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Returning to riding after ME/CFS

BasswormBassworm Posts: 21
edited February 2016 in Health, fitness & training
Hi All,

My name's Mike. I was for many years a regular XC racer and an everyday road commuter. I used to ride a 7 mile each way commute every day plus recreational and training rides. Around 2000 I noticed my speeds getting lower, my recovery times longer and I was always tired, some days worse than others. In 2001, after a long process of elimination I was diagnosed with Chronic Fatigue Syndrome (Brought on I suspect, by ridiculous amounts of stress at work but that's another story).

After the diagnosis I tried to maintain some kind of fitness by riding as much as I could, albeit over much shorter distances and at lower intensities but eventually it got too much and I had to admit defeat and put the bikes away.

Now seven years on, I no longer suffer the symptoms of CFS most of the time, and would like to return to regular riding, not least because having been very fit in the past it annoys the hell out of me that I've become a such a unfit sloth. Also I want to get rid of the excess weight that i've accumulated in this period of relative inactivity.

I'm 50, 5'11" and around 12.5 stone. I've done a few short flat rides recently (And was pretty horrified at how slow I am now), and would like to start increasing the effort and duration but frankly I'm terrified that I might overdo things and risk setting off another bout of the illness. Anyone here returned to regular riding after suffering from this? How do you guys suggest I approach improving my riding fitness without risking overdoing things?

Cheers All,
Mike E.

Posts

  • Hi mike,

    I am 16 years old and have had M.E for 2 years now and it has recked my life.

    I was a county cricket and hocky player and a regular mountain biker but i have not been able to continue with any thing. I have put on weight and lost all my fitness. I have no social life as all my effort goes in to school.

    Do you have any advise about how to get better?

    To try to answer your question i am just about to start a graded excersie programme with a physiotheripist. Apparently, very small stints of regular exersice like a 5 min walk every day for the first two weeks and then a 10 min walk the next e.t.c. gradually builds you up with out the horrible symptoms you get if you push to hard. It takes time but as i am sure you know making any progress with CFS takes time. The problem i have is i try to do to much and that just makes things worse, i am only just accepting my condition and i guess that is the first step.


    Good luck and i hope you continue to improve.

    Cheers,

    John
  • supersonicsupersonic Posts: 82,708 Lives Here
    I have M.E., and have done since a bad bout of glandular fever. I have been seen by one of the countries leading experts in this field, and have had great advice (a lot is available on the web too).

    John hits the nail on the head - it takes time! You need to pace yourself, and never, EVER overdo it or do too much, even if you feel well at the time. You'll pay for it.

    But with experience you can lead a rewarding life, and learn to cope, and ultimitely fully recover. I am much better than I was a couple of years ago, ride quite often, get out much more and erm, post rather a lot on here ;-)

    CBT also works for many. look up 'exercise pacing'.
  • BasswormBassworm Posts: 21
    Hiya,
    Guys, many thanks for the replies, they're very encouraging. I suppose I'm fairly lucky in that the illness wasn't too debilitating in my case (My friend's son has suffered far worse from ME, he's hardly left his home in the last eight years), and that the worst of my symptoms have largely disappeared, although I'm still very aware that overtraining could easily tip me back over the edge.

    Supersonic, I've checked out exercise pacing, looks very interesting. Many thanks for that.

    Cheers,
    Mike.
  • andy83andy83 Posts: 1,557
    I have FM (Fibromyalgia) and as previously said its all about taking time and pacing yourself. Im my own worst enemy as more often than not i do far too much.

    I can have really bad flare ups and its just time then to stop. one thing i always find helps is although i do my commute to work i will only do a long bike ride when i have a day off after to complety recover
  • I was diagnosed with Fibromyalgia about a year ago and have now got over it (although i have a nasty bug at the moment!). I had mickel therapy and acupuncture, both of which helped to no end!! I am back into racing and training hard and not doing too bad so far....
    "Second place is the first loser"
    Orange Five SE
    Orange P7 one
  • Hi All,

    I'm revisiting a post I put up seven years ago (Yikes, where did the time go?). It didn't go well at the time, and there were several aborted attempts to get back into regular exercise, all failed dismally.

    Finally, years on, things seem to be more positive. On the plus side, this summer, for the first time since 2002 I've been able to put in a couple of rides per week, averaging around 45 minutes each, both on and off road. And I'm thoroughly enjoying it. The return to some kind of fitness has been aided by a supplement called D-Ribose which has made a huge difference to my post-ride recovery. Oh, and I treated myself to a rather nice Whyte 29C to replace my knackered old Klein, blimey, hasn't bike technology moved on?

