More about exercise...

[justy]

I was the fittest i have ever been before i got sick. I swam and walked long distances regularly, used my exercise bike daily and worked in a really physical job - as a gardener. In my spare time i gardened at home (i was renovating a severely neglected 2 acre garden.
Now i cannot do ANY exercise at all - not even walk far. I can walk and don't use a wheelchair, but i can only walk for about 5-10 mins before becoming extremely tired and feel like i will collapse. Then later that day i cannot function cognitively at all. I tried to keep up 1 15 min gentle walk and 20 mins of gardening a day, but now that is too much. Just trying to look after the kids, shower, cook and tidy a bit is enough for me - and i still dont feel better, even though i have reduced my activity so far. I didnt realise that other people with M.E/CFS could still do exercise like running or walking. Im glad you can -but it highlights to me just how disabled i am. And i was very fit and strong before.

 

[Wonko]

I cant walk worth a damn these days justy - even limping, hobbling and shuffling is becoming very limited atm - but walking normally - no - cant really do that anymore - and the last time I tried gardening I couldnt get up for 20 mins after planting 5 tomatoe plugs - so i dont do that anymore either

but I can still lift things provided I'm careful and follow the rules - different activity's - different rules and limits

 

[justy]

Hi Wonko, sorry to hear that. Its bloody awful isn't it!
I know what you mean about not breing able to get up. Sometimes recently i have goone into the garden to pick some beans for dinner or something and after just a couple of minutes of reaching or bending i feel like i am going to die!
Ive noticed that even though i am trying to rest more, it seems to be getting worse. I CANT work out why

 

[Victoria]

I say forget the word exercise - just try to keep up some movement so your lymph system doesn't come to a standstill (& then the lymph sytem stops excreting the toxins that build up).

I have gone from barely able to walk 15 mins home from work, without at least 3-4 stops for rests, to .....now, some days I walk slowly for 2-3 hours. It took many weeks of gradually walking more & more to build up to this amount of walking. When I stay home due to bad weather or whatever, after about 3 days my back pain gets much worse & I feel so lethargic & generally unwell.

Six months ago, before I quit work, I would never ever in a million years have thought I could walk around for 3 hours , but I do. I really believe slow mindful walking (like moving in slow motion on a space ship) has done wonders for me. As soon as I feel my heart rate increase, I have to slow down again.

I know this is not helpful aerobic exercise to increase one's cardiovascular fitness, but it's better than real exercise that you can only do for 5 minutes & then feel totally exhausted.

Try starting really, really slow. Same with cooking or doing any chore. Try to concentrate on moving really slowly, sort of gliding along or making every single movement as though you are walking on the moon. Once you get the hang of the method, you may find you can walk a little further each day (for those who can't walk at all at the moment).

It seems that many people with ME/CFS try to rush & do things in their small amount of energy they have each day. if you aim for a whole task, like having a shower & washing your hair, it fills you with dread as you JUST KNOW it will be too exhausting. So fill your mind with the first step.....putting a chair next to the shower. Sit down & then think about the next step, putting the towel on the back of the chair so you can reach it. Then think about getting in the shower & turning the water on. And so on. If you take mental steps in thinking about your next task, then you may find you can DO the physical task, step by step more easily (& feel less exhausted).

You need to mentally slow down. Instead of trying to walk quickly down the hall to get where you want to go, concentrating on the end of the hall.................just concentrate on EACH step, not the end destination (ie the room at the end of the hall). Don't rush to get your dinner on (before you collapse in a heap), concentrate of just cutting the one vegetable, then stop. Take a few breaths. And so on.

Split each task in your day down into small short steps. And mindfully go about your day.

Don't know whether I'm describing this very well at all.

As well as pacing your daily physical movements, pace you daily mind movement.

Try it (if you can understand what I'm trying to convey).

