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I would kill to do a good workout. I've almost done it a couple times, too, figuring what the hell? Hell is probably the right word.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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"One of the best treatments—exercise—is diligently avoided by many people with CFS."
- Thread starter Aurator
- Start date
Hell...Hath...No...Fury..
Senior Member
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Ditto. I'd give anything to go for a sprint.
Hell...Hath...No...Fury..
Senior Member
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Me too. Do you think thats why we wake up exhausted?
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- Tampa FL
About two months ago, I felt amazing and I ran a little tiny bit...about 100 yards. Not very fast, but it was AWESOME.
shannah
Senior Member
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As much at this kind of damaging coverage boils my blood, I personally think we need to jump on these articles and inundate them with comments. Perhaps they will examine their facts in any future articles they write about this illness.
People are beginning to leave comments. There's four there now.
Good job everyone!
People are beginning to leave comments. There's four there now.
Good job everyone!
Hell...Hath...No...Fury..
Senior Member
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- UK
Haha i wrote about doing this myself about 7 years ago halfway into the illness when i was doing well on antioxidants, i didn't have a wheelchair back then, so after i did the flat out sprint and crashed into the ground at full speed as soon as my legs gave up. My mam pushed me home in a shopping trolley.
Paid the price for months, but it was worth it at the time.
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anciendaze
Senior Member
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I still have a 15-speed bicycle in storage, in case I ever recover to the point I can resume using it.
There is a very good question to ask these people, since they claim to be experts in rehabilitation. Even if patients like ourselves are only 1/2 percent of the general population we must constitute a higher percentage of those recovering from serious illness. How could anyone who has studied the subject thoroughly have overlooked those patients whose capacity for exercise suffers a prolonged drop, lo these many years?
There is a very good question to ask these people, since they claim to be experts in rehabilitation. Even if patients like ourselves are only 1/2 percent of the general population we must constitute a higher percentage of those recovering from serious illness. How could anyone who has studied the subject thoroughly have overlooked those patients whose capacity for exercise suffers a prolonged drop, lo these many years?
out2lunch
Senior Member
- Messages
- 204
Take a page from my "Dealing with PT Dummies" guidebook.
Whenever some physical therapy "professional" attempts to advocate exercise in dealing with ME/CFS/FM, I ask them if they know what the anaerobic threshold is. Most of the time, they answer in the affirmative.
Then I ask them what specific forms of exercise they would prescribe to a patient with an anaerobic threshold of 92 bpm.
Their response:
Many of us have had the Snell/Stevens CPET Two-Day testing. We know we can't handle aerobic exercise.
And trying to do physical strength training while keeping the HR below that threshold is really tough!
For me, I can only do Pilates reclined or sitting, some yoga, and some Feldenkrais stretching. That's it.
I doubt these ACE muscle brains can figure out the screwed up anaerobic threshold in our disease.
Whenever some physical therapy "professional" attempts to advocate exercise in dealing with ME/CFS/FM, I ask them if they know what the anaerobic threshold is. Most of the time, they answer in the affirmative.
Then I ask them what specific forms of exercise they would prescribe to a patient with an anaerobic threshold of 92 bpm.
Their response:
Many of us have had the Snell/Stevens CPET Two-Day testing. We know we can't handle aerobic exercise.
And trying to do physical strength training while keeping the HR below that threshold is really tough!
For me, I can only do Pilates reclined or sitting, some yoga, and some Feldenkrais stretching. That's it.
I doubt these ACE muscle brains can figure out the screwed up anaerobic threshold in our disease.
anciendaze
Senior Member
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My heart rate exceeds 92 bpm when I stand up.
I run five miles per day, followed by lifting weights as I'm preparing for a triathlon.
NOT!!
I did try warm water therapy with a PTwho specialized in FM and MS. I found it relaxing and I was less likely to crash. The problem like so many things, was getting there. So now I just soak in the tub.
Right now my exercise routine consists of going to get the mail!