    On the minus side, I'm still aware that the illness is an evil little censored that still lurks in the shadows waiting to catch me out. Also, I'm now 57 and acutely aware that I'm never going to get back the kind of fitness that I had before I packed it in back in 2002. And regaining any kind of race fitness is definitely out of the question.

    So, to the guys who replied so supportively to me back in 2008, are you still around? Are you still riding regularly?

    P.S. Is this a candidate for the longest gap between post and reply? :-)

    Cheers.
  • brianbeebrianbee Posts: 330
    Hi All,



    . Also, I'm now 57 and acutely aware that I'm never going to get back the kind of fitness that I had before I packed it in back in 2002. And regaining any kind of race fitness is definitely out of the question.

    So, to the guys who replied so supportively to me back in 2008, are you still around? Are you still riding regularly?



    Cheers.

    Not around in 2008, but I can give you some general pointers about achieving good fitness in you mid 50s

    There isnt an automatic ceiling on fitness brought on by age, but some things make it more difficult to acheive

    In general terms it takes you 4 to 6 times longer to get from point A to point B than it did in your 20s/30s

    So if, going from where you are now, to where you would like to be, would have taken 6 months as a 20 odd year old. your looking at between 2 and 3 years to make the same journey in middle age. And some times it feels as if your making no progress and sometimes it feels like your going backwards. but you can year on year make quite dramatic headway. If you can get back to being as fit as you were as a 45 yo, is dependent how fit you were back then. I was only quite fit ,myself as a 45 yo, But I am considerably fitter now as a 56 yo.

    If you cant be quite as fit now (and that's far from certain), you can get awfully close, if your prepared to stick at it for a few years
  • {Quote}
    In general terms it takes you 4 to 6 times longer to get from point A to point B than it did in your 20s/30s

    So if, going from where you are now, to where you would like to be, would have taken 6 months as a 20 odd year old. your looking at between 2 and 3 years to make the same journey in middle age. And some times it feels as if your making no progress and sometimes it feels like your going backwards. but you can year on year make quite dramatic headway. If you can get back to being as fit as you were as a 45 yo, is dependent how fit you were back then. I was only quite fit ,myself as a 45 yo, But I am considerably fitter now as a 56 yo. [/quote]

    That's certainly my experience at the moment, at times it feels like I'm achieving nothing. Although that used to happen in my fittest days occasionally. Add to my age, a work schedule that allows me at best two, maybe three rides a week, some weeks not at all. But I'll get there, I'm determined. Thanks for the encouragement.
    If you cant be quite as fit now (and that's far from certain), you can get awfully close, if your prepared to stick at it for a few years
  • brianbeebrianbee Posts: 330

    That's certainly my experience at the moment, at times it feels like I'm achieving nothing. Although that used to happen in my fittest days occasionally. Add to my age, a work schedule that allows me at best two, maybe three rides a week, some weeks not at all. But I'll get there, I'm determined. Thanks for the encouragement.

    I'm reluctant to write reams as you have a habit of disappearing for 7 years

    But my hard won experience has shown me that the problem at our age isn't the lack of opportunity to exercise, but the opposite, of letting your determination mean you do to much when you do

    Its the recovery period that extends with age. Iif your two days in between exercise sessions isn't sufficient, not only for the muscles to recover, but also improve. You may be sabotaging your own progression by effectively ''over Training''. Dropping it to say two sessions a week and three days recovery. or limit the amount of effort so you are fully recovered for you next session. may make things happen quicker. I know its counter intuitive, but that's the way it is. more haste less speed

    There is an optimum amount of effort and an optimum recovery period for that level of effort and Its finding that balance point that is both extremely difficult and also the secrete of a fit middle age. Rest doesn't mean no exercise, just a lot lighter exercise, stretching and light movement improve the recovery time quite substantially. No matter how busy you are, you can find 20 mins to do stretching a day

    Ive got quite an effective stretching session I can do with out getting off the settee
  • I'm reluctant to write reams as you have a habit of disappearing for 7 years

    Guilty as charged. There are mitigating circumstances though, yer honour. :-) But please don't be afraid to expand in detail, I'm planning to be around for a while this time.
    But my hard won experience has shown me that the problem at our age isn't the lack of opportunity to exercise, but the opposite, of letting your determination mean you do to much when you do