Justy, I'll take you as an example, since you're the previous post to mine. Try opening the door & standing on the doorstep admiring the view/garden/sky whatever. Then go down to the vegetable garden. Stand still & admire all the vegetables growing. Think how lucky you are to have fresh vegetables to pick. Then slowly bend over & pick a few. Stop, stand up straight & take a few breaths once again. Pick some more, then fill your container. Before you go inside, stand outside the back door again & smell the fresh air. Then go in.

I know you're going to say, you haven't got time, the dinner needs cooking. There are mouths to feed. But start dinner earlier so you have some time to break the task up into small segments. Don't look ahead to the completion of a task/walk/shopping etc. look ahead to the first part of the task.

Try it.

(takes a bit of practice - slowing down your mind).

 

[*GG*]

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.

I was biking up until 1 year ago, I paid a price for it though! I recently had disability testing done,, the 2 day exercise thing, and was "mild" disability. I have been sick for over 7 years now!

..."low maximum aerobic capacity would require him to work at 60% of his maximum effort to perfm many job-related activities. Thus, he must accomplish this work largely via anaerobic energy metabolism, resulitng in early onset fatigue. Consequently, his ability to perform such activities is limited and result in excessive fatigue in response to normal activities of daily living."

The finding for "me, GG" indicate low functional capacity (VO2max = 29.4 ml/kg/min) with low exercise toerance and recovery such that typical job, househould and social activities requre him to work above his anaerobic threshold. This sustained intensity of effor, for example duirng a typical work day, will elicit a significant and persistent fatiuge response."

GG

 

[urbantravels]

GG, was that testing done at the Pacific Fatigue Laboratories?

 

[JAXintheCity]

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.

Opening apologies if this makes no sense...bad day! Bare with me!

I feel ya! Before I got sick, I used to love running. I miss the feeling of pushing my legs, breathing in huge gulps of air, the music pounding in my ears - and just racing along beside nature. Now, I can barely take a tour of a building! My husband is an athlete (of sorts) and I wish I could run alongside him, exercise together, take a kickboxing class -- we were both into it at one point -- but I can't. He knows I can't and he doesn't hold it against me at ALL, he's even the one to remind me I can't and shouldn't when I bring up the idea. But just seeing him flex and feel good after a workout makes me SO jealous!

People might have assumed I was lazy when I was 'in the closet' about ME/CFS -- though, I'm actually one of the rare types that LOST weight with ME/CFS because it shot my appetite/stomache -- and I think some people assume if your underweight your healthy (which we know isn't true!). But now that I'm SO open about it -- I never get comments. In fact, I have one friend whose a Personal Trainer, and even though he's super passionate about getting people to work out, he's always very cautious when he talks to me. I have once even balked at him, "What does it feel like to be so healthy?!?"

And lol, I don't have the energy for video games either! Staring at the TV in a mix of brain fog and boredom... my daily exercise. (I try to play memory games, though, to keep mind healthy.)

 

[BEG]

I have 2 friends with CFS who I would say were sedentary individuals before getting this disease. I feel they have adjusted better to this desease than myself. I was very active in water aerobics in my 40's, and I, too, miss the comaraderie, intense workouts, and music pounding in my ears, as someone else has said here. That was 10 years ago.

Now, with a Vo2MAX of 16 (same as 80 year old) I can't sustain a heart-pounding session of anything. The "e" word (excercise) isn't in my vocabulary anymore. Instead I substitue strolling, reaching, bending, moving around my house, and most of all, conserving what little energy I have for a good time.

 

[helen41]

My VO2 max was measured at 17.2, and at 9.9 at my aerobic threshold the second day. I wonder if that actually correlates directly with the level of disability, tho.
I wouldn't describe myself as a severe case of CFS. I'm probably moderate. I can't work, but am ok around the house, can drive and manage short grocery shopping trips,etc. Not as disabled as many of the sufferers I read about on this forum. Is there a direct linkage?

 

[*GG*]

GG, was that testing done at the Pacific Fatigue Laboratories?

No, Ithaca, NY.

 

[helen41]

GG, did that report result in a disability decision (and if so, did they give it weight), or was it done for other reasons?
I'm waiting on pins and needles (literally, but that's another thread :Retro wink for my results from the Pacific Fatigue Lab. I'm so nervous and hopeful about the report...

