A detailed guide to Chronic Fatigue Syndrome (CFS), including its symptoms, causes, and effective treatment strategies to improve energy and well-being.
“Everybody gets so much information all day long that they lose their common sense”, Gertrude Stein
To write that I am frustrated, angry, and discouraged over the recent hoopla this week in the news from the U.S. Institute of Medicine (IOM) report on Chronic Fatigue Syndrome is to be putting it mildly. As is usual with someone who has CFS and fibromyalgia (FM) I awoke several times last night. During those wakeful periods, I wanted to write this blog with great haste in protest for whoever would read this rant from me. I have to admonish my readers that the report is not to be viewed with great enthusiasm. The IOM state that CFS should now be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such and for which a medication can be taken and our conditions would be cured. But as I have repeatedly written over many years, this cluster of symptoms that make up a syndrome cannot be ‘cured’ with the usual allopathic or alternative medicines. It is far more complex than that. Hunts for viral, bacterial, and hormonal causes have been ongoing for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?
The first indication of this awakening of the American health experts to the reality of CFS and FMS came to my attention from an article by André Picard, whose articles I respect and admire tremendously. It is from the newspaper The Globe and Mail, Tuesday, February 17, 2015 A11, and is in regard to Chronic Fatigue. While the f word (fibromyalgia) is only mentioned once it is nonetheless aligned with chronic fatigue and I have conjoined the two for many years. In fact, there may be quadruplets involved here if we combine multiple chemical sensitivities (mentioned by Picard) and PTSD. Happily, Picard calls CFS and FMS a ‘disorder’ in spite of the fact that the U.S. Institute of Medicine has reported CFS as a disease. I continue to call it a ‘dis-ease’ or a syndrome and will not give in to the claim or possibility of a microbe causing disease, in spite of the fact that it does indeed cause secondary illnesses.
The second sighting of this American report was noted on February 21, 2015, on the CBC news. So now, after decades of the suffering of millions of people worldwide, the voices of those of us with several of these invisible, but alike, diseases will be legitimated. Furthermore, the way in which it is to be a bona fide condition worthy of being taken seriously is to call it an actual disease.
So, how closely are CFS and FMS related? I have debated this for many years. I have searched, researched, and contemplated the relationships between the two as well as what I once called Gulf War Syndrome, shell shock, battle fatigue (now called Post Traumatic Stress Disorder) and the elusive Multiple Chemical Sensitivities- all of which are invisible, said to affect women more commonly than men (with the notable exception of PTSD) and cannot be diagnosed with standard medical tests. My conclusion for all of these disorders is the same as it has been since my book and all the blogs I have since written. THESE ARE CONDITIONS THAT ARE CAUSED BY A HYPER-AROUSED CENTRAL NERVOUS SYSTEM IS HIGHLY SENSITIVE PERSONS. These disorders are not exclusive to highly sensitive women but to men and children as well.
It is important to discuss the commonalities among the four diseases of CFS, FMS, MCC, and PTSD. I will do so using the four main ‘symptoms’ discussed in the Picard article:
1) An inability to engage in pre-illness levels of activity that persists for at least six months, accompanied by fatigue. While generally this ‘pre-illness‘ is predominantly applied to CFS, the other conditions can be not only related to illness but are often attributed to traumatic events such as car accidents, violence, and situations that cause the nervous system to go into hyper-arousal.
2) The worsening of symptoms after any type of exertion (physical, mental or emotional). This symptom, post-exercise malaise, is seen as key. This symptom is highly evident in both CFS and FMS but can also be seen with MCC and PTSD.
3) Un-refreshing sleep. Therein lies a commonality among all the disorders.
4) Cognitive impairment. Once again the four diseases experience this to a greater or lesser extent. Also known as “brain fog”.
5) The inability to stand upright for other than short periods of time, a symptom is known as “orthostatic intolerance” which is extremely common in CFS and FMS and may or may not affect the other two disorders.
While it might seem as though there is a great difference between MCC and FMS to CFS and PTSD, in fact, the following is a list of the many symptoms of MCC and PTSD: muscle and joint aches and pains, fatigue, rashes, itching, memory loss, and confusion, all of which are common with the other three mentioned syndromes. As with the other disorders, anxiety, panic, inability to tolerate loud noises, bright lights, excitement, highly reactive to smells, frequent digestive disorders, and so on are the exact reported symptoms of all four. In short, all the mentioned diseases are similar to such an extent that it is difficult to differentiate among them. They remain controversial, lack any kinds of standard tests to help with treatment, and have a gender bias (with the notable exception of PTSD, because of the nature of the higher number of men in the military who have faced combat). One important distinction, however, is that people with CFS have been known to recover, unlike FMS sufferers.
These are all Medically Unexplained Illnesses( my italics; also see other blogs where I have discussed this issue)with symptoms that are common to all and cannot be separated from one another. As I have discussed repeatedly, the realm of study and research for these conditions should be with the neuroscientists who have made tremendous strides with brain studies regarding pain and the brain, and various strategies for changing the brain. Among them which I seem to be presenting over and over again are: mindfulness meditation, light exercise, talk therapy, deep breathing, avoiding caffeine, and especially helpful is taking on activities that are new to you, creative, repetitive, innovative, and enjoyable which will stimulate new neural pathways in the brain, and finally paying attention to situations which bring on added stress and living in as calm an environment as possible.
I liken the nervous system of those of us with all these invisible syndromes to an elastic band that has been stretched to its limit. We are never cured of this highly sensitive nervous system. Whether or not it is nature or nurture cannot be proven. We can only work with the hand we have been dealt. Almost, if not all of the hundreds of people, mostly women, whom I have heard from and made comments on this website, or interviewed personally have been overly empathetic, intuitive, and caregivers in one form or another. I have not been surprised at the number of nurses who have FMS and CFS, gay men, as well as other marginalized people whose lives have been filled with trauma. Some say that after a period of time CFS can be cured without lasting effects. I cannot attest to that, but I can say that those of us with FMS have lifelong challenges. I confess to not hearing from men in the military. I can only speculate that these are highly sensitive men whose nervous systems have been stretched beyond endurance.
