High Intensity Training (HIT) and Body By Science

[koco]

Thanks for reaching out with your experience, olliec. I've been awfully conflicted about working out, particularly in the last couple years since the symptoms of my illness have seemed to intensify. Striking the balance between conditioning and deconditioning seems to be the ticket. I've found that if I allow myself to "take it easy" I encounter certain benefits, but to the detriment of others. I feel very lazy for currently having the goal of weight training three times per week - but I just can't handle more than that right now. I'm definitely going to spend some time investigating the resources mentioned in this thread.

Re Yoga: The benefits of yoga go beyond physiology. At best, it's also a meditative practice which trains the mind to regard the letting go of struggle as a natural state. Surrendering to whatever state the body is in is part of healing. It's not giving up. Rather, if we can let go of the urge to fight and insist that things should be different than they are, then we are better able to find the right path to discover whatever we truly need at any given moment.

Re Naltrexone supply issue: I use Skip's (compounding) pharmacy in Boca Raton, FL. They will ship your Naltrexone by mail. http://www.skipspharmacy.com/

 

[SOC]

@olliec, do you watch your HR when you exercise? I'm thinking the muscle burning (lactic acid production) and panting suggest you are trying to exercise aerobic and anaerobic glycolysis systems, which may not be as effective as working the AT-CP phosphogen system, and may actually be harmful. If your HR is going over your AT, that is not good (for a PWME). HR climbing rapidly is probably not good, either.

 

[olliec]

@koco I agree about the other benefits of yoga. I didn't take to it, but I know many do. I meditate sporadically. I've also found I need to get a balance between rest and activities to avoid deconditioning. I went too far towards rent and lost so much strength I was wobbly more like a frail 90yr man. I remind myself though that there's a continuum between not doing anywhere (where actually we are, even if visiting bathroom, just sitting up or rolling over etc) and doing formal "exercise". In the absence of much information about what the hell this disease is we're all shooting in the dark to some degree about what's good or bad.

@SOC I actually don't pay much attention to my heart rate as I'm focused on steadily and safely reaching muscle failure which takes everything I have, but after these workouts my heart is making a solid attempt to leap out of my chest so I would expect it to be north of 120bpm. I am not sure where my AT is, though probably around there somewhere and I do wonder if the exercise has moved my AT up. Getting my heart rate that high earlier this summer would have been more likely to cause PEM than now I think. I can only guess that for me letting it go that high is proving to be manageable because it is only for a brief period, but I really am guessing.

As I reach muscle failure my whole body goes into panic (a normal biological reaction apparently) as it fights to keep applying force despite reaching my limit, my limbs are shaking, I often cry out in pain, I then collapse on the floor or into a chair and pant uncontrollably for several minutes while my muscles burn (I think my body is using the oxygen to aerobically metabolise the excess lactic acid?). As I understand it reaching that (profoundly uncomfortable) point is what is so effective at triggering my body to adapt - in terms of muscle mass, strength and metabolic efficiency.

I'm sure what I'm doing is utterly inappropriate and potentially even dangerous for many of my fellow patients. I cannot explain how this is possible for me. If you'd told me as recently as July I'd be doing these exercises, that I'd lose 5kg of fat and get noticeably stronger I'd have thought the suggestion ludicrous. Having said that I'm walking a tightrope and my goal now is to get the duration as low as possible whilst still reaching muscle failure to reduce the risks of cumulative PEM. McGuff seems to be saying fitness training is broadly anti-inflammatory over the longer term so I'm itching to see if that is visible in anyway way.

 

[SOC]

As I reach muscle failure my whole body goes into panic (a normal biological reaction apparently) as it fights to keep applying force despite reaching my limit, my limbs are shaking, I often cry out in pain, I then collapse on the floor or into a chair and pant uncontrollably for several minutes while my muscles burn (I think my body is using the oxygen to aerobically metabolise the excess lactic acid?).

And you really think this is good for you?

If you'd told me as recently as July I'd be doing these exercises, that I'd lose 5kg of fat and get noticeably stronger I'd have thought the suggestion ludicrous.

I've lost far more than 5 kg and I'm noticeably stronger, too, but it didn't require driving my body into panic mode, collapsing and crying out in pain. Perhaps there's a less damaging way to achieve your goals...?

