Let's Talk About Exercise

[Wynton]

Hey sophie_megan – welcome to the forum!

I empathize with your story very much. I was also knocked out of college due to CFS, although with me it started at the very end of high school and it took me almost 3 semesters to admit defeat. So I guess it wasn’t instantly like yours. (I’m 19 now).

Anyway, it’s great to hear that you’re back at school! It’s also good to hear that you feel your exercise is helping in your recovery! Sure it may not be a cure – there are no cures for CFS – but as you say, any help is welcome, and often quite hard to come by. Improvement also helps retain that sense of control over your illness and life.

I was wondering, what else do you do for exercise besides swimming and walking?

Also, you say “I am lucky that I have medication for my CFS”: could you explain more about that? Thanks!

Welcome again,
-w

[neil25]

Hi Wynton

I can relate to you about exercise. I do about 45 minutes in the gym which consists of 15 minutes on treadmill 5 minutes walking, 10 minutes running, 10 minutes on the bike, and the rest of the time doing weights such as bench press, chest press, cable pull, and various others. I feel absolutely rotten while doing it but the benefits come afterwards. It's a case of pushing yourself at the start then keeping to a strict exercise regieme and not going over it. It can be done though just takes a hell of a lot of effort. Trust me it was like climbing a mount everest when i first went back on a treadmill after having cfs but it is possible.

[*Emerald*]

I was curious to know if any of the sufferers who exercise at the gym have breathlessness palpitations or chest aches and pains - either before after or at the gym. Im amazed how well you do Neil, considering that your symptoms seem to be a little worse this past few month. You do well to carry on exercising

[Wynton]

Yeah neil that is quite an incredible workout. For me, at first I thought pushing myself was the problem but now I realize that I really can't even approach the point where I'm pushing myself, because at that point I'm just doing more harm than good. Right now I'm doing walking ~12 minutes every other day, and it's been a challenge to keep it to no more than this seemingly trivial amount of exercise. For instance, last week I walked one day and then did 12 pull-ups the next for some reason, and the day after that I was quite sick - I can't attribute it to this but I see no other cause. (It does seem that the times I do worst usually come from too much frequency, like failing to take a day of rest, rather than too much intensity on one given day.)

Emerald - I have not experienced palpitations ever, and have not had noticeable breathlessness since I stopped doing more intense exertion like sports. The only thing exercise does for me is make me much more exhausted and hungry than usual, and occasionally it makes me sick. But I'm a more mild case; I don't have many other symptoms either, like pain.

[*Emerald*]

Thank you for your reply Wynton. Well done with walking, some days I cant walk and with having two dogs its a problem, especially with a bouncy puppy. You can only do what your body lets you do

[Recovery Soon]

A comment was made that if you can work full time you don't have CFS.

This is false. I work full-time and definitely have CFS.

The same person who made the comment (Neil, I believe) said he trains in the gym for 45 minutes- running jogging, etc. He went further to say that he feels rotten while doing it, but feels benefits afterwards.

I would have to argue that if this is your experience then you cannot have true CFS.

The hallmark symptom is post exertional malaise - meaning that the unpleasant symptoms experienced during the workout pale in comparison to the avalanche of debilitation which follows like clockwork 24-36 hours later- which would render any kind of sustained regimen of vigorous cardiovascular exercise simply impossible for someone who fits classic CFS criteria.

[Wynton]

Yes, you're absolutely right, Mr. Recovery Soon. People have hugely varying cases of CFS. But it's all CFS. (At the moment... someday they'll probably be able to find more specific pathologies for different subsets of CFS).

I have found the following chart helpful for categorizing degrees of severity of CFS.

0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10 - fully recovered

As you can see, recovery soon could easily be only have 7/10 health but still be able to work full time. There's so much more in life that CFS can suck up before it starts to consume your livelihood. Aka 7/10 is still a very significant drop in quality of life.