So it seems that the IOM has been tasked by the U.S. Department of Health and Human Services, the National Institute of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, the Social Security Administration- all to examine the evidence base for CFS. What on earth are they to do? Are CFS and FMS just now being discovered? Have they ever read any of the comments on this and many other websites exploring the commonalities among all of us worldwide, suffering from these conditions which are so closely related? What do they hope to find that wasn’t explored decades ago? It is not a disease! There isn’t a cure for a permanently hyper-aroused nervous system, always on alert and hyper-vigilant. We are highly sensitive people who, as Elaine Aron discusses in her many books, are like canaries in a coal mine. ( Please note: Aron does not equate the conditions I have just discussed with the highly sensitive person; her extensive work is about the type of people we are and she does not discuss specific disorders associated with this type of person, instead she believes it is a ‘gift’ to be an HSP; the theoretical relationship is mine and I do not want to misrepresent her). We have rich and complex inner lives. We startle easily; we process sensory data differently than other people; our nervous systems differ from the general population. We are highly empathetic and often intuitive beyond what is usual. This entire trend to label us as a disease entity boggles my mind- when I am not in a state of anger. I have to remind myself to breathe…
“Open your heart to your suffering”, Toni Bernhard
There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’. Often thought of as malingering, hypochondriac, weak, attention-seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system that cannot sustain itself in a healthy manner any longer.
It is as though we have overstretched the central nervous system just as a rubber band might become less elastic after constant overstretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal.
In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue, and myriad of other symptoms with which we are faced.
I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be curedof the pain, fatigue, intense itching, depression, anxiety, nausea, flu-like symptoms, and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard:” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.
I want to encourage readers to read this book as the daily/yearly experiences of Toni Bernhard are so similar to many who write to me often (and painfully), wondering how to keep on keeping on. After reading her book I decided to practice her exercise which she calls “drop it”, similar to ‘letting go’. As my anxieties escalate during the day I deliberately think about the thought I am having at that moment then I consciously drop it.
I live with the focussed anxiety of having a flare-up from fibromyalgia/chronic fatigue, living with a huge painful herniated L4-5 disk, and worrying about having another heart attack, all the while knowing I must exercise at least 30 minutes a day in spite of the pain. So, for me, the anxieties are almost constant. Dropping the thought has been very helpful.
I can’t say it lasts a long time, but I have been keeping on track and repeating the phrase over and over. In short, as I have been writing about for years now- I am trying to change my brain and short circuit that trodden down path to another that is called ‘living in the moment, or ‘mindfulness meditation’.
I no longer speak of my fibromyalgia/chronic fatigue with health care professionals- the search for answers is fruitless. I can experience joy if I live in the moment and not look back to a life that I can barely remember- one without pain. I can not predict what tomorrow will bring. I only have it now.
There are many of us living with medically unexplained symptoms, such as those fibromyalgia/chronic fatigue, multiple chemical sensitivities, Gulf War illness, and post-traumatic stress disorders, most of which are also called somatization disorder, a label that can place us in the realm of psychiatric investigation and therefore denigrated by many health professionals.
As Toni Bernhard has written: “As you experience the unpleasant mental sensations of being treated in a dismissive manner by this medical person, instead of reacting with aversion, consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity– directing the sublime state at yourself”.
This is the essence of mindfulness meditation- being kind to ourselves- exploring our thoughts without criticism, without judgment. In the words of Jon Kabat-Zinn: “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally” (Wherever You Go There You Are).
There isn’t any other way for us to proceed: we can’t change our diagnoses by lamenting, ruminating, seeking one treatment after another, or depressing about our conditions. Now comes the difficult part- practice-practice-practice what I preach. Be kind to me and open my damaged heart to my suffering, without reproach or wishing for what cannot be!
How do I be confident using the cane in public when I look like an otherwise healthy, able-bodied person?
I can’t give you a direct definite answer to your question. But I will share a couple of things with you. When my oldest daughter was 13 she had surgery for scoliosis. She walked back to the surgery suite turning back, smiling and waving.
Totally secure in what she was doing. 13 1/2 hours later they came out and told me that she was paralyzed and would never walk again. Fortunately, God’s bigger than that. Three months later she was wheeled to the hospital doors and with the aid of some braces, she walked out to the car.
It took about two years of PT but she got to the point that she was able to put the wheelchair away and use two canes. Then later she went to one cane. She’s had 2 more major surgeries to stabilize her back and she now walks with a walker to help take some of the pressure torque off her spine. So never give up! Keep fighting!
The second thing that I want to share with you is my disability. I have a lung disease that requires me to be on high flow oxygen. For several years after being put on oxygen random strangers would walk up to me in Walmart and ask me why was I on oxygen?
I didn’t look sick! I spent a lot of time trying to explain things to people but it was really almost offensive. I don’t offend easily. But it bothered me enough that I got to the point where I started looking at people and asking Really!?! And what exactly does sick look like! There are many times that I’ve caught myself watching someone park in a handicapped space and get out of the car looking perfectly able.
I often wondered why they seemed to need a handicap spot. At some point, I made the connection and reminded myself that I had NO IDEA what their health issues were, and frankly, it was none of my business and not mine to judge. I take care of my own issues and usually find that I’m left with little time to squander on placing judgment on other people. It’s not my place to judge.
So my point is this. Do what you need to do to take the best care of yourself that you can. Don’t even worry about what other people are going to think! You won’t be able to do anything to change it anyway. People that are that worried about your health, they’re going to find something to be critical of no matter what you do.
Don’t waste your energy on them. You do the best that you can do to take as good of care of yourself as you can. It will help you in the long run and will remove some of your burden in the short run. Take care!
Let’s remember that despite all of our great science, we don’t fully understand either central sensitization or fibromyalgia. So the question is cute but unanswerable.
Central sensitization means that there is altered processing of sensation in the spinal cord and brain. Imagine you have an mp3 player and you plug it into an amplifier and then to some speakers. The mp3 player is like the tiny signals coming **constantly** from the nerves that touch all of your body. Central sensitization is when the amplifier is turned up. So various aspects of sensation are turned on high.
