Reintroducing exercise

[sming]

Hi,

at first I was going to ask about Graded Exercise Therapy but then found it roundly disapproved-of. Then I was going to ask about Pacing but Pacing seems related to lifestyle rather than just exercise.

What I'm after are the do's and don't's of reintroducing exercise "from cold" i.e. when you've completely quit exercise for some time. For example:

• does the CFS community generally recommend reintroducing exercise?
• how frequently should you start exercising initially?
• do you increase frequency of exercise or duration? or both?
• at what rate do you increase frequency/duration of exercise?
• are there any good exercise log/spreadsheet templates for tracking progress (or lack of)?

Many thanks,
Pete

p.s. I'm new to CFS, please be gentle ^_^

 

[Valentijn]

@sming - I wouldn't bother with structured exercise unless you're already able to easily do everything you need to do every day. If you're getting wiped out or crashing, then exercise is a really bad idea.

And in that case, I wouldn't worry about doing "graded" exercise. That's a treatment for psychosomatic patients who think that exercise makes them sick - not a problem I've seen evidence of in any ME patient. When we're healthier, we naturally do more, no elaborate plan needed. Just basic attention to symptoms and pacing to the new and improved threshold.

If you want to be more scientific about your pacing and activity in general, a heart rate monitor is a very useful tool for staying within your limits.

 

[xchocoholic]

Hi @sming

I agree with @Valentijn that if you're barely functional exercise probably isn't a good idea. Save your energy for daily activities.

I have pem today so I hope the rest of this will be clear.

I've been disabled with me/cfs since 1990, and from 1990 till when I began to treat my gluten intolerance / celiac in 2005, I was unable to use my abdominal muscles to sit up, raise my head off the bed, lift much without my shoulders going into spasm or walk any distance without feeling horrible. I rolled out of bed. These symptoms started with me/cfs onset in 1990.

By the end of 2006 I felt well enough to start an exercise regime to strengthen my muscles. I started out very slow due to deconditioning but made progress quickly.

After just a few weeks of doing sit ups I could sit up in bed. Head raises strengthened my neck enough so I could raise it from a laying position. I walk easily now. And my shoulders aren't going into spasm as easily. 2013 Quinolone damage is causing some shoulder issues but nothing like it was from 1990-2006.

I never managed to get any further due to pem and OI. But I NEEDED to re-build the muscles I'd lost.

Nowadays I walk 20-30 minutes as often as possible. I've recently realized that pushing myself to walk during pem will only make it worse.

Hth ... x

 

[Mij]

I need to rebuild muscle too but I no longer stress myself out over it. I do what I can without reaching PEM and take it from day to day. You have to figure out your boundaries and not got over, leave some extra energy in the tank and over time you may be fortunate to gradually build up energy and strength. That's been my experience but we are all different so you have to be very careful.

I went power walking last evening and didn't realize I went over my one hour limit because my stupid watch battery is dying, I went over by 15 minutes and didn't feel anything negative today. I'm thinking CoQ10 is helping. I'm happy about that.

 

[Gingergrrl]

I agree with @Valentijn and unless you are able to do all of your activities of daily living (ADL's) without problem I would not try to introduce exercise. In my case for a while I was totally home bound but now I am able to drive myself to most doctor's appts, pharmacy, bank, etc, and walking from the car to the appt and back IS my exercise b/c that is the level I am currently at. It is a vast improvement for me but if I tried to push it further right now, I would make myself very sick!

 

[sming]

thanks everyone for the advice. I totally get what people say about their "energy envelope" and the ramifications of staying within/outside of it.

If I continue to feel well-ish for another few weeks I might start doing a 5-minute run twice a week or something and see how that goes. I'll be keeping my expectations low and taking it slow...

Thanks again!

 

[Mij]

thanks everyone for the advice. I totally get what people say about their "energy envelope" and the ramifications of staying within/outside of it.

