Something I can't imagine isn't relevant to the ME puzzle, unless it's a rare issue and I'm one of the few experiencing it. For the last 6 months or so, I've been able to do light exercises. 20 min walks, low (15 lbs) weight lifting and a few other light exercises. One thing that's noticeable is how none of it has gotten any easier. I have maxed out on all counts about all exercises I am doing, even though they are far below the level that really challenges muscles. Definitely no DOMS here, I haven't once felt the soreness associated with muscle training (which I've done a lot in the past, I know very well what it feels like, and it feels awesome), even though I feel the burn and will often have shaky arms afterward (as in they shake a bit when holding something), even if I didn't really use them. But the most puzzling is the balance exercises. I have been doing them almost every day for a bit longer than that, almost a year. Up to 4-5 times a day for a bit earlier this year, but I eventually had to reduce my overall exercise level because I was getting palpitations, dizziness and PEM. But I've still done it at least once per day about 90% of days for at least 6 months. It's a simple one-legged balance exercise where I raise one leg and move it around back and forth, left and right, slowly. It takes about a minute. It's not very challenging, but I still feel the burn when I'm done. But somehow, it's not gotten any easier. At all. I'm still wobbly doing them, my legs feel weak. Normally there should be a training effect, doing anything with this much regularity eventually becomes almost trivial. It should at least be a bit easier. Not at all. Not one bit. I've been improving overall a tiny bit. I can do my 20 min walks relatively OK, whereas it was a struggle from start to finish when I began. My leg muscles have definitely gotten stronger. I'm very lean and they're very noticeably stronger and more defined. But still just walking around they usually feel weak and wobbly. This can't be simply about muscles. It seems like I'm lacking the basic training effect where doing anything gets easier with practice. And it applies to most things, as if the neural connections that normally allows to do such things automatically isn't happening. And it's quite similar with any other skills I can think of. This isn't just about physical exercises, it's as if my brain only works through the mode where it has to consciously be in control of every single movement, and never benefits from a training effect, muscle memory, whatever. It also feels similar to when I was more severe, and struggled to do simple movements, especially avoiding obstacles while doing something, just less severe. I doubt I'm the only one. What is your experience with things like this? I find that things get a tiny bit easier at first, but very quickly hit a wall where no further practice will make a difference. Is that something you experience? This could certainly be relevant as to why all rehabilitation trials show no such improvement, even on very light movements. Nothing ever gets easier. Things like 5 min walking tests seeing no improvements and so on.
I've thought this same thing so many times about mental exercises. Things like programming, singing, or chess. It is strange how little/slowly I improve with many sessions of practice. Edit: Oh another prominent one in my memory was morse code. I thought it'd be cool to learn. I was doing a training session every day for at least a month, maybe two or three. It'd be about trying to transcribe about a minute of randomized letters in morse code, starting at two unique letters and adding letters in the next lesson whenever I got high enough accuracy. I initially was quickly increasing but then plateaued at around seven or eight letters and never got higher. The main factor in the exercise was being laser focused on the fast beeps. It felt like the issue was my brain fog did not permit focus past this certain level, and training couldn't budge that level in my brain. Edit 2: In fact, I have the training laid out in chart form: Each number at the top is how many unique letters. I believe each attempt is one minute of morse. You can see that when my accuracy got over 90%, I would add a letter. At 10 letters, the improvement was so gradual it was too frustrating to continue. I've pondered the idea of using this exact training as an objective brain fog test. Shout out to the morse training website, though. Very well built. https://LCWO.net Edit 3: Oh wow, the morse training was across 22 months, not 2 or 3. I was stuck at ten letters for over 3 months. Practice did become a bit less frequent near the end, so larger gaps between sessions may have contributed. Edit 4: I charted the lesson number vs. date to see how much frequency of practice may have contributed: So definitely was spreading out the sessions more at 9 and 10. (The reason I was quickly increasing then restarted from 1 early on was that I decided to restart with faster beeps to make it harder.)
yes same, little to no 'training effect', each time of doing something is like the first time, be that physical or some other skill. This can be seen easily with my smart phone. I got my first one a year ago. I still have to consciously think about everything i do, often forgetting how to access my messages or take a photo, after a year i often cant remember how to do the most basic actions, things i do on it multiple times a day, & i have to go through it as if i am trying it out again for the first time. Its like my brain resists learning.
Same basic experience here. It is one of the most fundamental features of ME/CFS, maybe even the most fundamental, and certainly one of the most important clues.
Yes, I improve very slowly too. When I go back to swimming, it takes a couple of years to get my position in the water right. It also takes me a lot longer to pick up new tunes than it used to. But I do eventually build muscle, and I do improve at skills—my ability to play music's unrecognisable compared to a year ago, and I've also come a fair way with learning cryptic crosswords. It's just that everything takes ages and I can only use the benefits when not in PEM.