People with fibromyalgia have central sensitization. Their pain processing is amplified.
But central sensitization is just one kind of physiologic imbalance that shows up in fibromyalgia. People with fibromyalgia can also have a variety of other physiologic imbalances, depending on the person.
That includes immune system dysregulation, activation of inflammatory cells in the brain, dysregulation of hormones like cortisol or thyroid, irritable bowel syndrome, nutritional deficiencies, impaired energy production by mitochondria. Based on physiologic principles and some research, these imbalances are related to interlocking vicious cycles. Positive feedback loops that drive the physiology forward.
These are underlying physiologic issues that probably result in the syndrome of symptoms that we call fibromyalgia. In other words: brain fog, abdominal pain, constipation/diarrhea, painful muscles with minimal activity, fatigue, insomnia, and so on.
In my judgment, the complexity of fibromyalgia is the reason why there is so much difficulty with diagnosis and treatment. In conventional medicine, we get trained to look for one cause and one treatment for a problem.
Fibromyalgia appears to be a different thing. There are many different triggers that can start to shift physiology. And many different perpetuating factors that can permit or drive the cycle of imbalances.
In the meantime, people with fibromyalgia get to decide whether they want to be conservative and go with the conventional approach or to be more open-minded and go with an integrative approach. That means
1. A strictly conventional medicine approach, which says ‘you have central sensitization, we don’t know what causes it, do therapy and exercise and try Lyrica, Cymbalta, gabapentin, and so on. or
2. An integrative approach says, ‘there are a number of physiologic imbalances that are probably driving the symptoms. We can try the meds if you want. And for sure address mind-body variables and movement.
But also let’s help you shift your diet, heal your gastrointestinal barrier and biome, use botanicals and supplements to help sleep, balance your hormones, nourish your mitochondria, reduce stress, and so on’.
In my experience, the second one gets real results for more people.
My father drank heavily in the 1960s and both my parents smoked tobacco when I was conceived. As a child, I frequently had strep throat, bronchitis, and even pneumonia. Even at 2 two years old I remember being inside the incubator seeing the outline of my Mom and my uncle who came in to visit.
My teeth are stained from taking the antibiotic, Tetracycline as a young child. As I understand it this particular antibiotic is no longer given to young children because of the dental staining.
Additionally, I am a “DES Baby”. My Mom had 2 miscarriages before I was born. When my mother got pregnant with me, her OB doc prescribed DES in hopes that she might carry me to full term. Well, I’m here, but I only weighed 4lbs at birth. Back in the 1960s, preemie clothes were unheard of, so I wore baby doll clothes. Being small made me vulnerable.
As a child, I had unexplained aches and pains, migraines, sleep disorders, sensitivity to noise, light, and smells, emotional sensitivity, and restless legs. I thought I was different than other people. I still have these gremlins making life annoying sometimes.
My point is that I can look back and recognize symptoms I had growing up and into adulthood, middle age, and now at 53.
My theory is that one or more of those viruses I had, one or more antibiotics or cough/stomach meds or even a vaccine may have all contributed to fibromyalgia and its buddies. I think our food is filled with all kinds of processed ingredients that aren’t really natural, but rather artificial. The air we breathe is polluted and our water is something that has to be “treated” before it comes thru our faucets in our kitchen.
I believe stress in a developing child can get so extreme that it affects our nerves and the processes of our brains.
I can’t point to one single thing and know for sure if that particular thing caused my fibromyalgia but medical science still doesn’t know the cause. There are some very fundamental shared commonalities we seem to share.
You know this is the craziest thing I am going to talk about now…
I’m not sure what the percentage is, but I can tell you that I spent years taking Adderall for ADHD and then had to stop taking it when I got pregnant. During the hiatus from that medication, I was diagnosed with fibromyalgia.
After unsuccessful attempts at treating it with many of the same methods you mentioned, I decided that I was sick of being a test monkey and asked my doctor to put me back on the Adderall. This time around, not only did it manage my ADHD symptoms, but it also seemingly “cured” my fibro.
Being a stimulant medication, its purpose is to counteract the area of an ADHD patient’s brain that makes them feel restless and unfocused by “tricking” the brain into believing it has produced too much of its own stimulant, therefore making it produce the chemicals that calm.
While it still does this for me, it also cleared up the brain fog and mental sluggishness that accompanies fibro, but the best thing it’s done is make the pain tolerable so I can normally physically function. As you certainly know, with fibro, some days are worse than others, and it’s not as though this medication blocks the pain as an opiate does, rather, it keeps me so focused on the task at hand that it also distracts me from the pain.
Upon realizing this, I started doing things to help further lessen the background pain, such as yoga and taking daily vitamin B12 and folic acid supplements, as they support nerve health.
Adderall is not recognized as a pain management drug, and only a small handful of doctors currently acknowledge it as a treatment for fibromyalgia. It is a controlled substance with a high potential for abuse, so, doctors won’t prescribe it without a perfectly valid reason, and they usually require a clear EKG prior to prescribing because the stimulant property is sometimes hard on the heart muscle.
BUT, Adderall IS recognized as a treatment for chronic fatigue, so, if you approach your doctor after having utilized so many other medications unsuccessfully and specifically address the concern that the fatigue which accompanies your fibro is debilitating in nature, and you propose the idea of trying a stimulant, he or she may agree to prescribe it at a low dose on a trial run.
Be prepared, however, as it is a common practice for doctors to perform drug tests before and during treatment with a controlled substance to ensure a patient is not abusing it or any other drugs.
I’m certain this is a treatment that will not be appropriate for every person with fibro or other chronic pain disorders, but it has worked in this way for me and a decent handful of other people in our shoes. That being said, for how significantly my quality of life has improved, I firmly believe that it is a treatment that deserves consideration by doctors and sufferers alike.
Get your genes mapped. If you have either fibromyalgia or chronic fatigue it is probably most likely due to “Soft Tissue Calcification” which is caused by the body not excreting enough sulfur and phosphorus, which is caused by having genetic mutations like CBS 699 and SUOX mutations.