If I continue to feel well-ish for another few weeks I might start doing a 5-minute run twice a week or something and see how that goes. I'll be keeping my expectations low and taking it slow...

Thanks again!

I wouldn't bring your HR up with running! This will cause more oxidative stress and possibly permanent damage. I would start with low intensity aerobic (walking) to start. From my own personal experience wtth running (even for 5 minutes) is that it worsened my condition over time.

 

[Gingergrrl]

Again, I have to agree with @Mij that running is NOT advised for people with CFS (even those in a recovery or remission type state.) I think you should do aerobic or power walking and not push it beyond that level.

 

[SOC]

thanks everyone for the advice. I totally get what people say about their "energy envelope" and the ramifications of staying within/outside of it.

If I continue to feel well-ish for another few weeks I might start doing a 5-minute run twice a week or something and see how that goes. I'll be keeping my expectations low and taking it slow...

Thanks again!

As has already been said, if you are not managing all your activities of daily living, you should be increasing those before you waste energy on running, or even walking for the sake of walking. Function comes first.

ME/CFS specialists do not generally recommend starting with aerobic exercise when reintroducing exercise. They recommend starting with strength exercise in small amounts to build muscle without taxing the aerobic system. It's pretty clear that aerobic exercise is bad for PWME. You can read up on the research by Snell and Stevens, or Keller to understand more about this.

Running is certainly not advised as a starting point. Supine exercise is generally recommended to start. Exercise in very short segments (~2 minutes) is advised.

If you can run now without going over the estimated AT ((220-age)*0.6) listed below, you probably didn't have ME/CFS in the first place and none of these suggestions apply to you.

This might help:

The Klimas/Sol Exercise Program Connie Sol, Dr. Klimas’ exercise physiologist briefly went over the highlights of the exercise program used at the clinic. Noting that post-exertional malaise is also common in multiple sclerosis, Connie emphasized that understanding your personal aerobic and anerobic limits is very important and offered some general guidelines about how to do that.

Slow as You Go – first be patient. This ‘exercise’ program hardly resembles exercise as we know it. For instance it takes three months of very, very gentle exercise before you start to notice the benefits.

No ‘Burn’ No Nothing – Connie Sol’s exercise program requires that you not only don’t ‘feel the burn’ but that you don’t feel anything afterwards. In this very gentle nudging of your aerobic system you shouldn’t notice that you did anything afterwards. (Now that’s a gentle exercise program )

Exercise Laying Down or in a Gravity Reduced Environment Is Important - removing the burden of exercising and standing at the same time is very important. Doing pool exercises and yoga positions – which often occur seated or lying down as well – are recommended as well.

Watching Your Heart Rate During Exercise Is Critical – maintaining a heart rate during exercise that does not push you into your anerobic zone is critical. The Klimas Clinic uses sophisticated tools to determine exactly where your anerobic threshold is but here Connie provided a very basic method; 220 – your age x .60 ((220 – age) x.6 ). Heart rate monitors can be purchased rather cheaply online.

Take Frequent Breaks – Such as two minutes exercise (under your targeted heart rate) then two minutes rest; two minutes exercise/two minutes rest.

 

[xchocoholic]

I'd start by strengthening your muscles. I still can't run but I could barely walk for 16 1/2 years due to ataxia (brain damage) so I can't see that happening.

I was trying to point out that my body started to recover from my me/cfs ONLY after eliminating my food intolerances, esp gluten.
I'm a celiac and we're supposed to heal once we eliminate gluten.

If you check the web, you'll see others, non celiacs, who feel better by eliminating toxic food and chemicals tho. The paleo diet is common.

According to what I've seen you may or may not need further treatments. The dx of me/cfs is still ill defined. The NIH has stated that celiac is being misdiagnosed as cfs tho.

So, imho, before starting an exercise program you need to see improvements in your overall health.

Tc .. x

Ps. I didn't get an envelope with my me/cfs dx due to chronic OI.