Almost forgot, the other day I was actually able to go to Target. My warm up was walking around the store with my sunglasses* because of the lights and such. The actual exercise was taking my cart back into the store.
Barb
*This can sometimes be problematic as I forget I have them on, resulting in buying clothes that I thought were a different color. It's just to much to actually try on the clothes. Tbh, I have always found shopping for clothes tiring. It's worse now.
NOT!!
I did try warm water therapy with a PTwho specialized in FM and MS. I found it relaxing and I was less likely to crash. The problem like so many things, was getting there. So now I just soak in the tub.
Right now my exercise routine consists of going to get the mail!
Almost forgot, the other day I was actually able to go to Target. My warm up was walking around the store with my sunglasses* because of the lights and such. The actual exercise was taking my cart back into the store.
Barb
*This can sometimes be problematic as I forget I have them on, resulting in buying clothes that I thought were a different color. It's just to much to actually try on the clothes. Tbh, I have always found shopping for clothes tiring. It's worse now.
Strawberry
Senior Member
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- Seattle, WA USA
I often dream of gymnastics and stretching, and yes it feels fantastic! Until you wake up. But it is better than when I am in severe crash, and I can feel the fatigue in my sleep so bad that I dream of not being able to walk. THAT sucks. I will take sleep exercise any day of the week!I used to love running. I sometimes dream about it, I can run (or swim) for miles and miles and it feels so damn good! And then I wake up.
EDIT": forgot to add that I can't believe these idiots actually think we are lazy by choice. pfft.
Hip
Senior Member
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The article appears to have been taken from page 13 of the Woodbury Gazette of March 17, 2011, where the author was Lori Offenhauser.
alex3619
Senior Member
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- Logan, Queensland, Australia
I have had running dreams even before I ever heard of Forrest Gump. I used to love running. Even now I run for hours and engage in vigorous contact sports ... in my open world computer games. Sadly such games are sometimes too much for me. Even virtual exercise can be too hard sometimes.I used to love running. I sometimes dream about it, I can run (or swim) for miles and miles and it feels so damn good! And then I wake up.
A worldwide organization called American Council on Exercise promoting GET and dismissing the alarming pandemic of "fatigue"-related illnesses...this makes me want to get out my tin-foil hat.
So many "American Council On [ ]s" have been sham organizations designed specifically for the purpose of influencing public opinion so that some group of individuals can maximize profit somehow, somewhere. I'm going to guess this is the same Bullshit Machine that has had CDC lying to and stealing from us for nearly 40 years, that has been pretending chronic Lyme doesn't exist, that gives limitless voice to Wessley &Co, that has UNUM and whatever that other one is declaring people fit for work who die two days later.
Follow the money.
So many "American Council On [ ]s" have been sham organizations designed specifically for the purpose of influencing public opinion so that some group of individuals can maximize profit somehow, somewhere. I'm going to guess this is the same Bullshit Machine that has had CDC lying to and stealing from us for nearly 40 years, that has been pretending chronic Lyme doesn't exist, that gives limitless voice to Wessley &Co, that has UNUM and whatever that other one is declaring people fit for work who die two days later.
Follow the money.
heapsreal
iherb 10% discount code OPA989,
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Interesting thread. I had a dream this morning where i was walking through all these different gyms, all good set ups. I had 6 or so to choose from to join. As much as i wanted to join up, i couldn't force myself to join one as i just knew it would be a waste of money. My wife was beside me saying, are you sure, you know you want get your money's worth.
very weird. Its not like we are avoiding exercise on purpose but thats what many think.
very weird. Its not like we are avoiding exercise on purpose but thats what many think.
I read a study some time ago (not sure if I'll find it again) that said that intense visualisation of exercise had some (not all of course) of the same positive effects as real exercise. I tried it, as I've found visualisations very useful in the past. But I crashed the same, I guess cause it involved so much mental concentration. Actually, even visualising exercise was hard, could hardly get my imaginary arm up.