The treatment for these mutations right now is to eat a diet that is very low in sulfur and phosphorus and calcium and vitamin D because these will all lead to pain or chronicfatigue.
Also, it is important to supplement daily with a well-absorbed brand of magnesium citrate like Solgar magnesium citrate tablets, or CALM magnesium citrate powder by Natural Vitality that you dissolve in water and drink, or CALM magnesium citrate gummies that you just chew up.
Pick one of the three, depending on which would work best for you. They are all very well absorbed.
It is also very important to avoid vitamin D and calcium in both supplements and foods, so this also means to avoid multivitamins as they are all very high in calcium and vitamin D and only have unabsorbable magnesium in them (aka they usually contain magnesium oxide, which is only 4% bioavailable)
So ditch the D, calcium, and multi vibes, start taking magnesium citrate daily and avoid all foods high in sulfur, phosphorus, vitamin D, and calcium. And also avoid MSG and MSG chemicals like the plague.
Doing these things will help you to get rid of or lessen any fibromyalgia pain or chronic fatigue that you may have.
If you think I’m crazy, then all you have to do is try what I am saying for a couple of weeks (as it is not dangerous) and you should see your symptoms lessening.
And then to be absolutely sure, get your genes mapped to see if you have the CBS699 or SUOX (SUlfur OXidase) mutations.
See genetic genie dot org and 23andme dot com for more info. (It will cost about $250 to get this done or maybe less if 23andme is having a sale or if you buy more than one gene testing kit)
I had this done and it turns out that I have a lot of these mutations from both parents so my body cannot properly metabolize and excrete sulfur and phosphorus, and this causes excess sulfur and phosphorus in all my cells which causes both pain and fatigue in the cells and calcium and vitamin D make the pain worse.
So as long as I stay away from all foods high in sulfur and phosphorus and avoid calcium and vitamin D and all MSG chemicals, I am pain–free.
If I eat anything that is high in sulfur and phosphorus or high in calcium or vitamin D, I will get bad pain within half an hour of ingestion. Black pepper and foods high in oxalic acid will also cause pain, so I avoid those as well.
And I also avoid zinc supplements since zinc strengthens the glutamate response in the body.
At any rate, this is something for others to try and see if it works. It is cheap and easy and safe. And as they say, the proof is in the pudding.
I no longer have bad fibromyalgia pain and before, I had such bad pain that I couldn’t even sit down. So this just might work for others as well. I can’t be the only one with these mutations. And I know I’m not because both sides of my family carry them and have all sorts of medical issues.
It’s hard to address them all at once. I’ll just mention that your issue with panic attacks is probably both psychological as well as physiological. From your wording, it sounds as though you experienced anticipatory anxiety about having a panic attack which then operates in a self-fulfilling prophecy fashion to trigger a panic attack.
So there’s an initial cognitive element, which then produces a physiological result. That’s pretty common but also points to the fact that at the very least, you’ll need to use a two-pronged approach to resolving your issues with panic: your psychological tendency to talk to yourself in catastrophic terms (i.e. “it would be awful, terrible and unbearable for me to have a panic attack this morning.
The fact that I have them must mean there’s something seriously wrong with me; I must be defective and so not measure up to the other people out there who don’t have my problem”) and also the physiological effects of tensing up in reaction to what you’re telling yourself and so beginning to hyperventilate as well as release adrenalin into your system.
As far as dealing with the cognitive or psychological side of your problem, you would be best serving yourself if you can begin to challenge your catastrophic thinking: i.e. “where’s the evidence that having a panic attack this morning is truly awful and horrible and not simply an uncomfortable, inconvenient pain in the ass? Where’s the evidence I can’t bear to have another panic attack?
I’ve had them multiple times before and I’m still here. While there’s evidence I don’t like panic attacks, there’s no evidence I can’t bear them. I can, even if I’m strongly uncomfortable having them. Where’s the evidence there’s something truly wrong with me compared to other people? Do I fully know the lives of other people to be able to make that kind of comparison?
Am I saying I’m the only person to have this problem or that others who share this problem with me are somehow inferior to other people who don’t have this problem? Where’s the proof for this assertion? And if other people, say my best friend, isn’t inferior because of her problems, why do I claim I am?”
Things like this.
Challenging your catastrophic thinking, whatever it is, will begin to help you calm down, decrease your physiological reactions and begin to move you out of the fight-or-flight response which is a trigger for many panic attacks.
In going about this cognitive house cleaning, I’d recommend you find a local therapist skilled in rational-emotive-behavioral therapy, otherwise known as REBT. You can also begin to work on this yourself, with the help of books such as “Overcoming Destructive Beliefs, Feelings and Behaviors” by Albert Ellis, the founder of REBT, or another of his many books, such as “How to Stubbornly Refuse to Make Yourself Miserable About Anything. Yes, Anything!”
On the physiological side of things, apart from your thyroid condition (Hashimoto’s or hypothyroidism?), much of what you’re describing you’re going through is made significantly worse by chronic muscle tension and breathing faster than your body actually requires. This is a common problem with most people in our hectic, stress-filled society (and depending on your students, with being a high school teacher).
Here’s a copy of what I wrote in an earlier post. For more details, I recommend the books “Breathe to Heal,” by Sasha Yakoleva as well as the “Buteyko Breathing Course Manual” by Dr. Eduard Reuvers.
Before I retired as a psychotherapist and counselor in various hospital and university settings, I treated hundreds of people with panic disorder, with I’d say roughly a 90%+ success rate among those who actually followed my suggestions.
On the physiological side: panic attacks are the “little brother” or the “little sister” of asthma attacks. They’re caused by what’s called “subclinical hyperventilation,” which is a fancy way of saying they’re caused by the person unconsciously breathing faster than what his or her body requires.
Here’s how you tell where you’re at in this: breathe normally for a while as you always do and when you’re ready, exhale normally (don’t try to “empty your lungs”) and as soon as you’re done exhaling, hold your breath exhaled while timing yourself.
You’ll feel an initial bump of discomfort and then that discomfort will plateau for a while, then all of a sudden your discomfort will start to rise very quickly. As soon as you feel your discomfort starting to take off after that plateau period, inhale normally and note how long you were comfortably able to hold your breath exhaled.
