More about exercise...

[L'engle]

A bit of an odd question maybe, but are there many people here who were sedentary when they were healthy and so would not be exercising even if they were at full capacity? I find it so difficult each day that I can't exercise and have to limit physical activity. My worse crash came on from continuing to exercise. I wonder if sedentary people tend not to have a worsening of CFS, or if they get just as sick and have less underlying fitness to keep themselves from going down hill.

I know some people who are perfectly healthy but just don't like to exercise. If I say I have trouble with exercise they tend to assume I just don't like physical activity, as they don't.

 

[Esther12]

I was never did much intentional exercise, but was never sedentry either. I'd normally walk a mile to work/uni and a mile back each day. Often then another couple of miles getting about places. A few hours dancing on a night out... walk's in the country-side... going shopping...

all these normal activities add up pretty rapidly. I used to love just wandering all over the place and exploring nooks and crannies.

I don't think anyone would be as sedentry as many CFs patients are unless something was wrong with them. The closest I've come across was an obsessive World of Warcraft player.

 

[dancer]

I've wondered about this too. Prior to CFS I was active, and now I keep pushing the edges of exercise (and getting worse from it) because I miss it SO MUCH. I've seen some increase in my ability to walk slowly up to a mile or so, but anything that raises my heart rate brings on a whole rash of symptoms and worsening of health. I begin to accept that truth, and give in to the sedentary requests of my body and then I get a little better....(by better, I mean that if I stay prone and resting most of the day, I gradually have less severe symptom - but I also have no life!) so then I begin to wonder if THIS TIME I could push a little. So I try something aeorbic for just one or two minutes... or venture out to do ONE errand - and the next day begin sinking. Perhaps if I'd been a couch potato prior to CFS, I wouldn't be resisting the very clear (and shockingly limiting) parameters of this illness as much.

 

[L'engle]

I was never did much intentional exercise, but was never sedentry either. I'd normally walk a mile to work/uni and a mile back each day. Often then another couple of miles getting about places. A few hours dancing on a night out... walk's in the country-side... going shopping...

all these normal activities add up pretty rapidly. I used to love just wandering all over the place and exploring nooks and crannies.

I don't think anyone would be as sedentry as many CFs patients are unless something was wrong with them. The closest I've come across was an obsessive World of Warcraft player.

I agree that there is a big difference between not doing strenuous exercise and not being able to perform daily activities. I guess a lot of the people I'm thinking of who hate exercise are obsessive gamers, haha!

 

[aiden424]

Before I got sick I was thin, healthy, energetic, and hardly ever, ever, sat still. I was married, had three small kids, a job, and a house to keep up. I am happiest when busy. After getting sick I couldn't even sit up let alone walk or do anything else. I was bedridden the first two years until I figured out to use a wheelchair which only helped some.

I wish I was the type of person that could just sit all day. Well I guess I am now.

Kathy

 

[Wonko]

whilst I rarely did any form of directed exercise, sports etc. I did walk everywhere, had a very physical job and walked most days recreationally - probably did a minmium of 10 miles a day most days + work - so I wouldnt describe my former self as sedentiary

 

[Sallysblooms]

I exercised a lot before CFS. Not too much, just right. Once a day, at the gym with friends. Walking, etc also. CFS made it impossible to do the same kind of exer. I was able to walk though.

When P.O.T.S. began almost two years ago, I was unable to even lift my head, no walking even in the house. I struggled to the bathroom and then back to bed. I couldn't be left alone. That went on until I found the right doctors and found out what was wrong. Took about 8 months since I couldn't stand or go outside to see my CFS doc. I slowly got better with my supplements and then went Gluten Free, so all is getting better with the POTS and CFS. I use the w.chair for church and lots of walking, but I can get around the house much better and I can walk into a restaurant fine. I am seeing so much improvement.

Exercise with CFS and POTS has to be what you can do. As you are sitting, lifting your legs a few times can be all you can do. That is exercise. Then you do a few more...It is good to move even if it is just your feet as you sit. I do more now and with POTS it is important to keep muscles in the legs and core as strong as you can with POTS so the blood can reach the head better. Moving is good when you can, but hard exer. just makes it worse for most. Everyone is at different levels though. Also, each day is different.

