Discussion in 'Lifestyle Management' started by Scavo86, Mar 22, 2010.
I don't mean this as a snide remark, are any of you planning on getting tested for XMRV?
when it's available at a price I can afford yes
Thanks ever so much to one and all for the info on this thread, more than I ever could have expected, you guys never fail to surprise me with your immense knowledge.
I think it may be good to get tested for XMRV at some point if its afforable, which its not for me at this point, at least the testing methods from WPI, which I beleive that is the only reliable source at this point. Although testing positive has no baring on my treatment as it already addresses retro-virus amongst others.
For most of us, as we have discussed in this thread, it is VERY VERY important to understanding our limits, whether its one push-up or 1hr work outs.
We can kill ourselves on the spot for over doing it!!!! Sorry to sound so harsh and blunt, but thats the reality of this disease.
Heart dysfunction is secondary to our nervous system inability to adjust to exertion, especially before our bodies are warmed up.
The beginning of an exercise period is generally the hardest for us, as our dysfunctional ANS tries to adjust to exertion, once warmed up a bit we function better.
The ANS directly reflects our respiratory function...heart rate, cardiovascular function and so forth.
To me, testing is inconsequential as you have these issues associated with ME or dont. Yes the virus and chemical loads are one thing, which I had many. But the exercise intolerance is really the hallmark of this shit disease.
Always be patient and carefull with exercise of any sort, which is hard for us, as ME patients are generally very motivated folks!
Very true, Mike - I think the real discipline with ME lies in not doing stuff, and that's much, much harder than doing stuff. Keeping to that discipline - of doing less than you want, all the time, for the sake of your eventual recovery - is extremely difficult and requires a mental effort well beyond that usually needed for normal sports training in healthy people, or even rehab training for those with health conditions that respond well to that.
Thanks, heapsreal - I had wondered if people's bodies only responded to a more prolonged demand and sort of physiologically "didn't notice" the odd rep here and there.
I can relate to this thread. Not because I do any weightlifting any more but because my short burst of strength hasn't significantly changed since I have become ill. However, walking twenty paces without feeling like I was punched in the head is now impossible. I cannot sustain any real level of aerobic exertion but can still lift my six year old onto my shoulder for a couple of seconds before I have to put him down. I generally have the same muscle mass as before.
This is one of the flaws exploited by doctors when they test your resistance strength. They are testing anaerobic strength and reporting it as normal physical functioning. People don't exist anaerobically anyone knows that after a few short seconds you switch to aerobic functioning in order to sustain physical functioning.
To do all the things healthy people do in a day we need to be able to sustain aerobic activity for long periods repetitively. Having said all that I still don't think I could take up weightlifting now. I can manage the occasional swim once a month if that, one length at a time for a max of 4 lengths. However the last time I went on the last length my body literally stopped with 10m to go. Glad I just made it to the shallow end. I held on to the rope and did my usual statuesque pathetically co ordinated walk to the end. Only had to go to bed for two full days to recover.
If any doc ever recommends GET to me, as if I don't already know it doesn't work, I will at least know that I have enough anaerobic strength, two seconds worth, to punch him on the nose before collapsing in a heap on the floor from failed aerobic capacity!!
I'll try and express a model/theory I use as simply as possible - it's probably not original and may even be incorrect but it guides my thinking not just in issues like this but in general
in just existing you are doing damage to your body - the simple effort of pumping blood damages your body - moving damages your muscles - repairing this damge in itself is damaging but in most there are sufficient resources so the cumulative effect is postive - i.e. your body can exist, you can live and the body can repair all the damage caused with no problem - normality - as lived by normals
with M.E. somethign is wrong with this - too little repair is done or too much damage is done by simply existing to allow much extranious activity - and if you exceed that small surpless you are faced with a situation where insufficient repair is done to put you back to the day before - and operating with a damaged system causes more damage than the same activity with a functioning system - if your not careful you can rapidly end up at a point where the damage inflicted simply by repairing damage let alone doing anythign else is greater than the damage repaired - a full on crash - and if it's bad enough even constant rest isnt enough to allow balance of repair/damage to be positive - ie you can never get better unless you can fidn some way of either reducing the damage or increasing the efficiency of the bodies repair systems
with me the critical component was diet - cut out all the additives - all the toxins I could - make the system run more efficiently - ie cut the damge caused by simply existing - it's not perfect but it gave me a buffer zone - allowed me to get a little ill (minor crash - crunch) without to a total collapse - gave me room and time to correct while it was still possible
aerobic exercise uses the whole body for significant periods of time - whilst the damage caused by walking 100yrds may be small the cumulative effect because it's system wide activity can be massive - ie a lot of damage to repair
wieght lifting exercises specific muscles for a very short time - so whilst the inital damge may be higher (ie doing a squat does a lot more damage to your muslces that walking a step) it's localised and much shorter duration - ie the cumalative damage is much less - and you end up stronger so less damage is done by everyday living - win win
but - and this is very important - this only works IF you have the spair repair capacity to repair the damage caused -if you dont your goign to crash - if you cant repair the damage caused by simply existing (eg your in a crash no matter how mild) then lifting will damage you - so dont
which is the reason for my initial proviso in my first post - IF you can manage unassisted most of the time then lifting sensibly shoudl be ok - if you cant then dont even consider it
I hope that makes sense
Thanks everyone for all the info. It is really, really helpful. I have had a big psychological block about this. And of course endless advice that all I need to do is exercise.