To put your Diagnostic Pause in context, let’s say you ended up with a Diagnostic Pause of 15 seconds. That’s 1/4 the optimal time. That tells you that you’re unconsciously breathing four times faster than what your body requires; more than that when you’re stressed. Can you now understand why your body is sensitized towards panic attacks?
This is normal in our stressed society. As we live our stressful lives day after day, the inner part of our brain adjusts its resting breath setting, if you will, to accommodate that more stressful lifestyle. It’s similar to setting the idle speed on a car’s engine to a much higher RPM than what the default factory setting is.
Your job, once you find this out, is to now recalibrate your body’s breathing rate back down to its original default setting. Over time, as you slow down your breathing, your brain will reset itself back to its original breath rate.
Now that you know what I like to call your Diagnostic Pause (and others call the Control Pause), to begin to resolve the physiological side of your panic attacks, begin to now practice holding your breath exhaled for about two seconds longer than your Diagnostic Pause.
So if your diagnostic pause was ten seconds, for instance, now practice holding your breath for twelve seconds, slightly uncomfortable but not too much. This is now your Training Pause.
Do this three to five times a session, three to five sessions a day.
When you’re completely comfortable holding your breath for twelve seconds, increase your Training Pause to fourteen seconds, then sixteen, and so on. Make sure you don’t push yourself here.
Pushing yourself beyond a mild discomfort can result in reactively hyperventilating when you stop and might even precipitate a panic attack.
Not good.
Typically, it takes a person two to three weeks to go from their initial Diagnostic Pause up to being able to comfortably hold their breath exhaled for 30 seconds. At the 30 second point you’ll be functionally “immune” to panic attacks except for times when you’re overly stressed, over-tired or on the verge of getting sick.
It takes the average person about a year to progress from being able to comfortably hold his or her breath exhaled for thirty seconds to being able to comfortably hold his or her breath exhaled for sixty seconds, the optimal time. Some people work to hold their breath exhaled for as long as a minute twenty seconds but this is not really necessary.
While holding your breath exhaled, you’ll probably notice strands of muscle tension in the sides of your chest and in your cheeks. If you can consciously relax those muscles, you’ll speed up your progress while also learning how you’ve unconsciously held muscle tension in your body all these years.
Going back to the psychological side of the equation, a person suffering from panic attacks also has to learn how not to make everyday problems into catastrophes. Catastrophic thinking forms a direct link to subclinical hyperventilation and panic attacks.
One thing most people suffering from panic attacks do is engage in what I call Negative Possibility Thinking. The reason to themselves in 1,001 different ways “It’s possible I could die of a heart attack at 5PM today”; “It’s entirely possible I could be horribly injured and then die in a car crash this afternoon”;
“If I do badly on this upcoming test, it’s possible that might mean I’ll do badly on all my future tests, fail my class, get kicked out of school, not be able to get a job, and end up cold and hungry, shaking a tin cup in an alley for change”; “It’s possible that right now, Putin could be drunk, staggering around in the Kremlin and push the button today, killing us all in a nuclear blast by dinnertime.”
The problem with Negative Possibility Thinking is that you can’t disprove any of these thoughts outright: all of these things are indeed possible. You can’t say to yourself that they’re impossible.
What you can do to deal with your version of negative possibility thinking is to confront it with what I call Probability Thinking: “While it’s possible I could die of a heart attack at 5 PM today, probably I won’t”; “While it’s entirely possible I could be horribly injured and then die in a car crash today, probably I’ll be just fine”; “while it’s possible I could do poorly on this upcoming test, get kicked out of college, fail to ever get a job and end up on the poor side of town begging for money to keep myself alive.
Probably I’ll do all right on this test (although maybe not perfectly), stay in school, end up with a reasonably good job and not end up unemployable and poor—especially if I continue to study diligently and work to correct whatever errors I make”; “while it’s possible Putin is drunk right now and about to hit the button, probably he’s not.”
Keep in mind that only trying to resolve your issues with panic attacks by working on the psychological side of it alone won’t be as effective as also working on resolving your tendency to over-breathe—and working on your breath alone generally won’t resolve your tendency to think catastrophically about events or engage in negative probability thinking. The two approaches work the best hand in hand.”
What I found in 35,000 hours of work going back to 1978 was that lots of things can start FMS, CFS, and other things; injuries, viruses, bacterial infection, and other things that the body attempts to heal for months and years and such. When it fails at healing the “chronic symptoms” develop. They are secondary symptoms, symptoms caused by failing to heal in 3 to 6 months more or less. Most of these symptoms are secondary symptoms.
I was hit by a truck running a red light. I had three fractured vertebrae, two lopsided crushed disks, many damaged disks in the spine from low back and up, damaged dorsal horns on the left side from over-extension, causing loss of about half my back muscles on the left. I have had chronic pain ever since. Before the crash, I had, in high detail, perhaps 25 chronic symptoms. As the healing proceeded sort of on the new injuries after a while many of the symptoms seemed to morph into other ones. I still have pain in various places from various injuries. I’m developing scoliosis possibly because of the copper deficiency causing connective tissue breakdown in many parts of my body that were the result of refeeding syndrome healing 200 other symptoms including essentially all or most of the symptoms of all those named collections of syndromes.
Aside from injuries and ongoing refeeding syndrome damage I can’t be diagnosed with any of those things anymore. I don’t have the symptoms that define FMS, CFS, etc anymore, and haven’t for 10+ years. The symptoms I have are related directly to the induced deficiencies of refeeding syndrome. It was great as all the fibro pain, the 18 points, and muscles all over the body returned to normal, healed, and grew back to what they were before atrophy, except the damaged nerves fed muscles. I don’t have exercise intolerance anymore for instance. I can walk 2.5 miles in 35 minutes and do it again if I have time. In the summer I walk 2.5 to 5 miles a day and typically 400 to 1000 vertical feet up and down at 7000 feet just getting around to the swimming pool or community kitchen or the clubhouse or sauna or my RV site. I have been doing that for more than a decade now. That would have been impossible if I still had FMS. I was diagnosed with it multiple times after it had been named 20 years or so after I manifested it.