 

[Snow Leopard]

I'm curious on what symptoms people get at the moment they over do it.

We all wake up with stiffness and soreness, but that in itself doesn't prevent you from doing mild exercise, such as walking short distances. But what happens when you over do it? For me, it is much more than a "jelly leg" feeling. Yes the legs do feel like jelly, but there is also a strange 'itchy' sensation that is hard to define. My feet also feel very swollen, as if they are about to pop - except they aren't visibly swollen at all, but they are bright red - it is the blood vessels that are swollen. I assume this is the feeling you get when the lactic acid levels reach the point of saturation.
If you keep exercising in this state, you soon reach a point where it is difficult to move at all, no matter how much you try.

 

[JAXintheCity]

I'm curious on what symptoms people get at the moment they over do it.

We all wake up with stiffness and soreness, but that in itself doesn't prevent you from doing mild exercise, such as walking short distances. But what happens when you over do it? For me, it is much more than a "jelly leg" feeling. Yes the legs do feel like jelly, but there is also a strange 'itchy' sensation that is hard to define. My feet also feel very swollen, as if they are about to pop - except they aren't visibly swollen at all, but they are bright red - it is the blood vessels that are swollen. I assume this is the feeling you get when the lactic acid levels reach the point of saturation.
If you keep exercising in this state, you soon reach a point where it is difficult to move at all, no matter how much you try.

The thing is, I don't have to exercise to "overdo it." It can be a long day at school, or working for two hours with a group of kids... what usually happens (because I take provigil to do these things) is the next day I am BEYOND EXHAUSTED. My legs and arms feel like heavy weights, and it actually HURTS...though not in a typical way of pain. I usually have diarrhea, night sweats, appetite loss and brain fog. This can last from a day to DAYS...and if I've really overdone it...months, months, months.

I spend half my time resting...and the other half barely functioning. MY FUN LIFE!

 

[Snow Leopard]

My legs and arms feel like heavy weights, and it actually HURTS...though not in a typical way of pain!

This sounds like our regular symptoms, though perhaps in greater severity. Can you clarify further?
I'm also wondering about when you feel like that and then continue to push yourself - what happens? Do your limbs physically sieze up? What does it feel like?

 

[JAXintheCity]

This sounds like our regular symptoms, though perhaps in greater severity. Can you clarify further?
I'm also wondering about when you feel like that and then continue to push yourself - what happens? Do your limbs physically sieze up? What does it feel like?

My limbs don't physically seize up. I can move...it just feels like everything is too heavy to move...it's difficult to even lift a pencil or a fork, and definitely walking is out of the question. Standing is a nightmare, too.

I always push myself, otherwise I'd have no quality of life. I use provigil just to function -- which masks some of that "heavy feeling" -- but doesn't cure it, and definitely doesn't help it, either. I try to spend half my week in bed, so that I can get out the other part of the time. Or, I try just not to think about it... if that makes sense, and push through it.

There isn't a moment where I can say -- oops, I've overdone it. Like I said, it usually comes on stronger the next day -- or the evening of -- and then gradually gets worse until I properly stop myself. My husband, however, is convinced there is no real rhyme of reason to this disease and it just pops up and gets nasty when it wants to! Sometimes, it feels that way!

There was a point in my disease where I could exercise. But since a bad relapse in 2007, I have not been able too - and I have never gotten back to that point. So, just be careful! Now, I consider grocery shopping - exercise. I do try to play Scrabble or Memory once a day to keep my mind healthy. Small victories?!?

 

[Victoria]

I'm curious on what symptoms people get at the moment they over do it.

We all wake up with stiffness and soreness, but that in itself doesn't prevent you from doing mild exercise, such as walking short distances. But what happens when you over do it? For me, it is much more than a "jelly leg" feeling. Yes the legs do feel like jelly, but there is also a strange 'itchy' sensation that is hard to define. My feet also feel very swollen, as if they are about to pop - except they aren't visibly swollen at all, but they are bright red - it is the blood vessels that are swollen. I assume this is the feeling you get when the lactic acid levels reach the point of saturation.
If you keep exercising in this state, you soon reach a point where it is difficult to move at all, no matter how much you try.