 

[ukxmrv]

I was active but didn't play much organsed sport. Lots of walking, dancing, horse riding and a little tennis. As a child I was very active and belonged to a amateur athletics group - long walk to and from school each day plus PE.

When I became ill I tried the usual things but my health deteriorated badly after each attempt to do simple things like a walk or thai chi/Yoga etc. I've tried 2 graded exercise programs (gradual build up) but both were failures which left me bedbound, unable even to brush my hair.

One very sedentary family member developed CFS and coped much better with it as she did not even try to exercise and was far better at pacing. She's recovered to a much better level than I am at.

 

[L'engle]

I was never into organized sports either. Mostly I took long walks and did strengthening and aerobic exercise on my own. My current exercise tolerance is really variable. It's not something I can increase through GET it's just sometimes there, sometimes not.

I can't imagine giving up on exercise, though. Even if it worked for the CFS somewhat, it would lead to so many other health problems. I get very unhappy when I can't exercise for several days. Just getting better enoug hto do a few things but having to give up on exercise even to do them would be soul destroying for me. Glad that it worked for someone though.

 

[L'engle]

Thanks for all the replies, BTW!

 

[taniaaust1]

I think those who are active and push themselves.. are more likely to crash into CFS/ME in the first place. If i hadnt been a person who pushed myself so much.. i dont know if I ever would of gone into long term full blown CFS/ME.

Ive always (well was before ME!!) been a very active person. I loved sports. I played netball and did dance as an adult. I loved hiking, (small) mountain climbs, horseriding etc etc (I even did a 2 day marathon when i was in remission), I did yoga and tai chi, did swimming and also went to the gym. All this stopped, had no choice... with the ME.

This sucks all the more when id love to be exercising and had a CFS/ME specialist.. try to encourage me to exercise more. (fortunately he now accepts i cant).

 

[Becky]

One of the many things I miss is working out. It was one of the activities my husband and I did together. I was in the gym 3-4 times a week and a yoga class once a week. We'd walk in the mornings together. I can now do none of those things without horrible repercussions. I miss it and I miss that it was something we did together. And when I have people tell me I would feel better if I would exercise I want to punch them in the face (not really I don't have the strength).

Breathing exercise is about all I can manage. And my husband is at the gym as I write this.

 

[soxfan]

I was 5 months into running when I became ill.. I had been hoping to try a half marathon with my son who has since run 4 marathons. Anyway I was still able to run for 2 years although not as much as previously. It was probably a big mistake and led to me becoming more sick. My doctor at the time encouraged me to keep running.
Now I am still able to walk although I am starting to think it might be having a larger impact on my recent downward spiral than I thought. I walk 5 days a week and run a 5K once a year.

Even if I go days without walking it had seemed to make no difference but now I think that is changing. I miss running and will always wonder if I could have done that marathon.

 

[L'engle]

Sad that everyone's having the same problem. I wonder if I just stopped for a bit if I would feel better, but a few days without activity leaves me feeling like something is really missing, which I guess it is.

 

[Mya Symons]

A bit of an odd question maybe, but are there many people here who were sedentary when they were healthy and so would not be exercising even if they were at full capacity? I find it so difficult each day that I can't exercise and have to limit physical activity. My worse crash came on from continuing to exercise. I wonder if sedentary people tend not to have a worsening of CFS, or if they get just as sick and have less underlying fitness to keep themselves from going down hill.

I know some people who are perfectly healthy but just don't like to exercise. If I say I have trouble with exercise they tend to assume I just don't like physical activity, as they don't.

My husband and I both have CFS/FMS. He has always hated exercise and I used to love it before the CFS and fibromyalgia. I used to work out at the gymn 4 or 5 days a week for 1 1/2 hours to 2 hours. He did not exercise. We are both sick. Are illnesses are very similar. We even take most of the same medicines. I don't think it matters whether you were sedintary or active. This disease doesn't discriminate.