I can walk down the detergent aisle in the supermarket without an asthma attack or any discomfort, no more MCS. No more IBS but I got liver damage with the copper deficiency. My doctors now call it a different syndrome, chronic pain syndrome in place of refeeding syndrome as the “refeeding syndrome” is popularly thought of as only a total starvation result. However, the same things can be 40 years of pinpoint starvation which can also be caused by CyCbl, HyCbl, folic acid, folinic acid, vegetable folates, glutathione, NAC, and various other things of a genetic cause because those cause cell formation failure the same as lacking MeCbl, AdoCbl, and L-methyl folate in some people.
In 2003–2005 I did an N=1000 private study to develop (I’m was a systems analyst, consultant, and software developer and became too disabled to keep working and couldn’t get SS at that time because FMS and CFS “aren’t real, just a bunch of fakers”. In addition to the disorders in the header and I’ve mentioned here I was diagnosed with “ a secret lying alcoholic”,” yuppie flu”,” an imaginary woman’s disease” (FMS), “faker” (MS for decades before it was recognized),” liar”, hypochondriac, “nobody has that many symptoms liar”, “conversion disorder”, “It’s All In Your Head”. Could that many docs be wrong? In reviewing 15 or so union groups each year it was obvious that docs repeating the same insulting wrong “diagnoses” and treated badly people with FMS and CFS. These names I was called are par for the course in diagnosing FMS and CFS.
Over 18 years what I was treating was a multitude of secondary symptoms. Essentially everybody who doesn’t complete healing in 3 to 6 months develops chronic disease syndrome dependent upon details. These secondary symptoms can be reduced tremendously. So everything that can be healed isn’t the cause of FMS. What causes secondary symptoms can be literally almost anything which is why the “cause” has gone from chronic mono, it took me two years to heal many of the secondary symptoms after mono. And traumatic injuries are thought to be involved in 50% of cases of FMS and so on.
So the hypothesis of refeeding syndrome can be tested. On May 21, 2003, I knew within 10 minutes of putting a sublingual MeCbl in my mouth of exceptional qualitative effects that my life was changed. People who have a lot of symptoms on that questionaire I started so many years ago reacted strongly to the MeCbl inside of 1 hour. From there generally, in about 3 days potassium and/or l-methyl folate deficiencies blossom forth which then need to be titrated until the symptoms are gone and then maintain the new dose, and go to the next set of symptoms. Once cell making is started well a person gets into the refeeding groove and then there is prediction after prediction of patterns of symptoms and as you match up the pattern you know what to use next. About 75% of people with many of the symptoms patterns respond to MeCbl in an hour if it is of sufficient characteristic. 80–85% with L-methyl folate added in, 85–90% with AdoCbl added, 90–95% with L-carnitine x (the kind that knocks your socks off, and that is subject to change as the body heals) and finally, vitamin D can increase by another 5% or so. 20% of those who forgot having any of the symptoms had them suddenly improving said” Oh the doctor said these symptoms are nonspecific and meaningless so I just forgot about them”, and then they named off many of the usual symptoms. Men did this the most.
As response if done correctly, and I have a list of the 95% reasons why what a person does, doesn’t work, happens very quickly and progresses in about 5-day cycles potentially, there is not a long time of waiting to see if it works. Then suddenly all of the person’s fears come up in the form of hypotheses like “detox” theory and other things that stop a person from doing what is needed to heal. To many people, this whole thing seems terribly unintuitive. Vitamins are not drugs. For instance, as a trace mineral vanadium in the form of vanadyl sulfate is used to get rid of a deficiency and does its a thing at 2 mg rather than the pharmaceutical dose of 200–400 mg to try to force it to work. However, it only makes a noticeable effect if it is deficient. That is true of all these nutrients. If they do anything, they are helping to make cells that then cause the next in line set of nutrient deficiency. Only the thing stopping cell formation has a near-immediate response to the just caused or worsened symptoms. So in doing this you are playing a dangerous game of “refeeding syndrome”. I have had severe damages from copper and boron deficiencies because they were not recognized for 7 or more years.
The one that can kill you if ignored or called “detox” sometimes, to be weathered instead of corrected immediately, is hypokalemia. And the rate of drawing on potassium faster than it can be reloaded to the serum from the tissues can cause hypokalemia, low potassium symptoms. It can happen as high as 4.3 or maybe higher. The things like heart irregularities that low potassium causes are not pegged to the value of a lab test but rather on the ability of your body to supply the amount of potassium when it is needed. It doesn’t wait for “my evening dose”.
The CblC disease review study that recognizes the adult-onset type says plainly that electrolyte instability is usual in either the disease or the treatment of it, and again it is a genetic cause of “starvation” and treating it is refeeding syndrome all over again. It causes all the usual symptoms, hundreds of them until it kills.
I was desperate. I would have been dead of congestive heart disease back likely in 2004 or so. My internist said after a year of seeing me visibly change every 3 weeks that “I have never seen anybody come back from so far over the line.” Something to consider on CHF. The 10 years after diagnosis mortality rate of CHF is 80%. I’m 25 years post-diagnosis and I don’t have congestive heart failure any more. I lost 85 pounds of water, 50 pounds of fat and restored 50 pounds of previously atrophied muscle in a two-year period after 2–3 years into healing. I weigh under 200 pounds instead of 285 with thigh muscles no thicker than my thumb.
People are used to suffering for decades. For the last 10+ years before I started MeCbl (before it was available) I woke up every day after 3–5 hours of sleep, lousy sleep, limited by pain, with tears running down my face before I’m awake and wishing I was dead. The reason this whole business even exists at this widespread fashion is because of a lab mistake that won a Nobel prize because the mistake wasn’t discovered for 11 years and then basically ignored in the USA and many other places. And they use folic acid and poison many of our population by putting it in white flour and many other things. Only half the people can use it up to about 800–1000 mcg and they may need 45 mgs of l-methylfolate to heal, determined via titration. Doctors telling us that we are not important, that these things are not serious and not healable. Of course, they all read the same bad research so it isn’t the doctors missing it. There is essentially fake news back in the foundation of our present nutritional logic which wreaks havoc with our health. Part of the problem is the “abnormal” have become “normal” in the past 70 years of CyCbl and folic acid caused chronic deficiencies have made many tests just plain wrong.