 

[*GG*]

Listen to your body, do what you can WITHOUT major repercussions. I have always exercised with this illness, I was also working part time for the last 8 of 9 years. I did take one summer/year off from biking the year after a major crash in 2009.

GG

PS I am now exercising more often without major crashes, although I am not working now and have more time to sleep!

 

[BadBadBear]

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.

 

[Esther12]

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.

 

[alex3619]

I wouldn't bring your HR up with running! This will cause more oxidative stress and possibly permanent damage. I would start with low intensity aerobic (walking) to start. From my own personal experience wtth running (even for 5 minutes) is that it worsened my condition over time.

Five minutes of running two or three times a week induced a six month crash for me back in the early 90s.

The physiological evidence for strictly defined patients is that increased exercise load beyond our anaerobic threshold will induce a persistent energy crash. If we do too much then we find we can do much less for a long time.

 

[Mij]

@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.

 

[Sasha]

I'd agree on the caution being expressed here. Here's an extract from a post in response to this week's main article on Phoenix Rising's front page:

"Findings which suggest mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy in CFS patients led CFS expert Professor Paul Cheney to comment. ‘The most important thing about exercise is not to have patients do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’ Numerous heart, lung, brain and other abnormalities also show strong evidence that exercise can have extremely harmful effects on CFS patients in many different bodily systems, permanent damage may be caused, as well as disease progression." (Williams 2004, [online]).

"In CFS physical overexertion causes relapses of symptoms and continued physical overexertion can lead to disease progression - which may be irreversible." The Hummingbirds' Foundation for M.E.

"As well as long-term effects on disease progression, exertion can also have serious (and sometimes fatal) effects which are more immediate (cardiac complications for example)." The Hummingbirds' Foundation for M.E.

http://forums.phoenixrising.me/inde...nation-and-questions.32105/page-2#post-495576

 

[Mij]

Do we know at what rate we build new mitos with mild/ moderate walking or low impact exercise ie yoga (when we are well enough). Getting restorative sleep is also supposed to increase mitos.

My integrative doctor explained to me years ago exactly what @Sasha just posted. He told me that we do produce new mitos, "sister mitos", but they are not efficient as the mother mitos that were damaged. I don't recall exactly how he worded it.

If we protect the new mitos with COQ10 etc, can we rebuild over time enough to restore what we lost. I'm thinking we can because of my moderate improvment over the last 12yrs.

Genetics also play a role so some of us have a higher chance?

 

[adreno]

I stick to anaerobic exercises (resistance training) and walking. I tried gentle aerobic (exercise bike) for a while, but found that I just didn't improve my aerobic capacity, and I felt really wiped out afterwards, sometimes crashing.

It makes no sense to exercise if you don't improve, that's the whole point of it, to adapt to the physical stress. However, I do find that I can increase muscle strength with resistance training. Increased muscle strength will make your daily activities easier.

 

[lansbergen]

He told me that we do produce new mitos, "sister mitos", but they are not efficient as the mother mitos that were damaged. I don't recall exactly how he worded it.

I think you describe it well.

 

[sming]

As has already been said, if you are not managing all your activities of daily living, you should be increasing those before you waste energy on running, or even walking for the sake of walking. Function comes first.

makes sense. I've naturally headed in that direction already.

ME/CFS specialists do not generally recommend starting with aerobic exercise when reintroducing exercise. They recommend starting with strength exercise in small amounts to build muscle without taxing the aerobic system. It's pretty clear that aerobic exercise is bad for PWME. You can read up on the research by Snell and Stevens, or Keller to understand more about this.

bummer, I love football (soccer)

If you can run now without going over the estimated AT ((220-age)*0.6) listed below, you probably didn't have ME/CFS in the first place and none of these suggestions apply to you.

This might help:

Excellent, thanks. I've always felt horrible when doing any aerobic exercise but had previously assumed it to be a manifestation of my IBS. Shame I'm only finding out now that all that exercise was actually making me worse :/