Exercise helps for CFS? Check the definition

There is a very good article in New York Times, explaining the findings of a study published last month in The Lancet, which reported that exercise and cognitive-behavioral therapy could help people with the illness.  That study is already quite well known, and used as a basis to push many CFS and fibromyalgia patients to exercise.  My doctor had also suggested me to exercise, and to "be positive".  Being treated as "depressed" when you need serious medical attention doesn't help - it drives you to the depth of depression even if you were not. 


I thought it is important to highlight the limitations of that Lancet study to other fibromyalgia patients. Here is an extract from the NYT article which may help you to explain to your doctor why pushing you to exercise might not be the right thing to do:

The British scientists who conducted the research identified study participants based largely on a single symptom: disabling and unexplained fatigue lasting at least six months. But many researchers, especially in the United States, say that definition takes in many patients whose real illness is not the syndrome but depression — which can often be eased with psychotherapy and exercise.

I tried to push myself to exercise when I was not ready for it, and on every occasion, that resulted in a bad "relapse" - miserable days in bed, symptoms all flare up.  


Today, I am relatively well . Sometime ago, I had given up listening to doctors who did not listen to me, and listened to my own body, and started my own "programme".  That was the start to better days. 

Wow, I am walking so much!

In my valiant attempt to loose weight and increase energy level, i decided to walk more. In fact, I walked a lot. Last week, I walked at least 25 km, and I am just counting those "long distance" walks I did, not those "usual activities" walk. On two days, I walked for 2 hours per day in the evening, covering 10 km each time.

My body is still holding up, but I suspect I was overdoing it a bit. I am so tired by the weekend. I had a nice long massage yesterday, to to get rid of some knots and tackle some of the trigger points which I noticed developing. Although I slept through the whole of today, I am still feeling really tired. This week, I will really have to reduce my walks and rest a lot. I am beginning to see some of the symptoms of my fibro. Aches and fatigue.

This whole episode reminded me of a recommendations for CFS/ME patients to do GETs and CBT and the protests from patients. Stop psychologising everything!!!

New fibro support forum (UK)

There is a new fibromyalgia support forum for UK.

http://www.fibro.org.uk/

Hope this forum flies. Good luck. UK patients will need all the info/help in getting help from the NHS system, and understanding their rights.

Research- Fatigue(felt) related to heart functioning!

A new research published in the very respectable annals of internal Medicine showed that fatigue is related to cardiac functioning yesterday.

Basically, it showed that the amount of blood pumped out by the heart is lower among individuals with high reported fatigue, both at rest and in response to stress compared to low or moderate fatigue people.

The authors concluded:

"This study demonstrates that fatigue complaints may have hemodynamic correlates even in ostensibly healthy individuals".

Those were just nice and intellectual sounding stuff which means:

"There is some sort of link between the heart and blood dynamics in people who said they are fatigued! It is not all in the mind!"

I cant blame any ME, CFS or RA patients who have deal with fatigue almost on a daily basis feeling vindicated. I did!

Exercise made 1/3 of Chronic Fatigue Syndrome patients feel worse..

Saw the report about exercises prescribed for CFS patients made 1/3 of them felt worse, and resulted in some of them to be bed bound for the next couple of days.

I certainly feel a lot worse after a "good work out". The kind of fatigue and soreness, the flares in my joints I experience is not just plain after excercise sort of tiredness. I make no mistake about that. The jury is still really out there about how much is too much and how much is enough. Until then, we just got to listen to out body and get up and do as much as we possibly could. Exercises and activities, is definitely a good thing, but the amount required is really depending on the individual. That stays, until some solid research have came out we good data.

At the same time, some researchers had worked out that people who complained of high "fatigue" has hemodynamic differences compared to those arent (when they looked into the blood flow and pressure)

Fibromyalgia's "brain fogs"; the most cripling, disabling part........

How do I cope with fibro-fogs?

Fibro-fog is the second most crippling aspect in my illness. The champion crippler is of course...fatigue!!

Fibro fog is the most "invisible" aspect in the "illness" I have. No one can see and notice it, let alone understand it. It is the thing that force me to retreat into a very lonely world.

Before fibromyalgia, I had been known as careless or forgetful in my daily life, due to my happy go lucky nature. I did not pay attention to small things, and can't be bothered to double-check things. However, my attitude towards work had always been different - the playful side of me gets really serious. Anyway, as a whole, my attitude to life is the cup was always half-full, and a pitcher was coming to top it up.

I guess my carelessness history adds to my pain now. My husband still can't comprehend what is a fog vs plain carelessness. Maybe, he just tries to avoid facing the facts. This strains our relationship, and pushed me over the brink to depression sometimes.

Other than straining my relationship, it is also taking away my identity: who I am. Just a couple of months ago, a friend told me he is keen to meet my husband- the man who married the smartest girl in class. I laughed! And I almost cried!

I have been academically inclined all my life. Ask any of my friends to describe me, and you can't escape from something related to "smart" or "intelligent".

But look at me now!!!

I can't even copy out my bank account number correctly onto the back of a "quick cheque deposit" envelope within 2 attempts.

I often lose my way when I am in an unfamiliar area, even if I had been there before. This was not something that could have happened. I had a very good sense of direction since I was a kid. I would not even lose my way in a big foreign city, and yet yesterday, I was lost on the way to work. I almost broke down on the streets!

How distressing is this? You imagine. You just imagine.

Fibro-fog is my the biggest enemy. I am not too sure if I will ever lose this fibro-fog thing, but I know I have to cope with it. I have to devise ways to cope with this invisible enemy. I hope to make this fog thingy just another "inconvenience" of life, akin to hailstorms and foggy misty mornings.

This would only be possible if I could recognise the warning signs of a heavy fog day coming on (yeah, developing my own "weather forecasts" system), and having effective ways to deal with it.

Fog sucks. But after all it is just a fog!!!

Related posts:

Fibromyalgia's Fibrofogs: How does one cope with it?