Here is a “short” version of the information to do it. It isn’t anything like “take 2 every 4 hours”. Instead, it’s a method to recognize deficiencies and correct that which stops making cells where you can see or feel the differences.
What I found in 35,000 hours of work going back to 1978 was that lots of things can start FMS, and CFS and other things; injuries, viruses, bacterial infection and other things that the body attempts to heal for months and years and such. When it fails at healing the “chronic symptoms” develop. They are secondary symptoms, symptoms caused by failing to heal in 3 to 6 months more or less. Most of these symptoms are secondary symptoms.
I was hit by a truck running a red light. I had three fractured vertebrae, two lopsided crushed disks, many damaged disks in the spine from low back and up, damaged dorsal horns on the left side from over-extension, causing loss of about half my back muscles on the left. I have had chronic pain ever since. Before the crash, I had, in high detail, perhaps 25 chronic symptoms. As the healing proceeded sort of on the new injuries after a while many of the symptoms seemed to morph into other ones. I still have pain in various places from various injuries. I’m developing scoliosis possibly because of the copper deficiency causing connective tissue breakdown in many parts of my body that were the result of refeeding syndrome healing 200 other symptoms including essentially all or most of the symptoms of all those named collections of syndromes.
Aside from injuries and ongoing refeeding syndrome damage I can’t be diagnosed with any of those things anymore. I don’t have the symptoms that define FMS, CFS, etc anymore. I don’t have exercise intolerance anymore for instance. I can walk 2.5 miles in 35 minutes and do it again if I have time. In the summer I walk 2.5 to 5 miles a day and typically 400 to 1000 vertical feet up and down at 7000 feet just getting around to the swimming pool or community kitchen or the clubhouse or sauna or my RV site. That would have been impossible if I still had FMS. I was diagnosed with it multiple times after it had been named 20 years or so after I manifested it.
I can walk down the detergent aisle in the supermarket without an asthma attack or any discomfort, no more MCS. No more IBS but I got liver damage with the copper deficiency. My doctors now call it a different syndrome, chronic pain syndrome in place of refeeding syndrome as the “refeeding syndrome” is popularly thought of as only a total starvation result. However, the same things can be 40 years of pinpoint starvation which can also be caused by CyCbl, HyCbl, folic acid, folinic acid, vegetable folates, glutathione, NAC, and various other things of a genetic cause because those cause cell formation failure the same as lacking MeCbl, AdoCbl, and L-methyl folate in some people.
In 2003–2005 I did an N=1000 private study to develop (I’m was a systems analyst, consultant, and software developer and became too disabled to keep working and couldn’t get SS at that time because FMS and CFS “aren’t real, just a bunch of fakers”. In addition to the disorders in the header and I’ve mentioned here I was diagnosed with “ a secret lying alcoholic”,” yuppie flu”,” an imaginary woman’s disease” (FMS), “faker” (MS for decades before it was recognized),” liar”, hypochondriac, “nobody has that many symptoms liar”, “conversion disorder”, “It’s All In Your Head”. Could that many docs be wrong? In reviewing 15 or so union groups each year it was obvious that docs repeating the same insulting wrong “diagnoses” and treated badly people with FMS and CFS. These names I was called are par for the course in diagnosing FMS and CFS.
Over 18 years what I was treating was a multitude of secondary symptoms. Essentially everybody who doesn’t complete healing in 3 to 6 months develop chronic disease syndrome dependent upon details. These secondary symptoms can be reduced tremendously. So everything that can be healed isn’t the cause of FMS. What causes secondary symptoms can be literally almost anything which is why the “cause” has gone from chronic mono, it took me two years to heal many of the secondary symptoms after mono. And traumatic injuries are thought to be involved in 50% of cases of FMS and so on.
So the hypothesis of refeeding syndrome can be tested. On May 21, 2003 I knew within 10 minutes of putting a sublingual MeCbl in my mouth of exceptional qualitative effects that my life was changed. People who have a lot of symptoms on that questionaire I started so many years ago reacted strongly to the MeCbl inside of 1 hour. From there generally in about 3 days potassium and/or l-methylfolate deficiencies blossom forth which then need to be titrated until the symptoms are gone and then maintain the new dose, and go to the next set of symptoms. Once cell making is started well apersongets into the refeeding groove and then there is prediction after prediction of patterns of symptoms and as you match up the pattern you know what to use next. About 75% of people with many of the symptoms patterns respond to MeCbl in an hour if it is of sufficient characteristic. 80–85% with L-methylfolate added in, 85–90% with AdoCbl added, 90–95% with L-carnitine x (the kind that knocks your socks off, and that is subject to change as the body heals) and finally vitamin D can increase by another 5% or so. 20% of those who forgot having any of the symptoms had them suddenly improving said” Oh the doctor said these symptoms are nonspecific and meaningless so I just forgot about them”, and then they named off many of the usual symptoms. Men did this the most.
In response, if done correctly, and I have a list of the 95% reasons why what a person does, doesn’t work, happens very quickly and progresses in about 5-day cycles potentially, there is not a long time of waiting to see if it works. Then suddenly all of the person’s fears come up in the form of hypotheses like “detox” theory and other things that stop a person from doing what is needed to heal. To many people this whole thing seems terribly unintuitive. Vitamins are not drugs. For instance, as a trace mineral vanadium in the form of vanadyl sulphate is used to get rid of a deficiency and does it’s the thing at 2 mg rather than the pharmaceutical dose of 200–400 mg to try to force it to work. However, it only makes a noticeable effect if it is deficient. That is true of all these nutrients. If they do anything, they are helping to make cells that then cause the next in line set of nutrient deficiency. Only the thing stopping cell formation has a near-immediate response to the just caused or worsened symptoms. So in doing this you are playing a dangerous game of “refeeding syndrome”. I have had severe damages from copper and boron deficiencies because they were not recognized for 7 or more years.