    Its the recovery period that extends with age. If your two days in between exercise sessions isn't sufficient, not only for the muscles to recover, but also improve. You may be sabotaging your own progression by effectively ''over Training''. Dropping it to say two sessions a week and three days recovery. or limit the amount of effort so you are fully recovered for you next session. may make things happen quicker. I know its counter intuitive, but that's the way it is. more haste less speed

    I'm certainly beginning to realise that it's no longer a matter of simply 'getting out and riding' any more.
    There is an optimum amount of effort and an optimum recovery period for that level of effort and Its finding that balance point that is both extremely difficult and also the secrete of a fit middle age. Rest doesn't mean no exercise, just a lot lighter exercise, stretching and light movement improve the recovery time quite substantially. No matter how busy you are, you can find 20 mins to do stretching a day

    I've got quite an effective stretching session I can do with out getting off the settee

    And that's what I'm trying to do at the moment, albeit with mixed success, though that's mainly due to being away from home so much. It would be nice to have a bit of routine to my rides, but that just something I have to put up with. But I take your point about recovery and not overdoing the exercise. So far I think I've managed to avoid that. Like the idea of sofa exercise too. :-)
  • brianbeebrianbee Posts: 330
    I'm reluctant to write reams as you have a habit of disappearing for 7 years

    Guilty as charged. There are mitigating circumstances though, yer honour. :-) But please don't be afraid to expand in detail, I'm planning to be around for a while this time.
    But my hard won experience has shown me that the problem at our age isn't the lack of opportunity to exercise, but the opposite, of letting your determination mean you do to much when you do

    Its the recovery period that extends with age. If your two days in between exercise sessions isn't sufficient, not only for the muscles to recover, but also improve. You may be sabotaging your own progression by effectively ''over Training''. Dropping it to say two sessions a week and three days recovery. or limit the amount of effort so you are fully recovered for you next session. may make things happen quicker. I know its counter intuitive, but that's the way it is. more haste less speed

    I'm certainly beginning to realise that it's no longer a matter of simply 'getting out and riding' any more.
    There is an optimum amount of effort and an optimum recovery period for that level of effort and Its finding that balance point that is both extremely difficult and also the secrete of a fit middle age. Rest doesn't mean no exercise, just a lot lighter exercise, stretching and light movement improve the recovery time quite substantially. No matter how busy you are, you can find 20 mins to do stretching a day

    I've got quite an effective stretching session I can do with out getting off the settee

    And that's what I'm trying to do at the moment, albeit with mixed success, though that's mainly due to being away from home so much. It would be nice to have a bit of routine to my rides, but that just something I have to put up with. But I take your point about recovery and not overdoing the exercise. So far I think I've managed to avoid that. Like the idea of sofa exercise too. :-)

    You perhaps need to lok at your fitness level more holistically, rather than focus so much on the bike or you difficulty in getting regular rides on it.

    I also had a long period of illness that left me in very bad shape, So i selected a number of areas that needed drastic improvement. these being ( in no particular order)

    Aerobic
    balance
    coordination
    flexibility
    reaction
    strength and endurance

    All of those are necessary to ride a MTB well,( in fact for general living) but non of them are dependent on using a bike to improve. Most of them can be done quite easily in a hotel room if your away from home or in the sitting room if its raining and you don't fancy pounding the streets

    You can be as creative as you like. I practice my balance by walking on 3ft high.fence about an inch wide, to start with I got two steps, now I can go till i run out of fence, but you can just stand on one leg

    I improved my co ordination/reactions by throwing a super ball at the wall and catching it, first right handed, then left handed then with out looking, but you could teach yourself to juggle

    Flexibility just requires a yoga vid

    and body weight training can sort out your muscles

    Clean the whole house in an hour, that gets your heart rate up and will get the Mrs onside

    I use my 8 yo niece for weight training, We do the ''hockey kokey'' and I keep lifting her above my head on the chorus,OH the hockey kokey LIFT OH the hockey kokey LIFT, five mins of that and Im toast and she wants to do it again and again
  • supersonicsupersonic Posts: 82,708 Lives Here
    I have ME, and it is an evil disease - it was brought on from prolonged glandular fever and an adrenal tumour. It waxes and wains - I agree very much with the above, that not overdoing it and good recovery is essential, not just for the general population, but especially for people who have had illness like this in the past as you can relapse if you overstress the body.
  • supersonicsupersonic Posts: 82,708 Lives Here
    Ooops, just seen I said the same in 2008 haha!
  • Ooops, just seen I said the same in 2008 haha!


