Exercise

[soulfeast]

Is there a way to do this without crashing? From what I am reading, gradient exercise therapy often results in crashes. I want to and have started taking short walks almost daily.

I do feel my muscles are sore and need leg massages by end of day to help me recover. My muscles seem to breath ok while I walk but afterwards, they just fo not recover like they used pre CFS when I walked long distances often.

Hoping there can be a balance with being able to walk again to some extent and not crashing.

Thanks for any input.

 

[ukxmrv]

Some people are using heart rate monitors to try and exercise within their limits. Dr Klimas has been working with her patients on this and you should find threads here plus a video.

I've not been able to get over that core ME symptom of post exertional problems but other may be able to give you some tips of what helped them.

 

[Little Bluestem]

One thing that helped me was walking more slowly. I could walk farther without post-exertional exhaustion that way. People talk a lot about pacing in terms of resting frequently between periods of activity. I have found that I also need to pace myself by moving more slowly during the periods of activity. There is a limit to how much gain this will get you, though.

 

[charityfundraiser]

Test and experiment continually, within walking and outside of walking. Shorter walks, walking more slowly, avoiding hills, taking mini breaks during a walk, walking every other day, etc.

I tried walking daily for a few years and my distance/time barely budged. Then I tried stretching, tai chi, yoga, pilates, orthopedic massage, etc. and found they helped more and faster, indirectly increasing my walking ability. I found they all have different effects so I try whatever I can and keep doing the ones that produce a positive trend.

In short, in my case, walking did not help my walking, but non-walking exercises helped my walking (and basically my CFS is going away).

 

[alex3619]

Look up threads on this forum that mention Pacific Labs and you will get a lot more information about this - it has been extensively discussed. In essence aerobic exercise is bad because once we shift to aerobic metabolism we are doing harm. Only mild patients who are tending toward recovery can handle much in the way of aerobic exercise, and they need to be careful. As a rule of thumb patients are given a target heart rate, and unlike the general population we are not told to stay over this rate, but to stay under it. Sometimes that target heart rate is very low too.

 

[Seven7]

I got test done. Keep HR under 115 (my top number). I wear a HRM all day and try to keep under 115 all times. Exercise one day on if my Resting HR is under 8% of my regular RHR, one day off. Do 3 segments of 5 min on 5min off. Try to focus on legs and Core due to POTs. I do better laying down, I am not ready for standing exercise. Right now I do pilates, some days weights for legs and arms. My recovery resting HR when I do weights is longer, 2 to 3 days (RHR to go back down from the 8%). When I stop exercising my recovery stops as well.

I was asked if one loose ground, the answer is yes. I can be doing the 5min w/o much work, go crazy and crash and I have to start over to build strength. The point is go slower and steady and avoid crash. You will gain more this way.

7

 

[xrunner]

IMy muscles seem to breath ok while I walk but afterwards, they just fo not recover like they used pre CFS when I walked long distances often.

Hoping there can be a balance with being able to walk again to some extent and not crashing.

Thanks for any input.

Long walks shift your metabolism into aerobic mode. This is not recommended in CFS. If you stick to anaerobic exercise you can gain the benefits without crashing. Over time this will also improve your aerobic threshold and should help with walking as well.
You always need to start with little and increase gradually, if your body says so.
In my experience, in order to benefit from exercise, your body needs to have reached a certain stage of recovery where it feels right to exercise. It's something you feel inside. Otherwise any kind of exercise will not be helpful, in my opinion.

You can find a reference to aerobic vs. anaerobic in the CFS primer for doctors doc, recently posted in another thread.
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

 

[SOC]

I got test done. Keep HR under 115 (my top number). I wear a HRM all day and try to keep under 115 all times. Exercise one day on if my Resting HR is under 8% of my regular RHR, one day off. Do 3 segments of 5 min on 5min off. Try to focus on legs and Core due to POTs. I do better laying down, I am not ready for standing exercise. Right now I do pilates, some days weights for legs and arms. My recovery resting HR when I do weights is longer, 2 to 3 days (RHR to go back down from the 8%). When I stop exercising my recovery stops as well.