The one that can kill you if ignored or called “detox” sometimes, to be weathered instead of corrected immediately, is hypokalemia. And the rate of drawing on potassium faster than it can be reloaded to the serum from the tissues can cause hypokalemia, low potassium symptoms. It can happen as high as 4.3 or maybe higher. The things like heart irregularities that low potassium causes are not pegged to the value of a lab test but rather on the ability of your body to supply the amount of potassium when it is needed. It doesn’t wait for “my evening dose”.
The CblC disease review study that recognizes the adult-onset type says plainly that electrolyte instability is usual in either the disease or the treatment of it, and again it is a genetic cause of “starvation” and treating it is refeeding syndrome all over again. It causes all the usual symptoms, hundreds of them until it kills.
I was desperate. I would have been dead of congestive heart disease back likely in 2004 or so. My internist said after a year of seeing me visibly change each 3 weeks that “I have never seen anybody come back from so far over the line.” Something to consider on CHF. The 10 years after diagnosis mortality rate of CHF is 80%. I’m 25 years post-diagnosis and I don’t have congestive heart failure anymore. I lost 85 pounds of water, 50 pounds of fat and restored 50 pounds of previously atrophied muscle in a two-year period after 2–3 years into healing. I weigh under 200 pounds instead of 285 with thigh muscles no thicker than my thumb.
People are used to suffering for decades. For the last 10+ years I woke up every day after 3–5 hours of sleep, lousy sleep, limited by pain, with tears running down my face before I’m awake and wishing I was dead. The reason this whole business even exists in this widespread fashion is because of a lab mistake that won a Nobel prize because the mistake wasn’t discovered for 11 years and then basically ignored in the USA and many other places. And they use folic acid and poison many of our population by putting it in white flour and many other things. Only half the people can use it up to about 800–1000 mcg and they may need 45 mgs of l-methylfolate to heal, determined via titration. Doctors tell us that we are not important, that these things are not serious and not healable. Of course they all read the same bad research so it isn’t the doctors missing it. There is essentially fake news back in the foundation of our present nutritional logic which wreaks havoc with our health. Part of the problem is the “abnormal” have become “normal” in the past 70 years of CyCbl and folic acid-caused chronic deficiencies have made many tests just plain wrong.
Here is a “short” version of the information to do it. It isn’t anything like “take 2 every 4 hours”. Instead it’s a method to recognize deficiencies and correct that which stops making cells where you can see or feel the differences.
Fred Davis’s answer to Has someone used a MeCbl treatment for patients or has been treated with MeCbl? What for and what were the outcomes? (Fred Davis’s answer to Has someone used a MeCbl treatment for patients or has been treated with MeCbl? What for and what were the outcomes?)
After the secondary symptoms from healing or attempting to heal are all cleared up, what remains could be the FMS. My experience now is the old injuries damage, deficiency damage and identifiable cause symptoms is what I have left after healing many of the secondary symptoms. Each batch of different refeeding symptoms can look like relapse except that it usually goes away in a few days as quickly as it returned and unlike FMS or CFS there is no mystery at all about the cause. This whole thing is a result of basically an A-B longitudinal feeding trial of 60 years. 40+ years of trial A with folic acid and CyCbl.
The B branch trial started in 2003 with the direct human active folate and cobalamin s instead of folic acid which compared to methyl folate is like flaxseed oil compared to linoleum, very oxidized and spoiled. The hypothesis of refeeding syndrome is easy to test. I basically was attempting to establish what our health would be like without the Nobel prize for B12 which turned out to be a seriously bad mistake and instead, we have millions of sick people with chronic disease for decades because of these two experiments tried on the USA population. I think it is time to correct the mistake that was never able to validate with matching the results of “protein mystery factor”, like getting new mothers with postpartum depression out of the mental hospital in 3 days and the same with some other disorders. Failing to duplicate the liver extract concentrate with CyCbl was a fatal mistake. Ignoring that failure is a huge failure as the whole logical structure based on folic acid and CyCbl is a failure and makes people sick and corrupt tests.
FMS and CFS and similar things are logical constructs, a syndrome, the same as chronic pain syndrome which is virtually identical to FMS accept that pain is the main nonhealing item. “IT”, a syndrome isn’t there when you take away the symptoms. As when you get to downtown Oakland it is said “There is no ‘there’, there”.
The same is true for “refeeding syndrome”, when you eliminate the symptoms, there is nothing there. It’s a process that happens due to lacks. FMS happens becasue of lack of things, not presence of them. When trying to heal from almost anything, if not successful and secondary symptoms start forming, you are getting it. How fast is a deficiency symptom affected? In minutes to hours if it is THE item’s lack that is stopping a process such as growing a cell.
Traditionally, rheumatologists do the testing to find fibromyalgia. That is because originally, nobody knew what fibromyalgia was and they assumed, as it was linked to pain in joints and muscles, that it should fall under the department of rheumatology.
So, in a lot of countries, they are still the ones that do the testing. The way you test to see if you have fibromyalgia is in two stages: the first one is the clinical diagnosis, which includes trigger points on your body, a review of all your symptoms, and sometimes a questionnaire to see how your fatigue and pain affects your daily life.
The second one is an “exclusion diagnosis”, which means that you have to be checked for every disease that presents similar symptoms (MS, Spondylitis, rheumatoid polyarthritis…). So, they will make you take MRIs, blood tests, sleep tests, and a bunch of other stuff that takes ages, just to be sure you don’t have of one those other diseases.
Once you’re “officially diagnosed” with fibromyalgia, you can stay at your rheumatologist, although most have a certain disdain for the disease, or you can seek someone who gives a shit. It can be a neurologist or a physiotherapist. In any case, once the diagnosis is official, you need someone asap that you can trust and feel is in your corner. This is vital. If the doctor you have in front of you is “fibro-skeptic”, run.
Also: there are now tests to objectively “see” fibromyalgia in a patient but they aren’t commonly used. However, if someone says “there is no way to biologically see if you have fibromyalgia”, it’s a lie. We can now see altered responses to pain stimuli in the brain on cat scans, or high levels of nerve capillaries in the hands through a biopsy.