    Heh, good to see you're still around!
  • Interestingly, I had to go without any riding for a period of ten days due to being out of the country. The first ride I did when I came home, I went up a hill I haven't even tackled in fifteen years, and felt great at the top of it too. Left off riding for another five days, then did the same hill again. even faster this time - Strava is great as a comparison tool. Which suggests that your advice about longer recovery periods is definitely sound, so thanks for that.

    Regarding the non-riding fitness, I'm reasonably lucky that my day job includes a fair amount of physical exertion, and definitely lots of coordination and balance, so some of that is covered already but I take your point about doing stuff at home - Mind you, my kids are far too huge to lift over my head these days so I'll have to find an alternative :-) Quite like the idea of yoga so will investigate that. As for cleaning, I do all that already when I'm home (My other half is a teacher and works far harder than I ever do so it seems only fair).

    Cheers!
  • supersonicsupersonic Posts: 82,708 Lives Here
    A trap I fall into is that feeling great thing - I then go and do more! When maybe I should just sort of be careful lol. But you will know what works for you from trial and error. My last big foray was an 8 hour epic in the peaks - and five days in bed! In some ways is a good mindset, to push. But it can bite you ;-)
  • I know this thread is a couple of weeks old, i have not been diagnosed with ME/CFS bit i wanted to know what were the main symptoms that people experience, i have told me doctor of my concerns but he keeps treating me for migraines etc but the symptoms i have never get any better and just to stay the same.

    1. I wake up nearly ever morning with flu like symptoms, nose blocked, sore head and finding it hard to breath
    and a wake up a bit confused and light headed with zero chance of doing anything of any effort, muscles are
    a little sore does not matter if i have exercised or not and ears are blocked as if i have an infection.

    2. Don't sleep very well and wake up numerous times during the night.

    3. Migraines a lot and feeling exhausted for no reason most of the time getting better by late afternoon
    around 4pm

    4. Sometimes i getting hot flushes even when its cold outside and sweating again even if there no heating on
    and its cold outside.

    I was on my bike around 150 to 200 miles a week now i feel i could not do 20 miles a week without being tired and needing a sleep in the afternoon, i have tried numerous times to try and get back out but don't feel the my body wants too but my mind does, i just want this to end and for my energy to come back and not feel like censored every day or every other day.

    My doctor does not have a diagnosed and is not sure what to do next and just looking for someone else to come with the answer i think which is becoming very stressful for me a well.

    I was wondering if these symptoms sound like what anyone else has experienced so i can at least speak to the doctor about it.
  • I know this thread is a couple of weeks old, i have not been diagnosed with ME/CFS bit i wanted to know what were the main symptoms that people experience, i have told me doctor of my concerns but he keeps treating me for migraines etc but the symptoms i have never get any better and just to stay the same.

    I can't tell you whether you have it, but what I can do is give you a run down on my symptoms when I was first diagnosed. And at the time (I don't know if it's different now) there was no way to diagnose, it was only by eliminating all other possibilities in the end. Bear in mind that not all sufferers experience the same symptoms.
    1. I wake up nearly ever morning with flu like symptoms, nose blocked, sore head and finding it hard to breath and a wake up a bit confused and light headed with zero chance of doing anything of any effort, muscles are a little sore does not matter if i have exercised or not and ears are blocked as if i have an infection.

    Can't say i remember having anything quite like this.
    2. Don't sleep very well and wake up numerous times during the night.

    Definitely, though insomnia is something that's plagued me most of my life anyway.
    3. Migraines a lot and feeling exhausted for no reason most of the time getting better by late afternoon around 4pm.

    Not in my case, never had a migraine. But the constant fatigue, oh yes, and made worse by sleep disruption.
    4. Sometimes i getting hot flushes even when its cold outside and sweating again even if there no heating on and its cold outside.

    Yep. Huge problems with temperature regulation. Some nights I'd fill the bed with sweat and have to change the sheets during the night, others I'd be shivering under two quilts.
    I was on my bike around 150 to 200 miles a week now i feel i could not do 20 miles a week without being tired and needing a sleep in the afternoon, I have tried numerous times to try and get back out but don't feel the my body wants too but my mind does, i just want this to end and for my energy to come back and not feel like shoot every day or every other day.