Wonko, somehow I didn't realize I was doing GET, but of course, that's what Medicare demands when you do PT. The reason I tried it was reading that people with Lyme won't get better unless they repair "deconditioning." That may be true, but I have more than Lyme going on.
It's great to read people's protocols. And the spare repair is a good model, I think. Thinking back, I knew every time when I was crossing the line, I just didn't want to pay attention. I hope it is not too late for me. (Where can I buy that t-shirt? )
Knackered, I'm not sure what made you wonder, but I do plan to have the XMRV culture test. It should be here in time for next week. If nothing shows, it doesn't rule out a latent infection. But if it is positive for active infection, I really want to know it. If there are studies that will take me, I hope to sign up. And I do believe there will be treatment down the road.
Good luck to everyone. And thanks again for the question and all the comments.
Kolowesi--Its never too late
To answer a couple of questions Yes, I plan on getting tested as soon as an antibody test is available.
And no, I'm not lifting at the moment. Over the course of my illness I've been one of the fortunate ones that's had remissions and near remissions. Last time I tried to lift (about 18 months ago) I was quite literally incoherent afterward according to my hubby. Going through a bad patch atm and have learned the hard way not to try and push it as much as I would like to.
I just want to say I agree with all the advice you've had here. I did weight training, no cardio/aerobic exercise at all, when I was in remission and it was FANTASTIC and made me just feel better and better. DEFINITELY go for it if you feel ready.
As far as the discussion on exercise tolerance goes, yes you can do some non-aerobic exercise when you are in really good remission. Over 25 years I have been bed-bound and near coma-like with this illness for 3 years and also been in enough remission to do a 1 hour workout every day and work full time. At the moment I have very high RnaseL cleavage, low CD57 NK cells and high autoimmune antibodies, a repulsive list of bacterial infections etc etc. and I cannot get up one flight of stairs without resting half way, but when I was feeling pretty good, I still had this illness, whatever it is.
So to those of you who feel corpse-like (like me currently) PLEASE DON'T LOSE HOPE, you can go through some much better times where you only feel mildly ill and are only slightly limited compared to healthy people. Honestly.
Apart from the advice you've already had,
1. build up very slowly at first, never push it to the lactic acid phase, and use pathetically tiny weights, building up very gradually. Trust you own body, it knows what is best. I was doing 3 sets of 10 reps for each muscle group with a brief pause between each. I did the same weight for all 3 sets. The bodybulider tactic of doing a shorter set with higher weight for the middle set is not a good idea.
2. always rest afterwards for the exact amount of time you have exercised. Rest means lie down without moving and, even better try to fall asleep. Eat a high protein snack just before crashing out for maximum muscle development.
3. You can use stretching exercises for warm up and cool down, though I did find that I could manage about five minutes in a very leisurely way on the rowing machine to get the blood flowing at the start of my workout. This is easier for your heart than running or anything where you are on your feet. Your heart will never manage to go as fast as it should do, so don't aim for any kind of speed at all, the idea is just to loosen up your muscles.
4. As Wonko has said, don't use large muscle sets (eg. squats). You need to exercise very restricted/small muscle groups at a time so stick to the girly machines - no free weights at all except the baby handheld bumbells.
