"Exercise" or should we say "movement"
I wish I could remember where I read some in depth stuff on CFS & Exercise.
From my point of view (FM & severe disc disease & back surgery in 2008), may I suggest we all stop thinking about "exercise" in the usual way.
I believe we should all refrain from using the word "exercise" as we traditionally think of the meaning of the word - ie formal, repetitive movements.
Forget the word aerobic exercise (for the time being). You can always increase your aerobic fitness (& heart health) when you've improved your symptoms.
From my experience, when in pain or extremely fatigued, the idea of exercise brings tears to my eyes. Every time I do something repetitive, I exacerbate my pain & chronic inflammation.
I am best on Saturday morning when I do gentle, fairly regular "movement". I get up later, take my time, have breakfast, move back & forth between the kitchen, bathroom & bedroom tidying up, slow cleaning, careful bending, stretching to put things away or clean the bath (which I can't always do every weekend - it hurts to bend over). I walk out the door to put some rubbish out, have a soak in a hot bath. Walk slowly to the bus stop at the end of my street - about a couple of hundred metres. Catch the bus to the bottom of the main road (so I'm sitting for about 10 minutes). Walk slowly along another road to the Fresh Food Market (about 6 minutes). Stop at various stalls to shop & chat. Walk slowly back to the bus stop, wheeling my shopping trolley, I can't carry heavy bags at all............and so on. I don't hurry. If I see the bus coming I don't run - I calmly wait for the next one, if I miss it.
Slow down, pace yourself.
At work, I try not to sit down more than about 30 minutes - I have an ergonomic chair (with arm rests). I rest my elbows on the armrest as I finish each sentence on my computer. I have the computer section of my work desk slightly lower than my chair, so I don't have to try to hold my hands & wrists higher. As I am typing this post, my left elbow is actually sitting on my chair arm rest most of the time.
What I am trying to say is that I'm best when I MOVE, slowly perhaps, gently - certainly. Walking home from work when my pain & fatigue is at it's worst, I try to "glide" home on a cloud. Sometimes my shoulder pain is excruciating when I swing my arms as I walk. I put my left arm into the opening of my zip up windbreaker jacket (like a sling) when my left shoulder is really is bad.
I try to mentally make my limbs weightless. I pretend I am like jelly. It's sort of a mental exercise (in walking meditation - of which I have several books on the subject).
I did this last night when I left work late. I had been typing for about 1 1/2 hours past my normal finish time. My neck, shoulders & upper back were screaming out in pain. Within about 5 minutes of starting my walk home, I started to "float" & when I got home, the worst of the pain had gone.
Might take a bit of practice for these mental exercises, but I can assure you that they do work. Eventually there will come a day when this floating sensation will kick in automatically (without conscious thought) & you can walk further & one day, hopefully, you can get back to serious "exercise".
For those who aren't bedridden (but not able to get out much), try doing as much "movement" as you can - in slow motion. Forget repetitive exercise if you're in pain.
But do not sit still. When in pain, if you sit still, you will be more aware of the pain & your muscles will tense. When you move, your brain is sending messages to your limbs (perhaps subconsciously), but your thought pattern is divided - some of it is thinking about movement & some is thinking about pain. You're dividing your thoughts in 2 distinct directions. Your brain can't spend as much energy on processing the pain, it has to channel some of it's function in elsewhere.
After my ankle surgery in 1998, I had a wonderful physiotherapist who taught me to do small muscle clenching exercises. Some of them were so minute, that you couldn't see them. One was: I had to put my hands on my knees (sitting down of course) to detect the faint movement as I clenched certain muscles in my knees. My knee has become so weak from not using it properly to try & evade the ankle pain. (Apprently, this knee weakness is quite common after ankle injuries). The muscles on either side of your knee cap weaken from lack of use & the knee cap keeps
"falling off" & slipping to the side. After about 4 days, I felt much stronger muscle tone & could stand for longer. I was truly amazed as my legs got stronger & my ankle healed. I will never forget the magic of this & how I progressed.
And for those of you who are bedridden & your wrists/arms/legs weak, try working your way through your body - gently clenching different muscles. Clench gently & relax, starting with about 5 repetitions for each part that you can manage.
Don't know whether I'm explaining this very well.
And when walking, just try moving as though you're a willow in a gentle breeze. When you're feeling stronger, try a slow gentle walk, 5,10, 15minutes & so on. Try walking to the end of your street (assuming you live in a suburban area) 3 times a day. Don't go for a long walk. By the time you've walked a distance & suddenly realise that you're exhausted, you haven't got the energy to walk back home again. (I know this one from experience).
I have the perfect walk to work (15 minutes). This walk is absolutely perfect for me. I get plenty of fresh air & start to breath better in 15 minutes.
Don't try to use weights, a gym or formal repetitive exercises until you have regained a certain level of muscle tone. Try Tai Chi or gentle joga perhaps.
Just don't try to "exercise" too hard.
As they say to the elderly "move it or lose it".
(this can be applied to the brain as well - "use it or lose it". If your brain fog or brain activity is irregular, try some simple puzzles or crosswords to stimulate unused areas of your brain & try some simple meditation techniques to quieten down your brain).
Will post my personal technique of quietening down my brain & blood pressure when I work out how to word it. It's easier to give instructions face to face than try to put it in words on the internet.