MS: Many Stories – From the MStranslate Community

Welcome to part 2 of a series of articles being written by MStranslate community member, Andrew.  You may recognise Andrew from a video we featured in late 2016, introducing the potential benefits of pilates for people living with multiple sclerosis.  If you missed this feature, it can be revisited here.  Further, if you haven’t yet read part 1 of this series, we’d encourage you to read it here, before proceeding with the insights below.

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Fatigue

Fatigue is such a misunderstood idea. It’s not tiredness although that can be part of it. Nor is it really weakness although things can slip from your grip. You can reason but you can’t remember what you were trying to say. You can read a line of words but not recall what they said when you reach the last one. You can stare into a room of people and feel their chatter just wearing you down. Your arm does not always belong to you, it becomes a dead weight that somehow you can extend.

The weight of your own body drags on you like you are wearing an invisible suit of armour and you drag this weight everywhere with you. Fatigue disconnects you from the world that mockingly dances on around you but leaves you a step behind. Sleep does not cure it. You wake unrefreshed and aware of how hard everything is to do. You look like everyone else but they are so different to you. To worsen matters, the metabolic mess that causes fatigue will also contribute to muscle tightness.

When you are fatigued you won’t be able to exercise. The basic patterns of Pilates will be challenging because they require you to pull on energy that isn’t there. To make Pilates work you need to manage fatigue. To manage it, you need to define fatigue so you understand what you are trying to prevent.

I know all about fatigue and lived with it. Now I don’t have it at all. This is how I approach it.

Every cell in your body needs fuel (Food) and oxygen. These basic ingredients follow three pathways; the glycotic pathway, the Krebs cycle and the electron transport chain of oxidative phosphorylation. The first pathway metabolises glucose for short bursts of energy but it won’t sustain a cell in the long term. Its purpose is to feed the Krebs cycle in the mitochondria a steady supply of a compound called pyruvate that can be readily converted into another compound called Adenosine Triphosphate. ATP is recognised as the basic unit of energy our cells expend. Even then we don’t make much of it. It’s estimated that the human heart contains only 700 milligrams of ATP which is enough for 10 heartbeats. It’s obviously recycled and renewed incredibly quickly. How that happens depends on the electron transport chain.

All your cells need a constant supply of energy: to keep your heart beating perfectly for decades, to move your skeletal muscles, to regulate the processes that help smooth muscles manage your blood pressure, to help you think and to build and repair your body. If ATP is unable to form on demand then every function in your body will feel it.

It’s critical that energy demand does not outpace energy supply. If it does then you have a metabolic disaster. When more ATP is demanded than is available, you will be running on a flat battery and fatigue can be the only outcome. There are several things to do to avoid this.

The trick is to recycle the ATP that has been spent rapidly back into a new supply. If ATP can’t be recycled quickly enough it starts breaking down into its simpler components called a purine pool. To rebuild ATP from that pool is the slowest way to make it. Some of the purines even leak from the cell and are lost forever. The best way to replace spent ATP (called adenosine diphosphate –ADP) is to replace the one phosphate molecule that has been spent. That happens in the electron transport chain in the innermost part of the mitochondria. Electrons are donated by fatty acids and pass down the chain in a process called oxidative phosphorylation. Ultimately, ADP has a phosphate molecule added to it to restore ATP. So the lesson is no fatty acids or no oxygen equals no rebuilding of ATP. Similarly if the electrons don’t pass down the chain no ATP can be rebuilt. Most molecules can’t both receive and donate an electron. Coenzyme Q10 can and it lines the electron transport chain.

Skipping all the steps because I have been technical enough already-

Fatty acids enter the mitochondria by using acetyl-l-carnitine

Coenzyme Q10 needs to be abundant because it transports electrons

Oxygen needs to be available for the oxidative part of oxidative  phosphorylation.

If you have any source of inflammation running riot in you, an infection, an allergy, a deficiency that changes your metabolism then white cells rush to that site of damage and release an oxidative burst of free radicals (molecules with an unpaired electron) to destroy microorganisms and limit tissue damage. In little bursts it’s healthy but if inflammation is chronic then an invasion of free radicals destroys healthy tissue. It affects the lining of our arteries promoting anything from heart disease to diabetes or chronic autoimmune diseases. Systemic inflammation just ages you before your time. So the first (or the fourth if you like) part is do what you need to limit inflammation or you are straining the process to make ATP.

What I take to manage this process of boosting ATP is a megadose each day of CoQ10 (750 mg of Bioceuticals brand), 2000 mg twice a day of acetyl-l-carnitine (any brand) in addition to any supplement or medication that generally helps me. In addition I eat a sizeable breakfast; apple juice, a banana, two eggs and a whole avocado. The avocado is important as a source of fatty acids. I never touch gluten and rarely go near added sugar. They are both inflammatory, Read “Grain Brain” by David Perlmutter for an explanation.

The net of it is if you control inflammation and feed fatty acids and CoQ10 into the mitochondria  you start making more energy than you demand and fatigue ceases to be an issue.

Two good books on this are “Metabolic cardiology: The Sinatra Solution” by Stephen Sinatra and “ATP and the Heart” by Prof. Joanne Ingwall. He is a former Chief Cardiologist from Connecticut  and she was Head of the Laboratory, Cardiovascular division, Brigham and Womens hospital in Boston. A cell is a cell. You will learn more about how they work from them than any neurologist I can think of. She is his inspiration but her book is more technical.

A final problem can be Statins. They definitely lower cholesterol by blocking an enzyme called HMG-CoA Reductase. Unfortunately the pathway involving that enzyme (Mevalonate pathway) also leads to CoQ10 production. As a result Statins limit your ability to supply your own Electron transport chain and ultimately make ATP. I bet your doctor never told you that.

The next step to understand is how muscles tighten and release. Then you are ready to introduce Pilates.