 

[soxfan]

It is really hard for me when I can't walk for a few days..I know some days I shouldn't but do anyway. It is the one thing I can't seem to give up. If I knew for certain that it makes me worse then I would stop in a second but I haven't really been able to distinguish whether it does or not. So for now I have to keep walking....

 

[heapsreal]

i think having a certain level of fitness pre cfs helps as alot, some top class athletes who have cfs have been able to train to some degree but not like their pre illness level, obviously they have days where they cant do anything. I was big into weight training before i got cfs, i use to be able to squat about 160kg, today with a few easy sessions behind me i can do 120kg, which if someone saw me do that would say, he doesnt have cfs, but thats on a good day and it is a significant drop in what i was able to do, then there the few days afterwards where im hobbling around like i got marbles in my boots. when im going through a good period where i can train, the volume of training i do is very low and would last 30 mins with most of that time sitting down waiting to do an exercise where i would do only 1 repetition then rest, i have found if i get into something physical where i get out of breath, thats when i crash later, plus during it i get nauseas etc. so i suppose what im saying is if u have a big base of fitness prior to your illness eg marathon runner, on a good day running 2 miles wouldnt be so difficult as theres that high base level of fitness.

 

[L'engle]

i think having a certain level of fitness pre cfs helps as alot, some top class athletes who have cfs have been able to train to some degree but not like their pre illness level, obviously they have days where they cant do anything. I was big into weight training before i got cfs, i use to be able to squat about 160kg, today with a few easy sessions behind me i can do 120kg, which if someone saw me do that would say, he doesnt have cfs, but thats on a good day and it is a significant drop in what i was able to do, then there the few days afterwards where im hobbling around like i got marbles in my boots. when im going through a good period where i can train, the volume of training i do is very low and would last 30 mins with most of that time sitting down waiting to do an exercise where i would do only 1 repetition then rest, i have found if i get into something physical where i get out of breath, thats when i crash later, plus during it i get nauseas etc. so i suppose what im saying is if u have a big base of fitness prior to your illness eg marathon runner, on a good day running 2 miles wouldnt be so difficult as theres that high base level of fitness.

I agree. I was into hiking a lot before and luckily my leg muscles haven't weakened much because I can still walk up hills sometimes. It is completely unreliable on a daily basis how much exercise I can do (many days its nothing). But if I get out of breath, like if I try to jog for 2 blocks, then it gets really bad later, instead of just sort of bad, haha. My partner as well used to lift really heavy weights, now can still lift a lot by most people's standards so of course he really doesn't look like he has CFS. It seems like any energy either of us get, we start exercising, even if it's just a few sit ups and then retreating to the couch to feel ill for hours.

 

[soxfan]

I agree also...I think because I was so physically fit when I became sick is why I was able to continue for a few years. Then when I started treatment for Lyme is when I actually lost the energy to run. Then I started walking alternating with running and then I just walked...
I hope as we all do that someday we will be able to return to whatever exercise etc..we did pre illness.

 

[Wonko]

i think having a certain level of fitness pre cfs helps as alot, some top class athletes who have cfs have been able to train to some degree but not like their pre illness level, obviously they have days where they cant do anything. I was big into weight training before i got cfs, i use to be able to squat about 160kg, today with a few easy sessions behind me i can do 120kg, which if someone saw me do that would say, he doesnt have cfs, but thats on a good day and it is a significant drop in what i was able to do, then there the few days afterwards where im hobbling around like i got marbles in my boots. when im going through a good period where i can train, the volume of training i do is very low and would last 30 mins with most of that time sitting down waiting to do an exercise where i would do only 1 repetition then rest, i have found if i get into something physical where i get out of breath, thats when i crash later, plus during it i get nauseas etc. so i suppose what im saying is if u have a big base of fitness prior to your illness eg marathon runner, on a good day running 2 miles wouldnt be so difficult as theres that high base level of fitness.

so I'm not the only one who lifts things sometimes - I thought I was in a minority of one on this forum