 

[olliec]

@SOC Honestly I don't know For a healthy person doing that to myself would be fine, just the natural result of a hard workout. For me as a sick person it's obviously far more risky, but my working theory is it is ok as long as the duration is very low. So far the lack of a full relapse suggests I'm right, but time will tell how sustainable it is. If I do not challenge my muscles to some degree I haven't seen much improvement, but I may well have to tweak it. At the moment I am specifically following the Body by Science approach and that does require exercising to momentary muscular failure.

Well done for finding a way to gain some strength and lose some weight despite the incredible limitations this illness puts on so many of us.

 

[SOC]

For a healthy person doing that to myself would be fine, just the natural result of a hard workout.

I don't buy that. I was a gymnast back in the day and we worked out hard, but our coach never wanted us to work out to the point of physical panic, collapse, and tears of pain. Hard, yes, pushing your body to the point where it's screaming at you that you've gone way, way too far, no.

Self-appointed gurus are not always good people to follow without question. They're not the ones paying the price when their strange theories fail and you are harmed. You are the only one who suffers. In any case, my guess is that if you asked McGuff if he would advise a seriously ill person to follow this program, he would say no.

Of course it's entirely up to you if you want to continue pushing your body in this way. While I hope that whatever you choose to do improves your condition, I wanted to make sure you stepped back a moment and looked carefully at what you're doing and the possible consequences. It's easy to get enthusiastic about something and get carried away, forgetting to look at the long term. If you've given all this careful thought and are choosing to go forward anyway, then I have nothing more to say other than, "Best of luck to you".

 

[olliec]

@SOC I completely agree about any self-appointed guru and I'm cautious with them too - I've had my fingers burnt in the past, in other areas. When I describe how I feel after a workout it is perhaps not as dire as it's come across. The "panic" I'm referring to is the physical anxiety that naturally comes with taking muscles to the point of failure - it is uncomfortable and requires some discipline to keep doing the movement even when the muscles are shaking and sore. I am hopefully my risk of injury is very low as the movements are all very simple and pretty slow. Dr McGuff goes to great lengths to tell people to not workout at all if they are ill, so in that respect I'm ignoring him completely, but if I never worked out ill I'd never work out at all. When I started this I was doing 1min per week, and have slowly built it up, guided by my symptom severity. I do have days where (eg I've slept worse than usual) and I ease off. So far it's worked, but hindsight is the only way I'll know if it is sustainable. If I see any good reason to or nee to I will increase the rest period between exercise days - I think that will happen at some point. I need to know if this can work for me, so I will press on but I am very aware that it may fail. I appreciate your concern, it is kind of you to remind me to consider my welfare - you are absolutely right.

 

[koco]

Olliec, I certainly empathize with your conflict. At the most intense, I trained 7 - 8 times per week, following routines I learned from a female body builder. I was in such shape whereas if I had introduced dietary restrictions in addition, I could have competed in a figure competition (at least that was what I had been told by those in the know). I spoke in my earlier entry about surrender. I've experienced a great deal of fear in terms of losing some control of my body. I don't allow my muscles to burn out now because I simply can no longer withstand the recovery necessary. When you said you sometimes felt like a 90 year old man, I totally know what you mean. These days if I work out more than three times per week, I too feel like an old lady who can barely move without groaning and moaning to accompany the effort. Therefore, I've decided to work out more like an old lady. I use just enough weight to give me resistance and effort, but not so much that I'm feeling a burn. Sometimes, I'll just stand in the pool and kick my legs in different directions (like old folks water aerobics). I'm still learning to accept that this discipline shall have to suffice. This disease is certainly forcing me to understand the futility of force.

Olliec, I was wondering if you could recall your experience with naltrexone. I've only been taking it since July and my doctor has me increasing my dose by 0.1mg per week. At present, I take 1.6mg per day. How long did it take before you noticed a difference? How strong was the difference? What aspects of your symptoms improved by taking naltrexone? Many thanks.

 

[olliec]

Hi @koco I liken managing this illness to riding a bike along a cliff edge whilst blind-folded. We're all fumbling around in the dark trying to find some sort of balance between activity and rest, but for a lot of us we don't find out we've got it wrong until we get really deconditioned (which led to me buying a wheelchair) or relapsed with PEM because we over-did it. In between the too is the day-to-day misery of the unavoidable core symptoms we can do nothing about.