I was asked if one loose ground, the answer is yes. I can be doing the 5min w/o much work, go crazy and crash and I have to start over to build strength. The point is go slower and steady and avoid crash. You will gain more this way.

7

I think I missed this part of my meeting with Connie due to the onset of food poisoning towards the end of my appointment. Would you clarify your above description just a bit for me? Am I correct that you can exercise every other day as long as your 1st morning RHR is more than 8% below your average RHR (92% of your RHR)? It takes 2-3 days for your 1st morning RHR to get back to 8% below your average 1st morning RHR if you use weights?

Thanks for your help.

 

[Seven7]

The Consultation w Connie is extra.
Example my regular RHR now is 82. I exercise today. The day after tomorrow I exercise if RHR is 82+(82*8%) <= 89
If my HR is over 89 I cannot exercise, I wait until is under that again. If I use weights, it will stay over 89 for at least 2 days. I go back when RHR goes back down.

Now my RHR changes a lot, specially if I overdo I loose ground. So every now and then I have to choose a new target RHR and use it as base. For example, before this crash RHR was 77. I have been on 82 for a few days now. So I guess that is my new RHR because I have waited for 2 weeks w no exercise (I had visitors) and I cannot go back down to 77. So I today exercise and will use 82 instead of 77 for the day after tomorrow as my RHR to add the 8%.
I hope this makes sense.

7

 

[Esther12]

Then I tried stretching, tai chi, yoga, pilates, orthopedic massage, etc. and found they helped more and faster, indirectly increasing my walking ability. I found they all have different effects so I try whatever I can and keep doing the ones that produce a positive trend.

In short, in my case, walking did not help my walking, but non-walking exercises helped my walking (and basically my CFS is going away).

I think I've found pilates to be a more useful form of exercise than anything else. It's hard to know though, and for me, it hasn't led to any virtuous cycle - which is what I was hoping for when I started putting my energy towards that and it seemed to lead to some improvement.

Pilates is meant to be good for core muscle strength, and I've heard the this is a sensible priority for those who are not able to do much exercise/activity. I really don't know how true that is though.

I'd encourage people to play about and find what works best for them as an individual, as I'm not sure how helpful or good much of the research in this area is.

 

[SOC]

The Consultation w Connie is extra.
Example my regular RHR now is 82. I exercise today. The day after tomorrow I exercise if RHR is 82+(82*8%) <= 89
If my HR is over 89 I cannot exercise, I wait until is under that again. If I use weights, it will stay over 89 for at least 2 days. I go back when RHR goes back down.

Now my RHR changes a lot, specially if I overdo I loose ground. So every now and then I have to choose a new target RHR and use it as base. For example, before this crash RHR was 77. I have been on 82 for a few days now. So I guess that is my new RHR because I have waited for 2 weeks w no exercise (I had visitors) and I cannot go back down to 77. So I today exercise and will use 82 instead of 77 for the day after tomorrow as my RHR to add the 8%.
I hope this makes sense.

7

Thanks, 7. I thought I did pay for a consultation with Connie, but maybe not. I'll have to check with the office.

How do you know what your "regular" RHR is? My RHR has varied from 76-94 bpm over the past 2 months. The average is 86bpm, but the mode (most common) is 88bpm.

I think I get your program, now. If 88bpm is my "regular" RHR, then I would exercise every other day if my RHR < 88*(1.08)=95bpm, right?

 

[Seven7]

Correct. I consider regular once it stays in that number for a few days (I made it based on my experience). Hey, I am still playing with this so not sure I have it right but the 8% did came from Connie. Next time I will ask her how to deal w the HR variability.

 

[SOC]

Correct. I consider regular once it stays in that number for a few days (I made it based on my experience). Hey, I am still playing with this so not sure I have it right but the 8% did came from Connie. Next time I will ask her how to deal w the HR variability.

