Reintroducing exercise

[sming]

yes I've tried eliminating gluten (and pretty much everything else too via the exclusion diet) to no avail. FODMAP did nothing for me either.

 

[sming]

I agree about running being a dubious plan to start out... I managed to keep walking some through the worst of my illness. Even so, building up has been a sloooow progression of increased walking (for a year, I was really slow the first year and did not go very far) and now eventually I can walk daily and do a bit of bicycling at low heart rates - building up ever so carefully. Going slow sucks - I think that EVERY DAY that I exercise because I was always fit before - but going slow is better than repeatedly crashing or crashing for weeks at a time. Think of it as building up and not tearing yourself down. You need to build up your poor tired mitochondria, treat them gently. Be a slave to your heart rate monitor, figure out your AT and stay under it. Rest a lot, and plan for rest days. Rest more than you think you need to.

Like GG, I am not working and I am able to sleep as needed during the day, which is a requirement for me on exercise days. I do sometimes skimp on the ADL's at times to be able to exercise, it's a matter of sanity and I do have a supportive spouse.

Just be really careful, go much slower than you think you need to.

great post, thanks so much! Yes for some time now I've been taking 1-2 naps a day on work days. In the Summer I nap on park benches and in the Winter I nap at a nearby gym! I'll have to look up AT and ADL now ^_^

 

[sming]

I'd be a bit wary with running too, even for short periods. Maybe that's something to move on to if you've found that other forms of exercise work out okay for you? To some extent though, I think that you are likely to know what you feel up to better than us, and it could be that you're already doing the things that others would count as lighter forms of exercise. Good luck with it all.

sounds like a plan. I might just start with a few low-rep sets at the gym. Before that though I really need to establish a baseline for my health so that I can know for sure when exercise is negatively affecting me.

 

[sming]

@alex3619 absolutely, this is what I was doing in the late 90's and early 2000. Even though I've improved over the years, the damage is done. I can tell I will never get that back.

well if the damage is done with me then I am f*cked since I've exercised through the fatigue, weakness and PEM for nearly 20 years. Gulp.

 

[Mij]

well if the damage is done with me then I am f*cked since I've exercised through the fatigue, weakness and PEM for nearly 20 years. Gulp.

Sorry, but yes. What you can do now though is protect the new mitos from oxidative damage by taking anti-oxidants, particularly CoQ10. No more aerobic exercise.

 

[sming]

Sorry, but yes. What you can do now though is protect the new mitos from oxidative damage by taking anti-oxidants, particularly CoQ10. No more aerobic exercise.

thanks for the tip.

 

[Esther12]

I think everyone's different, and likely to find different things beneficial, so people are best off playing about and seeing what works for them. It's probably best to do things gradually, but also, the amount people can do on different days can just really vary.

 

[Sasha]

well if the damage is done with me then I am f*cked since I've exercised through the fatigue, weakness and PEM for nearly 20 years. Gulp.

On the plus side, if you've managed to do that (something that many of us have too low of an activity threshold to do) then quite possibly you're functioning at a level where you can start pacing yourself and banking some of your energy for some chance of recovery rather than spending it all on basic self-care.

You can only start from where you are now. Please don't beat yourself up!

 

[BadBadBear]

well if the damage is done with me then I am f*cked since I've exercised through the fatigue, weakness and PEM for nearly 20 years. Gulp.

I have a friend who has had fibro & CFS for years - she used to bike a lot before she was too sick. I asked her recently if she thought it contributed to her health decline, and she said she thinks she would have gotten sick much earlier if she had not been trying to bike for as long as she could.

That line of thinking definitely inspires me to keep trying to move while I still can, esp. since I seem to be able to build up very slowly now that my meds seem to be adjusted right for me. It's a difficult balance to find - to do all that you can and yet still get the rest that you need.

 

[SOC]

I have a friend who has had fibro & CFS for years - she used to bike a lot before she was too sick. I asked her recently if she thought it contributed to her health decline, and she said she thinks she would have gotten sick much earlier if she had not been trying to bike for as long as she could.

That line of thinking definitely inspires me to keep trying to move while I still can, esp. since I seem to be able to build up very slowly now that my meds seem to be adjusted right for me. It's a difficult balance to find - to do all that you can and yet still get the rest that you need.