I am thrilled to have discovered Body by Science because (assuming it's not all bollocks) it allows me to focus on very short-duration exercises that (for me, at this point, at least) cause almost no cumulative PEM, but that are triggering my body to adapt (stronger, little more muscle mass, possibly cell metabolic efficiency). I'm relatively optimistic that having done it for three months without relapsing, I have a shot at continuing on a longer-term basis. Though my goal now is to get the duration down, with all my focus on calmly, steadily and carefully reaching muscle failure, to trigger those adaptions, whilst making sure I am recovering to a manageable baseline.

I completely get what you're saying and must do what is right for you. I am very much aware that this (extremely surprising and inexplicably) situation I'm in where tiny bursts of very intense exercise is possible for me may be something that is temporary, or being allowed by some diet or treatment regime I'm doing or maybe just an evolution of the illness. I do not wish to suggest anyone else start doing what I'm doing, my goal was to share my experience and see if anyone could help me understand how this is possible. I'd not have believed it myself even recently.

When I started taking Naltrexone I think I started on 0.5-1mg a day, something of that order. I started to notice I felt less sick after a few days, but was hesitant to reach any conclusions so quickly. But over time (as I worked up to 4mg daily) I became fairly confident that it was helping. Specifically for me it reduced the "malaise" type of symptoms, so I found I'd tell people less often "I feel so shitty right now". I can only guess (and it really is a guess) that the LDN is reducing inflammation. As an aside I am asthmatic, and my asthma is worse lately now I'm taking LDN on a 1/4 dose (as supplies v low) - I have seen comments online suggesting asthma symptoms can be helped by Naltrexone. Until this stupid illness is better understood we're all shooting in the dark and we may all respond differently. Fingers crossed it works for you. I've found it to be a useful part of my treatment arsenal alongside doing everything I can to sleep well, and eating a low-carb, high-veg, fairly high fat diet of fresh foods. I do remember I had one deeply unpleasant symptom when I first started with LDN, and that was headaches the likes of which I never believed were possible and that went on for days, I guess they were probably migraines. I never had them before LDN. I do occasionally get them now, but not as bad as the early days, and only very rarely when I get generally sicker (I treat fairly successfully with paracetamol). Maybe an unlucky correlation.

 

[koco]

Olliec, I'm glad you're finding success with Body by Science. I pray you continue to gain strength.

Thanks for the feedback about your experience with Naltrexone. Once I was up to about 1mg, I noticed that I also felt marginally better. (As we know, marginally better is a relatively huge improvement as far as this disease goes!) I noticed the slight improvement because for the week prior to my follow up appointment with Dr. Vera at the Institute for Immune Medicine at NSU (Nancy Klimas' facility), the doctor had asked me to track my blood pressure on waking, ten minutes after waking, and at any "crash" period. I noticed that I had only ONE crash period that week! But then that weekend I contracted a cold which triggered my asthma. I had to take a course of oral steroids and am still recovering. The whole episode seemed to set back whatever fleeting, relative, wellness I had experienced. I'm hoping that once I've accumulated a higher dose I'll begin to feel some relief.

Apologies for digressing from the original intention of your thread. I do appreciate the info and I also appreciate the emotional validation regards the frustration of maintaining fitness with this disease.

 

[rebar]

Thanks for posting olliec, for years I've tried very light exercise and it always fails, like you I'm basically house bound and only get out a few times a week. I've been doing a few things that have helped a little, one is paying strict attention to energy output. I started doing a little yoga and have limited myself to 3 poses. Very short duration and focused on breathing.

So today I tried HIT, first one 10 sec. squat, later in the day I tried one 10 sec. pushup. I was most surprised by the
stress and degree of effort required. That will be it for now, maybe friday I'll attempt two different exercises.

Something I noticed about 10 min. after the 10 sec. squat, and also after the 10 sec. push up. is the exercised area felt good. In the past I've severely crashed with most any exertion, although I've able to do short infrequent things like bringing in the groceries, or lifting heavy objects.

Post like yours are why I pay attention to P.R.