Thanks to Katherine Scanlon for beginning this discussion on Sunday--she linked some research on MS and exercise and suggested that it made sense with what we know about how CCSVI can affect the levels of oxygen available to the body.  

"Research has reported alterations in muscle fibers in patients with MS, with a higher reliance on anaerobic rather than aerobic energy supply compared to healthy controls."

A Health Professionals Guide to Understanding Exercise and MS, MS Society of Canada (2009) (citing Kent-Braun, J. A., Ng, A. V., Castro, M. et al. (1997). Strength, skeletal muscle composition, and enzyme activity in multiple sclerosis. Journal of Applied Physiology, 83, 1998-2004. )

Here are some basic definitions:  

"Aerobic exercise" means any exercise that uses oxygen (O2).  We think of this as exercise that gets the heart pumping and makes us breathe more deeply.  

"Anaerobic exercise" literally means "no air" or exercise that goes beyond using oxygen for fuel.  This is the level that extreme exercise takes us to....after the oxygen has been "used up."   It appears that in pwMS,  there is a shift to this level and more reliance on anaerobic energy than in healthy people, and this creates a problem. 

This caught my attention...because Jeff is involved in many cardiovascular exercise routines--biking, hiking, elliptical machine, etc---and he does this, in spite of leg pain after exercising.  He's come to deal with the leg pain using warm jacuzzi soaks, because he just feels better exercising,  but I've always wondered why he had this excessive pain.  Since angioplasty, it's been much better than before, but it's still there.   I've heard this from many, many pwMS....they exercise because they know it's good for them, but they hurt and are fatigued excessively afterwards.   

Here's some more research from Katherine--

 Abstract Objective: Although fatigue is a common debilitating complaint in multiple sclerosis (MS), its relationship to the cardiopulmonary exercise response has yet to be defined. Design: A patient with MS manifested primarily by profound fatigue undergoes complete pulmonary function testing and a maximal incremental cycle ergometry study with gas exchange measurements and determination of ejection fractions. Setting: Outpatient, community hospital pulmonary function laboratory. Results: The patient is found to have respiratory muscle weakness and a severely depressed exercise performance. The latter was associated with an early anaerobic threshold but a normal central cardiovascular response (radionuclide ventriculography), implying problems in peripheral O2 distribution/utilization. The respiratory muscle involvement, although substantial, was nonlimiting to the exercise performance. Conclusions: Despite its central neuropathophysiology, MS as it relates to fatigue may be associated with an abnormal peripheral exercise response, namely, problems in peripheral O2 utilization. Such a concept could prove invaluable as it would provide a physiological basis for defining the severity and therapy of “MS fatigue.”

Carlos A. Vaz Fragoso, Diane Wirz, and Jan Mashman, Establishing a Physiological Basis to Multiple Sclerosis--Related Fatigue: A Case Report, 

http://download.journals.elsevierhealth.com/pdfs/journals/0003-9993/PIIS000399939580515X.pdf

This lead to reading about the "anearobic threshold"

Physiological Basis of Fatigue

 William J. Evans, Ph.D., Charles P. Lambert, Ph.D.

Nutrition, Metabolism, and Exercise Laboratory, University of Arkansas for Medical Sciences

Central Arkansas Veterans Healthcare System, Little Rock,  AR

"During exercise of any intensity, skeletal muscle produces and consumes lactic acid as a fuel for energy production.  During low intensity exercise, the use of lactic acid as a fuel prevents its accumulation.  However, as exercise intensity (and oxygen consumption) increases, the production of lactic acid increases and at some intensity production is greater than oxidation and intracellular lactic acid accumulation occurs.  The exercise intensity at which lactic acid accumulation occurs has been referred to at the anaerobic threshold or the lactate threshold.  This increasing blood (and muscle) lactic acid level results muscle fatigue as well as an increased respiration and heart rate (136, 137), and an overall feeling of fatigue.  The exercise intensity that generally corresponds to the anaerobic threshold in sedentary individuals is approximately 60% of VO2max.  This means that for a cancer patient with an already low VO2max, performing most activities of daily living requires an intensity that is greater than the anaerobic threshold.  It is, therefore, easy to see why most physical activity will lead to an overwhelming feeling of fatigue." 

--So, if a pwMS already has a low level of oxygen due to CCSVI, the threshold level where their body shifts into anaerobic mode is much lower than the average person.  And they will have a build-up of lactic acid and hydrogen ions, which creates this pain and fatigue.  

"Lactic acid has a dark side. When your body makes lactic acid, it splits into lactate ion (lactate) and hydrogen ion. Hydrogen ion is the acid in lactic acid. It interferes with electrical signals in your muscles and nerves, slows energy reactions, and impairs muscle contractions. The burn you feel in intense exercise is caused by hydrogen ion buildup. So, when you fatigue, don't blame it on lactic acid. Rather, place the blame where it belongs- on hydrogen ion."

http://www.delano.k12.mn.us/sitepages/pid1817.php

What to do???  

It's a Catch 22.  You want to exercise, because you know it's good for your heart and body, but the fatigue and pain keep you from moving.  

Here are some suggestions to deal with this--keep exercising, per your doctor's instructions, and maybe think about incorporating the following:

1. A healthy liver.  Try a milk thistle supplement, to make sure your liver can process the excess lactate formed by anaerobic exercise.

2. Massage--helps ease those tired muscles, and distributes the lactate.

3. Jacuzzi soaks, warm tubs---if you have heat intolerance, not too hot.

4. Gentle stretching before and after exercise eases burning muscles

5. Eat lots of healthy carbohydrates (fruits and veggies) to provide the body with adequate fuel.

6. Make sure to hydrate, to flush out toxins.

Explaining all of this to Jeff helped him...in understanding that the pain he felt after exercising wasn't a bad sign, but rather part of his MS, it gave him the incentive to keep moving, and to deal with the pain.  Hope it helps you, too.

Thanks to Katherine for bringing up this very important topic---

Joan