Chronic Fatigue Syndrome/ME

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One Foot, Then…

…the other.

The past 8 months have involved health challenges so overwhelming I can only sum it up in this way: It’s the worst I’ve experienced in over a decade, after the best I’ve experienced in over a decade.

So, in 2014, I went from best yet to worst yet. The amazing takeaway from it all is not merely a seriously upsetting reversal but a series of seriously validating revelations. In short, I know more about the systems and sources comprising my overall health picture than I ever would have known without the reversal. A gift posed as a curse, it seems.

For now, suffice to say the work to assimilate and integrate what I’ve learned has created a stall here, total silence. I’m coming out of that silence screaming. What am I screaming?

Keep your gallbladder. (This means don’t have a “cholecystectomy!”)

If it’s acting up, functioning poorly and turning your life upside down, imagine what will happen if you don’t have one at all. In my work poring over gallbladder removal refugee forums, one commenter on a post cholecystectomy forum said it all: If it’s bad with it not working properly, imagine how horrid without it. The body has a gallbladder connected to the liver for a reason.

The combination of CFS/ME relapse and ghostbladder nightmares created a total body shutdown for me this past fall. I could barely move just to do the basics. My gut was not absorbing anything. My legs shook at the slightest provocation and my symptoms escalated to include MS/ALS/GBS hauntings. Tests ruled out all the worst fears but the leftover issues have been plenty to face.

I cannot say this enough: Keep your gallbladder. If it’s not functioning well, heal it. Don’t have it cut out. You won’t be given the full picture by doctors who refuse the nutritional and holistic approach. If I had known all the risk, I would have refused this one. Research alternative nutritional approaches and healing modes and, if your budget can withstand it, find a doctor not constrained by insurance oversight. Without the gallbladder the gut goes into total imbalance and turmoil. 15 years post surgery, I hit a brick wall after year after year of challenges, patching up my resulting problems as best as I could. It wasn’t enough.

So, this week I see a doctor of functional medicine and my work to heal will take on new dimensions.

One foot, then the other… (but hey, keep your gallbladder!)

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GAPS

Gut and Psychology Syndrome = GAPS

Over the summer my CFS/ME struggle became the perfect storm, tossing me into the abyss. But we can learn much in said abyss, thankfully. I learned not to take advantage of a wellness milestone but to wait for a year or two of wellness milestoneS. I learned the hard way. But along the way I’m refusing regret because the lessons learned have offered me jewels of insight I would not have been open to before the inevitable perfect storm. For one, the GAPS diet. Or, as I prefer to see it, the GAPS lifestyle. While I’m still at the beginning stages of this radical approach, I’m realizing some of the components will have to be a lifetime practice for my unique situation. Bone broths have become a must for my healing. And I’m seeing the benefits after 8 weeks in my skin and, of course, in healing my gut. For many CFS/ME sufferers one of the “sacrificial” systems the body begins to shut down or diminish support of is the gut/liver. And the body does so because blood pressure is suffering due to low cardiac output. But first, support of the skin/thyroid is diminished. Bone broths rescue both in a terrific dual bonus I know I’ll never be able to abandon.

GAPS focus, as well as the paleo, particularly anti-inflammatory, nutritional regimen brings everything down to the basics of good gut health and improved energy levels. There’s no wiser approach, in my opinion. So, for anyone curious enough or in dire need, check out the resources of gapsdiet.com as well as Weston A. Price.

Of the Mother…
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Of the Mother…

The intuitive path has recently insisted I pay attention to all things mother. And the first association I make, beyond the obvious maternal meaning, is goddess, earth mother. Taking it a step further, for those of us who suffer the disadvantages of CFS/ME, the mother connection comes in with our mitochondria. It’s the mtDNA or DNAmt. Were you to go all “mystical” or “metaphysical” about the mother, you would point to the mitochondria and be backed by the science since the DNA for the mitochondria runs along the maternal line. So, it goes like this: my grandmother quite literally suffered and died due to complications created by CFS/ME. Her heart gave out. She had seen all the doctors, been pronounced “fine” and sent home with quite a few drugs to alleviate her symptoms for which they knew no cause. For years, she bootstrapped her way along, often complaining of freakish levels of fatigue and afraid of what her heartbeat suggested. She had every reason to be afraid. The great thing about CFS is the fatigue, as ironic as that is. It’s what separates the heart failures/transplants from those who get to keep living and keep their hearts. If you heed the fatigue, let your body regroup and heal, pacing yourself, your heart should sustain you.

