping on a rusty nail and not had a tetanus shot within the timeline.

Man has tampered with nature so bad and for so long it has resulted in more and more opportunist organisms that are getting stronger, while humans get weaker and less able to defend against them.

I don't think the answer will be from modern medicine altogether. If there just wasn't so much greed in the world, we might just get somewhere with it all. Big Pharm is adding fuel to the fire.

It amazes me still just how much the human body has withstood all these years, being polluted with just so many chemicals and stressers. The list is endless. I can't imagine it being just one thing that is causing all the illness. 'Don't mess with Mother Nature' is an understatement.

I can relate. Here in Arizona we deal with wildfires every summer and it gags me to no end. I go out back for a minute and I'm choking, eyes watering. Stay inside. Only way to avoid it.

Hi pudgey84, I am also an RN, I struggled for the past 6 months, taking one FMLA day a week, I worked in a very busy surgical service area 10-11 hr days, 4 days a week, I finally crashed, after being hospitalized with diverticulitis & my brothers sudden death, I am still out on disability, my full time job has been posted & my employer says when I get a note saying I can work, I can apply for other positions, I loved my job, it’s so hard to make the change & I wonder if I will ever find a part time nursing job that I can do, after being off for 2 months I finally feel a little better, do u work ? Any advice ? I was considering disability, but I know I already miss the pt contact , what’s a nurse with fibro to do ?