FM & CFS Are Not Progressive

Raise your hand those of you that have read or hear a doctor say that Fibromyalgia and Chronic Fatigue Syndrome are not progressive.

These are conditions that you wake up one day and have, full blown and they don't go away.

It doesn't develop in severity.

I am not too sure about that and a few people with these conditions would agree with me.

I have noticed for a long time that things were not quite right.  I got a diagnosis of CFS in 2006 for the first time and FM in 2008(?)

When I started asking doctors to tell me what was wrong with me, I was definitely not feeling great (in 1998).  Would follow tests to try and determine what was wrong, why my legs were getting weaker, why I was always so tired, why there was pain.  I went to see all kinds of specialists to check my nervous system, my bones my brain.  Always nothing.

But I kept getting worst.  Yes worst, so much for non-progressing.  There are times when I would feel much better.  I could get "vacations" for a few months at a time.  But always, eventually the exhaustion came back, and every time it came back it was worst.

Over the years, many people have considered me lazy.  I am not a good housekeeper, never have been so my house has never been very presentable.  As the kids grew and became messier, the house has progressively gotten worst.  As I have gotten worst the house has gotten worst, so obviously I am lazy.

I can assure you that when this journey began, however years ago, I did not feel anywhere near as horrid as I do today.  I might always have been lazy but maybe not as lazy as I am now.

I have pretty much figured out that gaining weight has been a huge factor in making things worst.  Since I have gained a lot of weight and continue gaining no matter what I do, I am worst.  If I manage to lose weight maybe it will hurt less and I will be less tired. It's just that I don't know how to lose weight.  Everything I have tried is failing.

The problem is I can't get enough exercise to balance out my calorie intake.   CFS patients can't tolerate traditional exercise routines. Exercise programs aimed at increasing aerobic capacity are not recommended.
The majority of people with CFS are affected by post-exertional malaise, which is defined as intensifying of symptoms following physical or mental exertion, with symptoms typically worsening 12-48 hours after activity and lasting for days or even weeks.  This leads to serious deconditioning and can actually worsen other symptoms. It is also important not to engage in an endless "push-crash" cycle in which patients do too much when they feel better, crash, rest, start to feel a little better, do too much again, and so on.

The problem is that basic activities of daily living tend to push me in a "push-crash" cycle.  Any exercise I do manage to squeeze in is not enough to burn the necessary calories to lose weight.

Eat less.  It seems like if I stopped eating I would still gain weight, so I don't know anymore...  According to this calculator online, I need to eat less than 2200 calories a day.  A sample of a diet at 2200 calories can be found here.  Seems like a lot of food to me.
Anyways, enough about the whining.