The real trick, imo, is to stay as active as possible while still staying well under your AT for routine activities, and near your measured AT only briefly for more strenuous activity. It is impossible for some PWME to stay under their AT during normal activities of daily living. Exercise for the sake of exercise seems foolish under those circumstances, although the most basic mobility maintenance activities (range of motion, stretching) are probably valuable for the bedbound, if possible without going over the AT.

My sense is "appropriate exercise" is highly dependent on the level of functioning. Those who are working full-time are probably able to walk or bike for the sake of exercise. Those who are bedbound and housebound probably get as much "exercise" as their bodies can tolerate just getting through the day. To encourage all PWME to exercise or increase activity ignores the reality of the variations in the illness. Too many mild patients, who don't realize the degree of disability of moderate-severe patients, insist that exercise for the sake of exercise is valuable for ME because it worked for them. The same is true of some fibro-only patients who have been told they have "CFS". These people don't understand how much more physically capable their bodies are than those of a large portion of the ME population.

We need some kind of objective measure to know whether our activity/exercise is harmful or helpful. AT monitoring is probably the best we have at the moment.

For quite a few years I was unable to walk across the room without going over my AT. I was at 95+% of my AT just sitting in a chair. A nice little walk around the block would have been foolish under those circumstances. Now that I'm better, I can be on my feet around the house a lot more. I can take a shower without going over my AT. I can walk up a flight of stairs without going over my AT. I can walk from my house to the garage without going over my AT. None of this happened because I exercised. It's the result of pacing to stay below my AT, lots of rest, and appropriate medical treatment for pathogens and OI. I increase my activity as my condition improves, not the other way around.

I still can't walk 100yds or so without PEMing myself, so I can't shop without a cart or wheelchair. I can't go for a walk around the block. However, now that I can shower, cook, and do light cleaning without going over my AT, I can afford to do the kind of exercise Connie Sol at INIM as recommended for me -- supine exercises with light weights, about 6 different exercises at about 6 reps. No more than 4-5 mins at a time, none of it aerobic. This is the reality of "exercise" for the moderate-severe patient.

 

[~Tatty~]

running! ... will cause more oxidative stress and possibly permanent damage. .. my own personal experience wtth running (even for 5 minutes) is that it worsened my condition over time.

Whereas for me, running has always made me feel better: invigorated, stronger, more alive. My head is clearer and the fog lifts. I don't run far, only for about 10 mins at a gentle jogging speed.

Walking, perversely, makes my pain much worse, so apart from walking the dogs I cycle (when I'm not using the car). The bike takes the weight off my feet, literally, and it can carry all my bags/groceries etc. Without doubt, the car makes life easier, but I need to exercise the dogs, and myself.
On my worst days I cut back on the chores, not on exercise (which at the moment is 20-30 mins dog walking daily. No running due to lack of time).

 

[Valentijn]

Whereas for me, running has always made me feel better: invigorated, stronger, more alive. My head is clearer and the fog lifts. I don't run far, only for about 10 mins at a gentle jogging speed.

Hence you don't have ME/CFS, so what works for you is quite inapplicable to us. Have you been checked for orthostatic intolerance? It can cause "fatigue", especially when standing still or moving slowly, whereas vigorous activity can help compensate somewhat.

 

[~Tatty~]

Hence you don't have ME/CFS

Sorry, do I know you? How can you possibly make that statement, knowing absolutely nothing about me?

For some reason Valentijn, you've decided to follow my every post, and challenge every single one. I feel unwelcome, on a forum that I had erroneously thought to be friendly & supportive.

 

[Valentijn]

Sorry, do I know you? How can you possibly make that statement, knowing absolutely nothing about me?

For some reason Valentijn, you've decided to follow my every post, and challenge every single one. I feel unwelcome, on a forum that I had erroneously thought to be friendly & supportive.

You said yourself in your profile that you don't have ME or CFS, and you said in the quoted post that exercise makes you feel better. Whereas our abnormal reaction to exercising is a pretty defining characteristic, as it's known for making ME patients feel much worse.

ME/CFS is not chronic fatigue.