Today is my 3rd day of feeling more connected to earth mother as I heal my soon-to-be mighty mitos. I hold this brew in my mouth and swish it around, careful to avoid my teeth(!) and the colours alone fill me with joy. As I’m juicing the organic beets, beet greens, kale, carrots and apple, I feel the whole body equivalent of my mouth watering…if that makes sense. My gut is saying “Hurry up, must have. Get it down the hatch!” But I take my time with the whole process, careful to pace even my least strenuous motions, making a meditation out of the work. The colours seep into my vision, flood my soul and all I can do is grin. Much like the joy I feel when colours pile up on a canvas, dots piling up to reveal the image coming from my depths…these vivid hues sing with life. Of the mother…of earth mother’s depths sustaining…

Here’s to healing practices that bring joy…

2014, j. ruth kelly, all rights reserved

2014, j. ruth kelly, all rights reserved

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CFS = Cardiomyopathy

Not a surprise but not fun to have affirmed, repeatedly. This is my current focus in the interest of … drumroll … longevity! Life has definitely kicked the challenges up a notch here with my health.

“CFS Compensates for Idiopathic Cardiomyopathy

“Let me first of all define heart failure. There are two kinds of heart failure. There’s the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy.” [Idiopathic: cause unknown; Cardiomyopathy: structural or functional disease of heart muscle] “And your primary means of compensation—now this is the big twist—are you ready? Have you got your seat belt on? The primary methodology for compensation for this disorder is in fact CFS itself.”

Patient responds: “I see. So, this is the body’s way of saving us from dying of cardiomyopathy.”

Dr. Cheney: Yes. From dying of cardiomyopathy.”

Taken from this link. And Dr. Cheney is on my list of CFS specialists to visit. (Long gap in posts! Life has been…challenging! CFS has been cruel!)

So CFS is nature’s way of saying, to some of us with CFS, go lie down and save your heart. This is the diagnosis my grandmother should have had. Her heart gave out amidst doctors’ decrees: “There’s nothing wrong!” And to this day, rare are those cardiologists who have a clue what’s going on with the heart of a CFS sufferer. Maddening…

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Summer Smash

I rode the wave of energy granted me by some amazing supplements and thought myself free of the end-of-summer smashery but, it wasn’t to be. The problem with CFS/ME and riding the wave of energy that comes along is the inevitable payment made down the road. Instead of pacing, I gorged on activity. And the smash prevailed. But the good news? It’s none of it nearly as devastating (can’t call it devastating, in fact) as it has been in the past. When recovery is well underway, setbacks take on milder and milder hues of frustration – as long as the supplements are continuously available.

These supplements are now at the top of my absolute must list:

Virasyl (Shilajit and Humic Acid)

Bio PQQ

Vitamin K2

Ubiquinol

Acetyl L-Carnitine

R Lipoic Acid

Magnesium (topical and oral)

D-Ribose

Olive Leaf Extract

Bovine Colostrum

And a ton of amino acids. And other basics.

 

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Shilajit

Shila…huh? This is one of two earthy substances I’ve decided to consume for more support of immune system, etc. etc. Since recurring fever is well, recurring, I’m hoping this will kick it. I just discovered it is purported to also benefit…

drumroll…

the mitochondria. Oh. Gee, CFS is only mostly and majorly indicative of mitochondrial failure.

An interesting tidbit here:

“What is Shilajit?

Ancient doctors discovered shilajit preserved in the rocks of the Himalayas, and it became an essential part of their treatment for a variety of conditions.2-5 Shilajit is a rich brown organic material that forms in the rhizosphere — the thin layer of earth where living roots and microorganisms interact with the rocky core of the planet itself.2 This intimate organic/inorganic relationship generates the humic substances that make up shilajit, contributing to its more than 85 distinct components.2,6,7

Modern analysis has determined the presence and function of two major components of shilajit, fulvic acids (also called humic acids) and dibenzo-a-pyrones (DBPs). These two components go hand-in-hand to promote andenhance the energy-boosting function of CoQ10 in the body. Here’s how they work.