Andrew,
you describe exactly how my feet get when I go walking. I walk very , very slowly for 2-3 hours out taking photos. I can't walk fast without chest pain & breathlessness, but I HAVE walked normal walking pace for an hour & had NO Problems at all ! Figure that one out.

My ability to walk around the botanic gardens taking photos is a hit or miss affair. Sometimes I have to come home due to severe foot pain (& they are very red on the balls & frontal plates under my feet). But I actually have very prominent balls on my feet & I DO have frontal plate damage similar to that caused by overuse in athletes. I used to power walk about 10 hours a week back in 2003, so the scans picked up some damage caused by that over use.

It's usually my foot pain that brings me home after my walk, not exhaustion. I walk too slowly to get exhausted. LOL.


I did a 5 km walk 24th August (just checked my diary) and it took 3 weeks for my feet to recover. I could barely walk at all for 2 days, then had to make my walks very short for the next 2 1/2 weeks. I knew if I didn't get some exercise I would end up so stiff & my lower back in so much pain, I would have a really serious problem (I've had lumbar disc surgery 2 yrs ago, hence the need to move regularly).

Years ago, I had ultrasounds on my feet which showed bursitis & damage to the front plates.

It seems whenever I do anything repetitious with any limb, I get inflammation (like arthritis type of thing).

But since I've been walking more regularly, I am starting to improve. It's a long, slow haul to get to this improvement state, though. It's essential for me to wear thick, soled lace-up walking shoes. I also need good socks.

I always thought the right foot pain was due to a fall in 1998 (for which I eventually had ankle surgery 18 months after the fall).

And yes, I have walked so much that the next day, it's impossible to move. BUT, I know if I don't move (even a little slow walk), my lower back pain is intolerable. My hips, knees & ankles have improved dramatically since I have been going for very slow walks. I mean snail pace, not just slow.

The important thing is to MOVE.

It doesn't matter whether it's around your house, garden or further afield.

Even if your pretty much stuck in bed, you should move at regular intervals. Gets the lymph moving, so your body can expel the toxic buildup.

 

[BEG]

My VO2 max was measured at 17.2, and at 9.9 at my aerobic threshold the second day. I wonder if that actually correlates directly with the level of disability, tho.

Hi helen41, It would have taken an amublance to get me back the next day. I remember the first day I finally felt OK after the test. It was 32 days later. I basically have an activity level like yours.

 

[*GG*]

GG, did that report result in a disability decision (and if so, did they give it weight), or was it done for other reasons?
I'm waiting on pins and needles (literally, but that's another thread :Retro wink for my results from the Pacific Fatigue Lab. I'm so nervous and hopeful about the report...

I am in the process, very much like you are. Yeah, I was looking to go out on disability, but the news is not encouraging from my lawyer. They use the word mild a few times in the report but also say:

"Summary: Low functional capacity and compromised ability for aerobic Energy Production.
Maximum oxygen consumption is low compared to age and gener-matched normal values. VO2 at anaerobic threshold (AT) is low at 16.ml/kg/min or 4.7 METS."

I have what I would say at least a moderate disability, but in my opinion it feels severe! Like most of us, not the life I was living before.

 

[urbantravels]

I'm waiting on pins and needles (literally, but that's another thread :Retro wink for my results from the Pacific Fatigue Lab. I'm so nervous and hopeful about the report...

Hmm, I was sort of under the impression they give you the report right then and there. How long ago did you have the testing done? What do they tell you at the time?

 

[helen41]

I called and I should get the full report in the next day or 2. They did give me preliminary results when I went, but I don't have the full report, explaining the significance of the readings or my cognitive changes, which weren't tabulated yet, etc. I'm all about the details!
I had it done the 30th and 31st of Aug