And while we are generally friendly and supportive, even with non ME/CFS patients here to talk about specific topics, it is still an ME/CFS forum. Hence talking about how much better exercise makes you feel is inapplicable to the ME/CFS patients here, and potentially dangerous if a new ME/CFS patient reads your posts and thinks "gosh, I should be trying to run instead of trying to walk!"

 

[SOC]

Sorry, do I know you? How can you possibly make that statement, knowing absolutely nothing about me?

For some reason Valentijn, you've decided to follow my every post, and challenge every single one. I feel unwelcome, on a forum that I had erroneously thought to be friendly & supportive.

Whereas for me, running has always made me feel better: invigorated, stronger, more alive. My head is clearer and the fog lifts.

By definition what you've said eliminates an ME/CFS diagnosis. PEM/PENE is a required symptom
From Myalgic encephalomyelitis: International Consensus Criteria:

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

You can produce sufficient energy on demand for activities far beyond minimal activities of daily living. You don't have rapid fatiguability with response to exertion. Contrary to the definition, you have an improvement in symptoms with exercise, not an exacerbation. You don't have a prolonged recovery period -- or even a recovery period at all -- you get better with exercise.

@Valentijn made a kind, and probably beneficial suggestion to you. Orthostatic intolerance is sometimes mistaken for ME/CFS, but unlike ME/CFS there are standard treatments which could greatly improve your quality of life. Why would you not want that? I'll bet any ME/CFS patient would be thrilled to find out they had a relatively easily treated condition rather than ME/CFS.

Val is not attacking you. She may be giving you a clue towards a much better life. That is not a bad thing.

 

[Alea Ishikawa]

A presentation on 2-day CPET study (perhaps linked by Valentijn? I forget where I saw this):
Effective Management of Activity Intolerance - Staci R. Stevens, MA

Also: Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity
Busted! Exercise Study Finds Energy Production System is Broken in Chronic Fatigue Syndrome
Extraordinary high lactate threshold means legendary fitness status


Basically, they found the main (aerobic) energy system in the body was broken in ME/CFS patients. We reach our anaerobic threshold earlier. On the test, we do worse than sedentary controls and those with heart/lung diseases.

A normal person would actually be able to increase their ability, including their protection against oxidative stress, with moderate exercise over time. In contrast, a PWC scored 19% worse on the test after walking for a year.

Stevens recommended we do exercise in short, 30-second spurts and rest thereafter - possibly for several days. She also mentioned using a heart monitor for pacing. You could use Excel or OpenOffice to track your days, exercise, and time. If you know your threshold and how exercise affects you, then you can plan on exercising below that threshold and then increasing over time, if able.

I also second the notion: you have to decide where to place your energy.

 

[Adlyfrost]

I find walking to be very beneficial when restarting physical activity. Outdoor walking on flat ground in the shade in moderate weather I tolerate best. I let my feelings be my guide to how long. If indoors I start with 5 minutes/day on treadmill at 2 miles per hour. If I am detoxing sometimes I have to skip days when my symptoms are exhausting.

I just moved from FL to NJ- warning: in my experience, BAD idea to walk or exercise in cold weather. Depletes all my resources suddenly. Esp for women who do not have the muscle reserves to warm themselves like men. Crashed many times from walking dogs in cold. This winter leaving that task to my wonderful fiancé.

 

[Tired of being sick]

The only exercise that can be tolerated by CFS/ME patients is pacing or walking..
And I mean just regular normal walking of said patients tolerance..

If the sun is out and it is hot and humid,we the patients can not even be in the sun let alone pacing or walking..

Just me stepping outside in the hot sun, my heart rate will rise to as high as 140!

As long as our limbs and brain are not getting an adequate amount of blood supply it will be impossible for any of our limbs to gain strength from exercise..

Find a way to get the normal amount of blood supply to our limbs and then and only then will we gain strength from exercise..
Yes I am describing POTS but POTS is just one cluster of symptoms found in ME..

However POTS on its own can be just as disabling as ME when it comes to limb weakness fatigue, and exercise intolerance.....

This is just my opinion from my own experiences of course..

 

[Adlyfrost]

Same experience in the sun @Tired of being sick, esp. in FL when the sun angle was very direct. Crashed every time after being in the sun. Had to become a hermit for many years in FL. Couldn't even take my daughter to school because sun coming into car windows paralyzed me.