Fulvic Acids

Found in both living and fossilized organic material (such as peat), fulvic acids protect mitochondria against oxidative damage and reduce dangerous lipid peroxidation.8Fulvic acids carry DBPs into mitochondria9 thereby augmenting the availability of electrons in the mitochondrial energy pathway.

Fulvic acids and related humic substances found in shilajit also work as “electron shuttles,” augmenting CoQ10 to speed and facilitate essential electron flow in mitochondria.10-13 Mitochondria generate those electrons from the food we eat andcapture their energy in ATP molecules. ATP is the cellular energy “juice” that drives all living functions. The larger the flow of electrons, the greater the production of vital ATP — and the more energy there is to power vital functions and protect cells from aging.”

While it’s lovely to protect the cells from aging, I’m going for optimal daily living in spite of CFS. We’ll see what happens. Currently taking a combo of humic acid and shilajit (with Ubiquinol – superior form of CoQ10). We’ll see what it does.

Related Link Here

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Topical Magnesium for Headaches

One of the many frustrating realities of CFS is the recurrence of headaches. It’s not something I typically mention if anyone asks “what are the symptoms?” But there it is. Sometimes pounding my head for weeks. I can also go for years with the occasional headache. It’s one of those intermittent (meaning months on/off) realities. As an example: this past Saturday I went around all day feeling like someone had stuck a knife in my right temple. Throbbing horror. But I kept moving. Went to my daughter’s 18th birthday party, the second one and less focused on family. All I had to do was show up, thankfully. Teens, noise and non-stop activity. Headache’s worst scenario. By the time I got home all I could do was crawl in bed. Slowly. Carefully. I use transdermal magnesium nightly. It’s becoming quite a revolution for my CFS story, once again. (I had a magnesium flush-injection while pregnant 18 years ago and my CFS symptoms almost totally disappeared for a number of years.) I had done my usual routine with the magnesium oil but more liberally applied it to my body with high hopes for relief from all the other CFS realities I live with daily. But I was tossing and turning, the knife in my head keeping me awake. Finally, it occurred to me to put some of the magnesium directly on the “knife” in my head. Within minutes I passed out, the pain fading. I haven’t gone without this pain for 2 weeks. I might catch a break for a few hours in the morning but by noon or 2pm my head is pounding.

2 days now. Zero pain. As it turns out I’m not alone in this experience. Magnesium “oil” saves the day for quite a few headache sufferers.

Here’s my current  recommendation for the best product: http://www.ancient-minerals.com/products/magnesium-oil/

CFS/ME sufferers need to realize magnesium is essential to the production of ATP and this is pivotal to our recovery during times of reactivation. For CFS newbies this means those times CFS has flared up and taken over your life on significant levels.

As a result of that evening of dousing myself (drowning, more like) in the magnesium oil, I was able to go walking along NC’s Deep River with my sister. Two days of significant activity for a CFS veteran is risky business sometimes, especially while in recovery. I awakened today to no headache, no fatigue horror and no major pain.

Here’s to more magnesium and more living…

j. ruth kelly, all rights reserved, 2013

j. ruth kelly, all rights reserved, 2013

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Muscle Mass = More Mitochondria

This would be the holy graille for CFS sufferers with all the challenge to attain it (but not something to give up on!)…

“For many years, it was commonly believed muscle soreness was from lactic acid buildup, but this has now been thoroughly debunked by science. The burn you feelwhile exercising is indeed lactic acid, however, your body flushes it out very quickly — within an hour of exercising.

In actuality, lactic acid is a muscle fuel, not a caustic waste product. The myth that lactic acid causes muscle soreness stems from a century-old misinterpreted frog experiment.2

Your muscles produce lactic acid from glucose, which is then taken up by your mitochondria. The more fit you are, the better adapted your muscles are at using it.

The larger your muscles become, the more mitochondria you have, and the more efficient your “lactic acid furnace” will be. Mitochondrial mass (and therefore, athletic performance) is further increased by high-intensity burst type training.

Delayed onset muscle soreness (DOMS), or the muscle soreness you’ve experienced one to two days after exercise, is actually caused by inflammation stemming from microscopic tears in your muscle fibers, or more specifically, microtears between your muscles and their surrounding tissues.

This most often occurs when you start a new exercise program, change it in some way, or resume exercising after a period of inactivity. Eccentric contractions seem to cause the most soreness, meaning movements that cause your muscle to forcefully contract while lengthening, such as the downward motion of squats or pushups.