Thanks so much for your help, 7!

 

[waiting]

soulfeast, as a follow-up to alex3619's post, you might find this video helpful. It's of Staci Stevens (Founding Executive Director, Pacific Fatigue Lab) speaking at the IACFS/ME conference in Ottawa last September. The video's about 20 minutes or so and she describes what happened to an ME patient who, on their own, instituted a daily walking program. It's very instructive.

 

[soulfeast]

Thank you all for responding. I am trying to read all the linked material, but need to check in with my comprehension. It takes time for me to assimilate new info.

I am on a beta blocker for POTS.. 10mg bystolic keeps me in 70s for heart rate generally when sitting. For what this is worth.

Am I getting this right?

(1) anerobic is better than aerobic

(2) exercise over 90 seconds puts one in anerobic state

(3) exercise lying down or recumbant is best

(4) if exercising longer than 90 seconds, keep pulse rate at 55% of target (is 55% where you work up from, if there will be any ability to work up or the goal?)

(5) if using weights, if pulse rate goes above 55% of target rate, then stop or stop when feel burning or both?

Before kids 15 years ago and obviously pre CFS, I loved to lift weights, treadmill, stairclimber, bike, etc.. never could run though... would have flu like symptoms (minor that passed in a day) if worked out too hard. Spent hours at a time in the gym. So working out hard was really pushing it. Even "lifting" water bottles, this urge comes over me to push. I'm starting to worry about not moving and noticing sorry to say there is some emotional panic around crashing from moving or exercise (not to add support to the exercise phobia theory.. which I know is ridiculous.. and the panic is from not only continuous crashing but also unpredictable crashing) happening over and over again). I noticed it today when debating whether to take a short walk... sheer panic over the thought I might crash

 

[alex3619]

Hi soulfest, your points are accurate enough but they are only approximate. Ultimately the issue is how you respond. If you are getting worse you are doing too much. The stevens video in post 14 I have seen before, it is well worth watching.

You will note that Staci Stevens recommends 30s rather than 90s if you are doing anything even a little intense. She even trains elite athletes this way - so these techniques work, the duration of only 30s just rules out aerobic exercise as its commonly understood.

Bye, Alex

 

[mellster]

http://www.pponline.co.uk/encyc/sports-injuries-overcoming-chronic-fatigue-syndrome-41931
I found this a fairly well-written and balanced article about CFS and exercise (although you have to be well enough to at least be able to exercise for short bouts). cheers

 

[taniaaust1]

In short, in my case, walking did not help my walking,

That was how I found things too.. even thou I could do a lot of walking at the time.. doing daily walking didnt give me any extra fitness at all and I didnt improve with it.
....
soulfeast - if you are scared you may crash... then try much less. Start where you are confident at. Its better to work up slowly to what you can do, to find out where your limits are, then start doing too much exercise. Its a matter of patience and trying things slowly.

 

[Sushi]

I do a pilates class with machines once a week--most of this is lying down and I wear a heart rate monitor and have not gotten PEM.

Now that it is warm I am experimenting with slow, gentle swimming. I started at about 7 minutes and am doing about 18 minutes now every other day. So far no PEM but I am working up extemely slowly.

Sushi

 

[soulfeast]

All of your comments are helpful. Watched video and read most recent link where the person was walking 10 min 3 times a week and slowly added to that. It has been hitting me after this 3 day walking extravaganza that I have not just have PEM but this malfunctioning of aerobic functioning. Ive been lying down more the past year and know I am deconditioning as well.

How do you all figure your target rate? Is this by trial an error or are you using target rate at 55-60%? The last article, the author used 120-130 which would make this person very young or using a high percentage than 55-60%.

What is your "protocol" when heart rate gets past your target? Do you stop completely or wait until it's back down and start back up?

I am worried that as I get older this will be more difficult as target rate is going to lower.

Thank you all.