Just recently I was speaking with a neighbour about plans to travel to America for a very short trip in the next couple of years. I said the problem I will have with ME is that I will have to spend afternoons and evenings lying down - so I would not be able to do much sightseeing. Not to mention how I would even cope with a long haul flight. I would have to have seat that is lying down. Anyway, my neighbour said I should just work on building my fitness up slowly. I said to him that is not how ME works! ME has stuffed up, the basic training process. Every time I try I get PEM which takes me back to square 1 again. Repeat cycle. It is only when my ME is at a lower level like moderate that I am able to do more than at a severe level but it is still a precarious situation and basic training still doesn't work the way it should. This is an area that should be looked at @rvallee Thank you for raising it.
I've been vaguely aware of this effect in many physical and cognitive ways for a long time and I've told myself it's due to getting old but about two weeks ago I got the shock of my life. Occasionally I play piano accompaniments for my one remaining violin student and I've found that it frees up my severely arthritic fingers quite a bit. So I decided that it would be a good idea to play some scales just for 5 minutes or so once or twice a day. I chose C major ( the easiest one with all white notes). At first I got the left hand fingering mixed up which surprised me a bit but I presumed a couple more runs through and it would right itself - but it didn't. Two weeks later and dozens of repetitions and I'm still getting it wrong when I go back to it after a break. The scale is 4 octaves up and down and the mistakes happen in the last half going down. It feels as though my brain is working very hard but it just can't keep up the effort in the end. The precise muscle memory I've had all my life seems to have just gone in this particular instance and is proving extremely difficult to either retrieve or re-learn. This is the first thing about ME that has really shaken me.
I'm ... not really sure about that effect, at least for me (definitely non-standard ME). Some things I do seem to improve at, such as hitting a limit of maybe 6 wheelbarrow loads of soil on the first attempt (driveway patching), but a week or two later, managing maybe 20 loads. My first bike ride of the season might be a couple of km's, but I can gradually build up to 40 km rides. For other activities, it's hard to notice improvement. Despite all the posting I do on these forums, I think my typing skill is deteriorating. There's also the problem that variations in ME severity affect my physical limits far more than training does. I might not feel like doing more than my usual 45 minute walk for months, but then something changes and I feel like going for a multi-hour hike, and might feel that energetic for weeks or months, and then abruptly go back to feeling lethargic. If this "lack of training effect" can be proven to be common in PWME, that could be and important trail to follow.
I get the same problem. It's the absence of that particular focus used for playing. It should be just a switch into a different attention mode, but if it's not there, nothing will come together no matter how hard you try. In fact, working at it seems to chase it further away. If I haven't begun to slip into gear after about 10 minutes, I just stop. If I keep trying I know I'll just get frustrated and dispirited. That type of concentration probably needs a lot of cognitive bandwidth, and if that's the case, it's not surprising we struggle with it. PEM could reduce gigabit broadband to two tin cans joined together with string. It may not be the same for everyone, but for me muscle memory is directly linked to the concentration thing. The music I play is simple but fast, and the only way to play it is to sever all conscious links between brain and fingers—think about it for a nanosecond and you're lost. But the system doesn't work if you can't switch into the mental mode. It might be worth avoiding the piano for a few days, and then trying small experiments, without any expectations of how far down the scale you'll get, just to see if your music brain happens to be at home today. You might find it sometimes is.
Glancing at mention of the cognitive side of things a good example of how ME has affected me cognitively is that I only read a tiny paragraph of rvallee's post and even though I liked everyone's post I still have yet to read. This is because I get too mentally exhausted to post so I quickly say what I want to say first and go back eventually and read the thread. I have a feeling when I do read all posts I will want to comment again. But I will rest first.
Yes, I definitely experience this or some version of this to some extent! I have given up physical exercise (other than what is essential - walking around the flat, very short local walks for food, occasional walking around public transport for work) because it always leaves me so wiped out. My work is as a musician (although I am now trying to ease into a kind of early semi-retirement thanks to ME/CFS). Within music work I will usually either be doing something that requires real-time concentration and execution (e.g playing music live in a rehearsal / live recording session or performance), or something where I can essentially choose when I'm concentrating and take breaks whenever I need to (e.g production, mixing, editing, writing arrangements / scores), where there is no real-time pressure aspect to the work, I can press play & pause whenever I like, edit and manipulate things etc. I have definitely noticed that with the real-time stuff, especially stuff that also requires intense concentration (the best example of this from my life would be improvising in jazz - it's happening in real time and you're having to keep track of constant harmonic changes from bar to bar which determine very specifically which notes you can play), my technical ability has essentially plateaued from about 5 years ago when my ME/CFS kicked in hard and started affecting my life. Every so often I go through a period of practicing jazz improvisation again, trying to gradually push up the tempo I can feel comfortable and express musical ideas at in real time, but after a week or two I'll get completely exhausted and won't have made any real progress. This is quite interesting because it's a combination of mental / neurological (being able to keep up with the quickly changing chords), and physical (my hand / finger / arm muscles and tendons being trained enough to execute precision movements at fast tempos)... and yea I don't seem to be able to increase my capacity at all in either of those anymore! Very frustrating - especially in relation to jazz / improvising where there is (depending on taste) an important element of kind of "high-wire act" making up part of the art - seeing / hearing someone try to express a musical idea that has just come to them, and which is right at the limit of their technical capacity to execute! I do feel frustrated that that aspect of the art-form appears to no longer be something I can pursue, especially after all the years and money spent on studying and training in such an elite and niche art-form with very little mass-appeal to begin with! When it comes to the non-real time / non-performance work - editing, mixing, production etc. I definitely find it a lot harder and slower than I would like to, and I know I would be able to get a lot more done if I wasn't ill, but it is noticeable that the non-real time aspect removes a layer of intensity / stress. As long as I am working on it by myself (e.g without a client in the room looking over my shoulder) that is. But I do still find it super hard and it requires a lot of will power for me to keep at the task rather than just stopping - because something about the effort of having to concentrate on so much fine detail and listen to intensely seems to make me hyper-aware of all the many intense unpleasant sensations in my body, which makes me want to stop and do something less cognitively demanding and more distracting - e.g watch TV or game. So sitting and concentrating hard ends up feeling like a real grind where I'm forcing my body through an unpleasant experience. And this definitely has not lessened at all despite me trying to do more at-home non real-time work, and less live performance based stuff.