5. Take a long time in the shower afterwards as the hot water will help your muscles.
6. Get your heart checked before starting this exercise campaign. I didn't and it was risky. I've had heart surgery since that last period of remission, my heart was in a truly terrible state and what I was doing could have been making it worse even though generally I felt better. You need professional guidance here.
OK, I'm sticking with this, as there are so many positive comments about it. But I'm struggling to understand.
I'm still quite fit, so I assume that to use my anaerobic syatem, I would have to do something fairly intensive - so light weights wouldn't hack it, as I'd still be aerobic (i.e. enough oxygen), yes? If I sit still and do nothing, I'm using the aerobic energy system, yes?
So, let's say I lift quite heavy weights, short duration long rest periods. My heart rate goes up quite high, presumably? This would presumably depend on the weight and my strength.
Alternatively I could do short but fast runs or swim sprints, yes?
If this is right so far, then the work I do is quite intensive, and most of you seem to be saying that this does not cause PEM as much as less intensive work over a longer period does.
Being an ex-triathlete, I've always favoured aerobic training, so I haven't really experimented with this. I do occasionally do press-ups and sit ups, say reps of 20 x 4, when I might be using my anaerobic system, but maybe I'd have to do them quite fast to achieve that?
Can anyone advise me what sort of exercise I should experiment with, please? Although feeling crap at the mo' so don't think I could do it for a while.
It seems you guys are lucky, on my good days I can walk down to Tesco and I don't feel so bad when I do.
I've just walked up my stairs to take some things in to the bathroom, come back to sit down and it feels as though I've just ran a marathon, all my muscles are aching, my breathing's shallow and laboured and I feel like throwing up. I'll have to sit down now until it passes. I can't imagine how I'd feel if I lifted anything of any significant weight, I wouldn't be able to do it.
When I first saw this thread it upset me a little bit, not because you can lift weights, I think it's really great you can. I was bothered because I feel as though we don't have the same illness yet what we have is called the exact same thing. That isn't your fault of course, yet it is something that I believe has been holding a lot of people back, there's lots of it on this forum. From weight lifting to homeopathy to prayer and miracles, I sometimes wonder when on earth I'm here. If it wasn't for posters like Gerwyn and Parvofighter etc I think i'd leave.
I know exactly how this thread would look to Joe Average, "If the people in this thread can lift 120kg, what the hell is wrong with the rest of them? Are they just lazy and Don't want to get better?"
I can't wait until this XMRV business is sorted out, then hopefully we won't have to put up with the monkey tennis.
Hi Knack, I'm really glad you posted that.
I have been sensitive and shy in the past about being open about my physical activity. Last week I did a couple of swims. This week getting out of bed is a real struggle. I would also lik eto stress that I can do about 10% of what I used to. So I don't think we can talk absolutes, it's all relative to the individual.
I too wonder constantly about the definitions of ME, CFS etc. (I know the terms are used interchangably). There may well be multiple diseases, but there is little or no understanding of this at present. The big problem in my mind is the common denominator of FATIGUE, which I think really clouds the issue. For me it's not fatigue that is prominent, it's feeling ill, but with associated fatigue of course. And by the way, when I swam last week, I felt crap before, during and after, but it's a decision I've made to stay active, at least to some degree.
Please stick with it on the forum, Knack. Your input is always appreciated, and it is important, as is everyone's. It's a rich source of knowledge, which, if we're smart, can lead to greater understanding.
All the best
I really liked your explanation about recovery from exercise, it was logical and simple and better put than any physician I have ever heard. As we exercise we then need to rest for our bodies to heal and recover. We have literally damaged our muscles and cell tissues and need to give them repair time. Even top athletes train like this to gain physical strength and capacity. In the rest day our bodies cannot summons up the physical demand required to to repair the damage done by exercise even in rest, that is why exercise is so damaging for many of us. We don't have the energy capacity required to recover. At least I think that's what you said.
Makes so much sense when put like that.
Knackered...Sorry you feel that way.
I think many of us actually do have the same illness. Im sorry you cant do much activity as I was once unable to even lean up, yes lean up for several years.
For the first ten years or so of my illness I could work out moderately with caution. After that I entered a progressive period of the illness where just speaking a few words would be too much effort. It actually was much worse than not being able to do one thing for myself. I was very lucky to have some great caregivers along the way. For years, being able to walk down or up the stairs was just a distant dream of mine.