These damaged muscles release chemical irritants that trigger mild inflammation, which awakens your pain receptors. Other theories about DOMS attribute the phenomenon to changes in osmotic pressure, muscle spasms, or differences in how your muscle cells regulate calcium.

Although science has not yet pinned down the exact process, post-workout soreness is a normal response to exertion and part of an adaptive physiological process that leads to increased strength and stamina.” Dr. Mercola

Related Link Here

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Acetyl L-Carnitine

…to the rescue…

Here’s why CFS/ME sufferers need to keep this one in their daily supplement routine:

“Carnitine is the carrier molecule that takes fuel in the form of acetate groups from the cell across mitochondrial membranes where it is needed to fuel energy production by Kreb’s citric acid cycle and oxidative phosphorylation. Acetate groups in the cell bind to carninine to form acetyl L-carnitine, which can then pass through the mitchondrial membrane. The acetate groups is then given up and L-carnitine passes back through the mitochondrial membrane into the cell in order to pick up another molecule of acetate. Using the car analogy, carnitine is like the nozzle on the fuel pump that delivers fuel into the tank of your tank of your car where it is needed.

Carnitine can be made in both the liver and the kidney from cysteine and methionine (both amino acids in animal protein) and requires iron and vitamin C for its synthesis. In muscle meats L-carnitine makes up 0.1% of dry matter. There is very little carnitine in plant derived foods, which may partly explain why vegetarianism seems to be a risk factor for chronic fatigue.

A typical sort of dose to treat problems associated with poor mitochondrial function is 2 grams a day. Studies have shown it is highly effective in ischaemic heart disease. It has also been trialled in the treatment of chronic fatigue syndrome…” Dr. Sarah Myhill

Related Link Here

I take 2 grams a day WITH r-lipoic acid (this is what the body creates FROM alpha lipoic acid) in order to optimize their benefit. Ratio of 1:1. It’s an energy revolution when I’m careful not to overdo the activity. I consider these 2 supplements a daily must.

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Pacing Purgatory

Some days there’s no other description for what Dr. Myhill has tagged “pacing” … an essential component of the CFS/ME daily survival reality. Along with a ridiculously long list of supplements I can’t do without, there’s this lil thing called pacing. It can often be described as purgatory. Some docs say a CFSer should rest 3 minutes for every 1 minute of activity. O.o That leaves no time for an actual life and makes a ton of sense if you’re in the worst of the CFS badlands. Fortunately, I’m not there. But, I’ve been close to the edge of that horrible wasteland and have had to up the pacing realities. So, what does it mean? It means I’m up and working for a few hours and then on the couch with the laptop. Or without it, flat on my back staring out at the trees and sunshine. Or I’m in a chair under those trees. Last week, I went bowling with my daughter on her birthday. I was described as graceful and fluid in motion. But. What did it feel like? My knees almost buckled 3 times. My upper body was screaming, my back howling and my legs literally shaking. How do you hide this? You sit down as soon as you’ve taken your turn.  You breathe deeply, sip at the water you brought and refuse to panic.

Seriously.

The result? 3 days on the couch with occasional outbursts of here and thereness, popping Ibuprofen (it’s against my nutrition religion to do that but i do it when desperate), rubbing magnesium oil on the pain-filled limbs and riding the wave of agony.

Put this in perspective. What kind of person am I? The running/sprinting, take me to the river, up the mountain, down the beach and to the bowling alley, down the bike trail type. Oh and there are the random dance fests. I miss it all. And I have not had the chance to really fully cultivate who I am outside of this purgatory, when things weren’t as bad as they’ve been for this almost 6 year stretch. Why? Because this “syndrome” (insert expletives here) has been part of my life since my early 20s. That’s 20++ years.

So. How does someone in purgatory find the meaningfulness in it all? Well…there’s this river perpetually flowing beneath the surface of every moment, and under trees and in the breezes blowing by, in the conversations filled with heart and soul, baring vulnerability and frustration, joy and longing. We’re here for these pleasures, and for the honor of meeting the challenges love tosses our way from time to time. But some times only a raging ranting session of frustration venting proportions will do. Pacing the emotions…pacing the body…corralling the longing into deeper appreciation for everything from birdsong to treespeak to…