Persistent
physical and mental fatigue (exhaustion) that does not go away with sleep
or rest and that terribly limits physical & intellectual activities is the
most debilitating symptom of CFS/ME. Physical activity and exercising make
symptoms worse, which is called post-exertional malaise. Patients can be at
different levels of fatigue from mild to moderate and severe wherein people
with severe CFS are unable to do any activities themselves and are
sometimes confined to their bed/unable to leave their house. Ruling out other
health conditions that can cause similar symptoms is the first step in
diagnosing CFS. While till today the underlying pathophysiology of CFS is not
established, there are certain studies and theories that discuss stress related
hormonal abnormalities, emotional conditions, virus infections, overactive
immune system, genetic mutations and in the past few years, impairment of
intra-cellular energy mechanism (mitochondrial energy production). I am not a
believer of the virus infection theory, the rest of them looks like symptoms of
one major physiological change, which is yet to be established though. My
favorite is abnormalities at the mitochondrial level energy mechanism. As I
posted earlier, there have been small studies which suggested different
underlying problem at the intracellular energy mechanism say, at oxidative
phosphrylation or at transport capacity of oxygen.
Fighting the fatigue in
CFS/ME can be extremely challenging. The
Energy Envelope Theory, which posits that maintaining expended
energy levels consistent with available energy levels may reduce the frequency
and severity of symptoms in ME/CFS. The above study found that the Daily Energy
Quotient was related to a number of indices of functioning including
depression, anxiety, fatigue, pain, quality of life, and disability. The
findings suggest that individuals with ME/CFS experience a range of negative
symptoms and disability when they extend beyond their energy envelope. This
would mean pacing is very important to keep symptoms under control and to
promote recovery. Interestingly, the above theory of low energy supply on demand
(due mitochondrial dysfunction) explains the multi systemic nature of the
health condition, all the body functions require energy supply, which is like
the electricity that runs a machine. Some the theories hence suggests that as
the energy is not produced as needed by way of normal biological mechanism, on
demand (crossing energy envelope) cells produce energy from glucose leaving
lactic acid as bye product, leading to pain & delayed fatigue experienced
by CFS patients.
My personal approach and experience
with energy envelope theory confirms the above. Sadly, I don’t have a choice
but do a full time job, drive to work, really prohibits me from improving
significantly. However, I have been managing energy usage very efficiently,
say, for example, try to lie down (no watching TV because eyes draw so much
energy, though I hear TV) most of the time, do every activity very slow so that
energy consumption is low (eg: walk really slow), stop activity at the first
body signal before pain starts. Understanding body signals is very important
part of managing the energy envelope, interestingly, fatigue is not a disease,
rather, it is body’s way of telling you, that you need to rest so that body can
re-establish homeostasis. CFS/ME patients can look perfectly fit and healthy,
which in itself is a blessing and curse, you can hide from others and everyone
sends the energy that you are well, but you may not get help. I find it very
embarrassing to tell anyone that I am fighting a complex health condition, so I
avoid people and circumstances that can push me to do more than I could do. If
I am in public, I sit down without bothered by anyone and if asked will tell
others it is my choice..be it at the Airport, in the queues in Shopping Malls,
etc. Another most important thing to reduce mental exhaustion which in turn
worsens fatigue is to avoid circumstances and every person (be it your spouse,
kids, parents, friends) who might have negativities, trigger irritability.
The paper Nutritional
strategies for treating chronic fatigue syndrome discusses
certain nutritional approaches in managing CFS/ME. The Book on CFS written by a
UK based Dr. Sarah Myhill also charts out a specific supplement regime, diet &
exercise strategy for CFS patients, I would post this separately. However,
selecting and using supplements is very difficult, as there is limited
evidence, dosage regime is not known, quality standards are uncertain, and most
of all, we don’t know if our body actually is absorbing these costly
supplements, how many of them can actually cross blood-brain-barrier when taken
orally, most challenging, what if these are just flushed out by the body.
I would be glad to share
my supplement regime, which is a very minimal regime:-
L Glutathione (reduced 250mg), Acetyl L Carntine (500mg), Alpha-Lipoic Acid (150mg), Ubiquinol (50mg), Omega 3-6-9 (400mg each of fish, borage & flax oil), Niacinamide (250mg), Magnesium Glycinate (200mg), Multi-mineral & multi-vitamins (RDA extended release), Organic Calcium
& Vitamin D, Vitamin
C chewable (500mg x 4 times). It is important to take all
these in empty stomach before meals to ensure better absorption, and would be
good to spread throughout the day. For managing pain I use NSAID (SOS, rare
use) Nimesulide (100mg), which is faster acting pain medication, is
anti-inflammatory and is highly GI tolerant.
Water plays
a key role in checking fatigue. In fact, in CFS/ME urine frequency is a major
challenge which means even if one drinks the required quantity of water in a
day, one can still remain dehydrated. The strategy to drink a total of 1.5
times the daily
need of water spread throughout the day, preferably every 40 minutes. There
are several mobile apps that help one put a schedule and remind for taking
water. It is very important to drink water before you feel thirsty, because by
the time you feel thirsty, you are already dehydrated. Never allow that to
happen, drink pure clean water.
Diet has been very
challenging for me, because being a vegetarian and having intolerance to dairy
& beans/legumes, I was virtually getting no protein, in addition, highly
wheat dependent diet, a potential allergen. Generally, a high protein diet
including red meat, eggs and avoidance of allergens like wheat, soya, processed
foods, junk foods, alcohol, coffee, are advised for CFS patients. I finally,
included lamb, black gram, green gram, millets, cottage cheese in my diet,
ensuring to take proteins in the morning and some carbs (brown rice, oats) in
the evening. Fresh fruits, raw vegetables, nuts & dry fruits were another
addition.
Exercising is very
challenging for CFS patients, however, it is important as well. Choosing the
right exercise that will not break your energy envelope is very crucial. Many
would be able to do only simple stretches, not even walking inside the home.
Further, degenerative changes of the spine and long time lying down can create
back problems, which needed to be taken care of. The below are the links to the
Youtube videos on the exercises I do, the healthy back program in the morning
and the other one in the late afternoon. However, caution needed to be
exercised and doing very slow is important. For example, the healthy back
program, I did each session for a month before moving on to my next session,
also avoided exercise on days when I am not feeling well. Consult your
physician before making exercise choices.