Its quite possible we are all in just different phases of this illness. At certain phases more exertion, mental and physical is possible. A lot of the confusion comes form lack of research dessiminated to ME patients.
So Ive been through all ends of the spectrum with this illness. Just because you are not able to do much in the way of physical activity now does not mean you will not be able to in the future.
As a matter of fact, I know one day you will be able to do just as much as any healthy person. Dont give up, keep faith.
thanks flex but it's not just about exercise - thats how I think about life with M.E. - that was just a specific example - it's a life philosophy which is under constant revision/update
I understand your point of view as I've been there - in fact I've spent most of the last 25 years there - I've had long periods where I didnt have the resources to consider exercise of any sort - normally followed by brief interludes where I could so lets trya alittle gentle walking etc - and always come a cropper - but due to better pacing and pain control over the last couple of years I reached a point where I could (initially with some assistance) manage to up my game a bit - better food - a little more activity preparing it - a little more cleaning - that sort of thing - and after several months I found that activites which would normally crash me didnt - yes they'd make me feel unwell but not the crash I was used to - and I'd back off and rest
it's not a deliberate process - it's more a case of a realisation that life isnt as hard as it was last year - that I can now remember times when I am in pain rather than being unable to remember when I wasnt in constant pain - the I'm sick of this pain and it dawning on you that you cant think of a time in the last few months when havent been has gone - I can remember times when I wasnt in pain
from that I had the resources to consider a small amount of exercise - and it was litterally a few minutes at a time 3 times a week if i felt up to it at first - as I'd tried all the common types of exercise previously and they had had less than desirable outcomes and I'd heard a theory that strength trainign might be somethign to try - along with some apparently plausable reason why it might be ok I decided to give it a go - so far it's going ok - yes ther have been bad times - but nothing like as bad as other things I've tried
and I totally agree with your concern regarding peoples perceptions - but doesnt that say more about their false illnes beliefs than anythign else? it has given me concern what with being on IB with frequent medicals etc - but i decided that if I passed up a chance to improve my QOL simply because it might challenge the views of these sort of people wouldnt I be exactly the sort of person Wessley is on about - deliberately staying sick simply to get an extra few quid out of the taxpayer? so i decided to try it - what had I got to lose - the loss of a couple of years positive progress - several months on non functional misery - I'm USED to that - hell at this point I dont care if it kills me - I'm sick of living like this
so i decided to give it a try - I'm sorry if that offends anyone or causes anyone an issue with public perception of M.E.
so whilst it may not be (ok - definately isnt) for everyone I believe SOME people with M.E. may benefit
we are all at different stages and to be blunt I've had M.E. a while now - I know a lot about how to manage and manipulate my energy levels - I know the little tells my body and brain give off at various stages - I'm damn good at estimating drain in all but the most challenging/hostile situations - and i know the cost of getting it wrong and how to judge if it's worth it - so whilst I may not have your definition of M.E. I have mine
and I'm sorry for my tone above but I'm just trying to let you know how I felt and why I decided to take the risk - and I've noticed you arent shy about usng such emphasise yourself lol - I firmly believe that at your current state of health weightlifting would be bad for you
My honest opinion?
Don't do any.
Anyone who's been following my recovery will know I'm a total nut for charts and statistics - I track everything I eat, how many steps I take a day, every activity I do, supplement doses, etc. etc. I chart it all in Excell - and have been doing so for about 750 days - and note everything that affects my recovery/decline rate.
Before getting ill I'd been heavily into weight and endurance training. I've written about them a lot; been published in health & fitness magazines, etc. And I've OFTEN gone back to very cautious weight training when I've felt well.
Now the thing with CFS I've found of profound importance is to keep yourself on a trend of recovery. And for me, this has taken extreme care with pacing (as well as supplements and detox regimes).
Before I turned into a scientist about this, I'd have a LOT of ups and downs. I remember months where I could walk a mile. Where I was doing yoga. Where I was doing 15 pull-ups. But then I had just as many months where I was too physically exhausted to talk on the phone and would take 3 months to get over a mild cold...
YOU WILL NEVER GET WELL WHILE YOU'RE LETTING YOURSELF GO UP AND DOWN LIKE THAT. That proactive approach is the reason Type A personalities struggle with this condition so much.
You'll have good patches and bad patches, but in 5+ years of not pacing properly, of doing graded exercise whenever I could, etc. overall I'd gone backwards, and that was worrying.