I've been able to do moderate exercise on and off for the past 25+ power walking and light weights for my arms. I can not increase muscle or do resistance exercises in my legs. This makes my legs shake and I will get PEM. I've been able to increase muscle in my arms this past year. Looks noticeably good. At 62 years I am only trying to keep what I have and build muscle in my arms at this point. I am not trying to get 'fitter' and make myself worse long term. I'm assuming the power walking I'm doing isn't causing unknown 'damage' because I've been at it for many years and haven't gotten worse- that I'm aware of. I can also do core muscle building which is hard but this helps with my overall strength w/o pushing too much. There are weeks I can do a lot more without payback PEM and other times I can't do 3 reps weights. It's not just a muscle thing that's going on for sure.
I have never been able to do any sort of fitness or strengthening regime since getting ME/CFS because fulfilling my daily responsibilities and needs uses up all my capacity and more. I was encouraged to do some very simple horizontal brief pilates exercises many years ago, and just the few minutes extra per day doing this tipped me into PEM. Other times I've tried to add just a tiny bit of extra walking, bending stretching or whatever has always tipped me into PEM.
I've mentioned elsewhere how I tried to exercise my way back to health with twice weekly intensive pilates sessions. I just got worse. The studio would send out email newsletters each month, with a story about their client of the month, how they had transformed themselves with, of course, the help of the studio . Needless to say, I was never a client of the month, because my transformation was negative. Yes, the pilates studio, which focussed on rehabilitation, did a whole lot of measurements at the beginning, strength, balance. Things got worse, causing the staff to look a bit uncomfortable. The balance test was particularly noticeable. Balancing was rubbish after 6 months of intensive work partly designed to improve it. I wonder if it is the speed and precision of neural messages to and/or from the muscles? Balancing requires very fast, often small adjustments, and clearly something wasn't happening well enough. I get that muscle spasming shake when muscles are pushed beyond capacity - that was a big feature of my pilates training at that time, and it just got worse over months. What causes that? It would be interesting to know if people with ME/CFS hit that point quicker than other people, and whether training reduces or increases the time or force needed to get to the shakes. This is what happens:
Yeah that, I didn't mention but I go back and forth on those balance exercises being a bit easier, then sometimes I'm so wobbly that I can barely do the very first part. A few times, up to a few days, it was actually easy. It's so easy to confuse this as progress, then BAM it goes back down, and I don't think this is all PEM. Or even mostly. PEM makes this worse, but there's a more basic thing happening here. What controls this?! This has to be relevant! It's so damn weird.
It does feel like it's this constant overshooting. It should take tiny adjustments to balance it all out, but instead movements constantly overshoot back and forth. Like some delayed reaction that just gets us always behind because by the time you get feedback from a first movement, you're already overshot and have to compensate for that, then compensate for it by overshooting in the opposite direction. Something similar could be happening with the jerky vision that is pretty common. Like we're seeing with a low refresh rate, like neurons aren't processing fast enough. This really looks like a nervous system problem to me. It just can't be the muscles themselves. Especially when you reach a stage where they are sometimes strong enough to do it, but can still regress back for no apparent reason.
Yeah that too. I can get it even if I barely challenged my muscles. To me it feels exactly like the same thing when you train very hard, like doing a max repetition lifting weights. Except it happens from absolutely minimal effort, but even worse is that it can happen to muscles that were barely used.
Our immune system? I don't experience pain but there are days/weeks get deep muscle fatigue/soreness right down to the bone. I can barely touch my toes I feel so stiff. I just wake up with it. There are times when I start out for my power walks and feel stiff/sore and after 15 minutes I feel really good. The next day I feel great. There are times I start out walking feeling great but the next day my immune system feels activated from an immune response(?) and I feel 'viral' for the following weeks.
