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.
FIBROMYALGIA/CFS: PICTURING THE INVISIBLE
"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.
MEDICAL TESTING:
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.
RESEARCH:
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).
CURES?
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,
Katha