Now I've been on a consistent path of recovery for almost 2 years - which means every setback, every nasty cold, stress, etc. while it's taken a toll, it's not affected my long-term trend of getting better (measured with a pedometer showing roughly how much energy I'm using each day).
If I keep on like this, there'll simply come a point where I don't have CFS anymore because I'll be walking 10,000+ steps a day and not having any symptoms. If I go back to weight training, graded exercise, etc. I'll just keep fluctuating forever.
(The key to pacing is to first reduce your activity to the point where you don't get ANY fatigue/symptoms. Keep it there for a while and really let your body decide when it wants to start doing a little more.)
I'm convinced CFS is a syndrome, not a disease, not an illness, I don't think XMRV is a cause at all, and I think the only real cure is REST - (helped along by removing whatever burdens/problems brought your health down in the first place).
Why no weight training?
Well, whether it tires you out or not, by breaking down muscle tissue and asking the body to repair (the only point of weight training) you're only adding to the overall damage in the system and asking the body to work harder repairing it. You're increasing your burden of free radical damage. You're also most likely depleting already depleted Glutamine and Branch-Chain Amino Acids.
Deplete Glutamine by training muscles: your over-stressed immune system gets weakened further.
I find I can make good progress with strength training for about 2-3 weeks, then mild symptoms will appear which stop me. I've actually made much more progress with fitness by NOT exercising than I did when I was.
I think you just have to accept that (for stubborn/persistent cases like mine) you have to aim to be a healthy, sedentary person first, THEN you can think about getting fit. Otherwise one will always work against the other.
Right now, after 2 years of solid recovery, I'm using a treadmill to walk 5-7 minutes when I feel like it. Yeah, 5 years ago I was much more unwell, and I was jogging and lifting weights. 5 years ago I'd struggle up the stairs on a bad day. Now I can run up stairs every day of the week without a second thought.
REST, REST, REST. Get yourself healthy at the cell level and you'll find yourself with the normal health and exercise capacity of a sedentary person.
(I do use sports supplements though. I take L-Glutamine 15g/day and BCAAs 10g/day, with about 2-3g vitamin C - split doses. Also high protein diet. I'd only do resistance training to maintain muscle tone unless you're 99% better and haven't relapsed in 2+ years.)
I actually put on about 5kgs on lean mass just taking Glutamine and BCAAs for a while. That was my body putting on muscle which it needed just to perform regular activities - walking, getting upstairs, etc. I think living is more than enough exercise for most of us, and if you're getting symptoms, it's probably too much.
JUST my take. And could probably be shortened to 2 paragraphs.
thanks Carter - thats good advice - I agree with almost everything you say in the preceeding post - I've also spent a lot of time studying how I react to various forms of activity/stimullous - amongst other things - I reached a different conclusion but in basic concept we agree - the trick is to maintain a true upward trend - by whatever means works
we dont agree on several issues but they should be obvious from my prior posts - it's remarkable how based on seemingly similar data we can arrive at a similar conceptual model which leads to such different conclusions (not just with regards to lifting) - I suspect your at the same point in your thinking I was a few years ago and the difference this makes isnt really surprising - or a bad thing as in the absense of an approach that works only by trying many different approaches can we hope to find the ones which do - but I strongly suspect that tinkering with suppliments, breathing. sunlamps and GET is unlikely to cure us anymore than it does other diseases - it may help alleviate symptoms but thats not the same thing at all - but then neither will lifting
it would be so nice if I was wrong tho
I've tried the REST REST REST method several years ago and it didnt work for me as I became so deconditioned I could hardly lift my head - possibly I should have tried rest rest only or possibly I wasnt fit/strong enough before M.E. for this to work for me?
I've looked into the mitochondrial angle myself and decided making more of them was easier (and cheaper) to accomplish than trying to fix a massively interdependant system with the resources at my disposal - I also dont believe that the problem is simply energy production - but if it works for you then I'm glad it does and hope it continues to do so
edit - just read the first few pages of your protocol thread - I've tried almost all of that with the exception of some of the suppliment protocols (which I couldnt afford anyway) - tbh I'm supprised you consider 700 steps a day as low activity - that used to be about my max (800) when I was having a really good day - it seems we may indeed mean different things by rest and may explain why rest rest rest causes me to become deconditioned?
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