    You couldn't be suffering from overtraining could you?

    Although I'd largely given up racing by the time it started, I was still commuting (70 mi) and road riding for fun (50+ miles) each week. I started to notice that I was struggling to do the big hill at the end of my commute (The climb up to Luton airport) each day, and my recovery times were getting longer. The ride home was just as tiring, even though it was mostly downhill. At work during the day I'd find I was wiped out by early afternoon, and would often slope off to the loos for a nap. As it got worse I'd find myself getting tired more often during the day, even falling asleep when driving. At that point I realised there was something seriously wrong and saw my doc but it took several visits to him and to various specialists before CFS was confirmed. At that point I'd pretty much given up cycling completely. As it got worse, all exercise went out of the window. That was 2001 and it's taken me until now to get back into regular riding.

    As an aside to this, I suspect that the cause was a combination of stress and fatigue that sparked me off. Many months prior to me first noticing it, I was doing stupid shifts, should have been 12 hours but were regularly in excess of 18, and at a high intensity too. Picked up something fluey/viral in that time and whatever it was knocked me for six. Of course, I kept on riding whenever I could, and probably made things worse.
    My doctor does not have a diagnosed and is not sure what to do next and just looking for someone else to come with the answer i think which is becoming very stressful for me a well. I was wondering if these symptoms sound like what anyone else has experienced so i can at least speak to the doctor about it.

    Just keep on at him, if you're not happy possibly look at a referral to a specialist? In the meantime, get plenty of rest, don't overstress your body.

    Good luck, I hope you get to the bottom of this soon.
  • ZingzangZingzang Posts: 196
    I know this thread is a couple of weeks old, i have not been diagnosed with ME/CFS bit i wanted to know what were the main symptoms that people experience, i have told me doctor of my concerns but he keeps treating me for migraines etc but the symptoms i have never get any better and just to stay the same.

    1. I wake up nearly ever morning with flu like symptoms, nose blocked, sore head and finding it hard to breath
    and a wake up a bit confused aned light headed with zero chance of doing anything of any effort, muscles are
    a little sore does not matter if i have exercised or not and ears are blocked as if i have an infection.

    2. Don't sleep very well and wake up numerous times during the night.

    3. Migraines a lot and feeling exhausted for no reason most of the time getting better by late afternoon
    around 4pm

    4. Sometimes i getting hot flushes even when its cold outside and sweating again even if there no heating on
    and its cold outside.

    I was on my bike around 150 to 200 miles a week now i feel i could not do 20 miles a week without being tired and needing a sleep in the afternoon, i have tried numerous times to try and get back out but don't feel the my body wants too but my mind does, i just want this to end and for my energy to come back and not feel like shoot every day or every other day.

    My doctor does not have a diagnosed and is not sure what to do next and just looking for someone else to come with the answer i think which is becoming very stressful for me a well.

    I was wondering if these symptoms sound like what anyone else has experienced so i can at least speak to the doctor about it.
    A diagnosis of ME/CFS is a diagnosis of exclusion, i.e. all that is certain is that they don't know what's wrong with you.

    I've had ME/CFS for over three years now and it has finished all meaningful cycling for me, possibly for good. I got something like it 30 years ago and it took me around 10 years to recover to the point where I could start cycling properly again. I took up competitive cycling again 6 years ago and then 3 years later the ME/CFS came back with a vengeance, the symptoms being far more disabling this time round.

    ME/CFS is a life-changing illness, and important biomedical research is currently being done in America and Norway to try to find out more about what the disease is and how it works. Sadly in the UK the majority of research into ME/CFS over the last 30 years has been conducted by a small but tremendously influential group of psychiatrists, who have long worked on the hypothesis that ME/CFS is a psychosomatic condition that is characterized by the patient having false illness beliefs; in other words, patients are not physically ill at all but only think they are.

    There has been a huge backlash against this model of ME/CFS by patients and patient charities, as you'd expect (many patients have been made far worse by the treatments forced on them by the psychiatrists), and the small band of psychiatrists are currently fighting a losing battle to have their now widely discredited "research" taken seriously in the light of an increasing body of evidence showing a wide range of genuine biological abnormalities in people with ME/CFS.

    You will get the most accurate and up to date info on ME/CFS if you visit the UK's ME Association website or the influential US-based forum Phoenix Rising: http://forums.phoenixrising.me/index.php

    You can read more about my own experience by trawling through some of my earlier posts on BR.
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