Welcome to Healingwell, Helen.
CFS patients are like Christmas chocolates - a very assorted bunch ! In many cases, the same sorts of symptoms seem to be triggered by different root causes, particularly where there is an autoimmune disorder involved. So whether or not I have CFS, CFIDS, PVFS, ME or whatever you want to call it is a good question. Since there's an ongoing debate raging on both sides of the Atlantic as to what exactly constitutes these "syndromes", or whether they even exist except in the mind (why believe the patients ? They're not medically trained, seems to be the thought), diagnosis is always a real problem.
But from my own experiences and those of others, and from reading up on the subject, I can tell you a fair bit about the fatigue.
- You may have days where you seem absolutely fine, and other days that you cannot do anything at all. In between these two extremes, you might get days where you wake up fine and feel tired later, or vice versa.
- It's possible to wake up even more tired than when you went to sleep. This is often due to increased immune system activity and/or damage. (We only sleep because our immune system demands it of us.)
- Acute episodes of fatigue may become more common without proper rest and diet, treatment etc, so that good days may become less frequent.
- There is a debate on how to treat the fatigue; one school of thought says work through it, one says rest. Personally I think of it like weight lifting; to gain an improvement in performance, you have to make an extra effort, but if you do too much you will just injure yourself. Some days, you just should rest. It's kind of like recharging batteries - if you don't give them enough time, you get less power out of them. (The fatigue is probably related to damage in your cellular "batteries", organelles called mitochondria.)
- If the fatigue is caused by an underlying disease process which is going unchecked, the acute episodes may be replaced by more chronic fatigue. (In medical terms, "acute" means sudden and severe, "chronic" means continual.) In my case for example, my fatigue is probably the result of an infection or an autoimmune response which has given me a gut disorder. So as that gets worse, I have gradually become less energetic over the years, until now I very rarely have a "full power" day. But as I've learned to recognise the warning signs and manage my energy better, I've also done away with most of the really bad days, and actually achieve a lot more than I used to during the acute on/off phase. The upside of chronic fatigue is that you get much better at logistics.
- Yes, it's normal to be driven berserk with frustration, not knowing how to plan anything !
- Frequent antibiotic use seems to be related to CFS type disorders, as does a poor diet lacking the appropriate Essential Fatty Acids. Food intolerances are very common; dairy products, eggs, wheat and gluten are the main ones. (When I first came off gluten my energy levels doubled in a week.) It is worth noting that many foods store up trouble for you - the effects may be subtle and long-term, rather than immediate and acute, or depend on how healthy you are on the day. Many people use probiotics (not the supermarket yoghurts, they're very low in the vital ingredients), while some opt to eat lots of Omega 9 fatty acids and/or organic foods. I know that organic food works well for me for example, but that may be because my gut needs all the help it can get; some people may find that their gut is working fine, and they derive no benefit.
- Blood sugar is often a problem, and avoiding caffeine and soft drinks is a great idea.
Hope this helps you, from your post I'd guess you have no brain fog, but if you are finding it hellishly hard to concentrate on reading and writing then you are a typical ME/CFS sufferer ! (The answer there is to break it up into sentences, and just read one sentence at a time - have a complete break between each one, and ignore anything irrelevant.)