Regarding what you say about post-exertional malaise, I agree that it is kind of the "hallmark" of CFS. While it is odd to me as well that Neil can do so much exercise at one time, I don't think it is necessarily "not CFS". I expect he has to rest a considerable amount after he exercises? And I expect he doesnt exercise more often than every other day?

[Jeffy14]

A comment was made that if you can work full time you don't have CFS.

This is false. I work full-time and definitely have CFS.

The same person who made the comment (Neil, I believe) said he trains in the gym for 45 minutes- running jogging, etc. He went further to say that he feels rotten while doing it, but feels benefits afterwards.

I would have to argue that if this is your experience then you cannot have true CFS.

The hallmark symptom is post exertional malaise - meaning that the unpleasant symptoms experienced during the workout pale in comparison to the avalanche of debilitation which follows like clockwork 24-36 hours later- which would render any kind of sustained regimen of vigorous cardiovascular exercise simply impossible for someone who fits classic CFS criteria.

Hello,

Neil could have CFS. It depends.
What I can say is that he should not feel rotten when finishing exercising.... It means he is doing too much and may be over training.
I have had CFS for 4 years and I am now able to do sports. I run 30 min 5 days a week.
I could have never imagined doing this 2 years ago. I would have "crashed" without a doubt and I would have had to stay in bed for 1 week (the time for me to recover).
I slowly built up my exercise tolerance.
I still have CFS and if I were to run lets say 1h, I would probably crash too.

Post exertional malaise is a hallmark for CFS, but the threshold can be pushed as your fitness improves/

[PamelaViktoria]

When I was at my worst, exercise would have made me worse. The one thing I could always do though was bounce on my rebounder. I just needed to stand and giggle alittle. But now, I am almost recovered, so I walk an hour every morning, jump on my rebounder (for my lymph), and lots of stretches.

[Wynton]

Wow Jeff and Pamela, that is great to hear about your big gains!

Jeffy - so it seems that you have dramatically improved in your physical capacity to exercise. But you say that you still "have CFS", unlike Pamela who is "almost recovered." How have the other aspects of CFS changed as a result of your exercise? Have you been able to reclaim some/most of your old life?

[Jeffy14]

Wow Jeff and Pamela, that is great to hear about your big gains!

Jeffy - so it seems that you have dramatically improved in your physical capacity to exercise. But you say that you still "have CFS", unlike Pamela who is "almost recovered." How have the other aspects of CFS changed as a result of your exercise? Have you been able to reclaim some/most of your old life?

Hello,

Yes I reclaimed most of my life. It's not perfect yet but I'm able to do most stuff on my own. It's a really pleasure to be able to go grocery shopping by yourself, meeting with friends, going out, exercising etc...
I dont work full time yet though. I'm considering starting with part time.
I really believe sports also makes me feel much better and allows me to handle more things. I'm more fit.
I can say I'm almost recovered, but I still have symptoms when I do too much stuff. So I'm not totally healed
Another improvement is the drastic diminution of the "tired but wired" symptoms. Before, I used to meet with friends and get excited. I had a weird feeling, like getting shaky when it was too long. When going to bed I used to be unable to sleep. Now it's almost gone. I noticed many little things like this. Same thing with stress.

Also, I dont think that sport should be an issue for people with CFS. Often people with CFS say that sport makes them feel worse. I just think they are doing too much. They just need to find the right level.
When I say sport, I consider walking 3 min a sport for someone with CFS. For someone bedridden just doing some motions with your arms should be considered sports.

I started my exercise program by simply walking 10min a day (in addition of the other things I was doing). I increase by 20% or 10% each week. Then, once I reached 30min walks, I increased the intensity of my walk by walking 10min fast and 20 normally, then increasing the time in higher intensity by 20% (and reducing the time walking fast, my sessions are always 30 min in total) each week until I was able to walk fast 30min. Then same thing but with jogging. 10min jogging, 20min fast walk and increasing jog time.
Next step, I plan on increasing time to go above 30min 5 times a week.
All this is in addition of my other activities.
So some days I could be walking 1hour or more and doing my exercise.