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My experience with exercise testing -- the advantages and disadvantages

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I have been disabled with ME/CFS for 12 years. Things are starting to change for me but I have hit a road block. I have been taking high doses of vitamin B-1 (1500 mg) for the past 7 weeks. I definitely feel better and want to do more. I think the biggest thing it helped with was orthostatic intolerance. I can sit and stand for much longer periods of time now without feeling like I was dizzy or just needed to lay down.

I have many good days and if I did nothing with those days I would probably have more good days. But of course as soon as I started feeling better with more energy, I wanted to do more and I wanted to take it slow. So I joined a health club that has a Silver Sneakers program. Silver Sneakers is designed to help keep senior citizens fit and mobile. the average age in the class is probably about 70 (I am 53). It is kind of like chair yoga and does not include any aerobics. The classes are 45 minutes long and I am able to do the classes without perceiving any strong exertion.

After each class I feel hopeful that I am finally going to lead a better quality of life. But then about 36 hours later I start to feel that ME/CFS dead weight on my shoulders, my brain becomes disengaged, and I feel that I need to lay prone.

I am going to try it one more time and take my heart rate monitor with me. But I don't really think I am over exerting myself in the moment. I think it is probably the length of the classes. I guess I just have to decide if I am willing to leave the class early. It feels kind of like giving up to do so.

Oh, on another note about the B-1. I have a recumbent bike that I use once in a while and monitor my heart rate. I make sure I am not going above 100 BPM to keep in my range. I usually do about 10 minutes on it. It used to be a fairly gentle exercise keeping within that heart rate. Since taking the B-1, I have noticed that it feels like I have to work much harder to get my heart rate up to 100. It feels like I am exercising pretty hard. So something has changes there as well, but I am not sure what.

If anyone has any more advice on building up endurance and avoiding PEM, I would love to hear it.

Lynn

Stopping doing something that causes harm is not giving up - it's being rational and realistic. The fact that exercise can cause harm goes against norms that everyone has absorbed and are even ingrained in sayings like 'hard work never hurt anyone'.

Pacing and resting take a huge amount of willpower, and some people find that dietary changes do too. We are constantly fighting the urge to do more. That is not giving up!

To avoid PEM you need to reduce activity, pace it carefully, go more slowly than you would like to, switch between different types of activity (e.g. from using your arms to using your legs to using your brain), and resting any part of your body - or your brain - when they feel fatigued. It's hard, and it never stops being hard, but it does get a bit more instinctive with time.

Many of us also find that diet and supplements help, and you can find info on these in the relevant forums. I have found that with the right diet and supplements my excess fat has been replaced by muscle, so that I am stronger and can do more.
 

Artstu

Senior Member
Messages
279
Location
UK
I have found that with the right diet and supplements my excess fat has been replaced by muscle, so that I am stronger and can do more.

You're making it sound like the fat turned into muscle, surely you can't gain muscle size without working it, unless the supplements you're taking are same ones as used by body builders?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Not always, I can get away with a few months of increased activity before it catches up with me.

I have noticed that if I continue with exertion, the PEM/PENE often does not appear until a couple of days after I stop. It seems as though continued exertion somehow delays the adverse effects. But it can't prevent them, and I think that the longer you continue pushing the worse the after-effects eventually are.

A stark example of this was during one of the recent cold winters. As I was very poor, I had to rely on scavenged wood from the fields for heating. I usually went out scavenging about every 3 days. But when it was seriously cold, I was having to do it more often. Once I did it for 3 days in a row, then was wiped out for a week - really ill and could hardly do anything. A few months later I was seriously ill with near-life-threatening hyponatraemia (low blood salt) which I am sure was due to further over-exertion when I had already weakened my body's ability to withstand it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
You're making it sound like the fat turned into muscle, surely you can't gain muscle size without working it, unless the supplements you're taking are same ones as used by body builders?

What actually seemed to happen was that I lost the fat first. It started falling off effortlessly when I cut out gluten, and continued when I reduced grains and sugar.

I was also taking l-glutamine to help to heal my gut. I know this is also used by athletes or body builders.

But I don't think I noticed the muscles strengthening until I started another supplement containing acetyl-l-carnitine and alpha lipoic acid.

I have not done any dedicated exercise at all, as I am active doing everyday tasks. This includes growing and selling plants, which can be quite strenuous - too strenuous in fact.

All I have done is to use the muscles more during these, such as when walking, bending, etc. They feel so good I like the feeling of using them. So, for example, when I am washing up, I sometimes test how much I can tighten my gluteal muscles and abs, and lean forwards, backwards and sideways as I kneel on a chair (which I do to rest my legs). When I bend to pick things up, I try using muscles other than those in my legs. When I walk I find that I can use my pelvic muscles more, taking some of the strain off my knee and calf muscles so that they don't tire as quickly. When I wake up in the morning I now stretch in all directions before getting up, which I used to have to be very careful about as I sometimes got cramp, as well as just not having much flexibility.

That's all!
 

maddietod

Senior Member
Messages
2,859
SOC, I'm confused about the tests at Dr. Rey's and Dr. Sol's, both in Miami.

Do they use different tests? Did Dr. Rey 'send' you over Dr. Sol? Does Dr. Rey offer an exercise test that's easy?

Re exercising, I joined a gym about 2 years ago. I focused on the weight circuit, low weights and low reps, hoping for very gradual increases. I went for 3 months, and never could increase either the weight or the reps.
 

SOC

Senior Member
Messages
7,849
Not always, I can get away with a few months of increased activity before it catches up with me.

That does not sound like PENE. This is what PENE is:
To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
“Characteristics are:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.”
I don't think catching up with you after a few months qualifies as "delayed by hours or days".

Have you read the International Consensus Criteria for Myalgic Encephalomyelitis? Here is an easy summary. You may also want to read the sections on exercise in the ME/CFS Primer for Clinical Practitioners.

The type of exercise you are advising is definitely NOT recommended for ME/CFS patients. In fact, it is contraindicated.

People with ME are advised to stay under our own anaerobic threshold, which is significantly lower than that of healthy people. The fact that you can exercise for extended periods of time at and above the anaerobic threshold for healthy people suggests that you do not have ME. Since you are in the UK, it's possible that you were diagnosed using the Oxford Criteria for CFS, which is a very, very broad definition which includes many fatiguing conditions. Most people here have the much more serious illnesses ME (defined by the ICC) or ME/CFS (defined by the CCC). This only matters because you are advising exercise for people with ME that is not only ill-advised, but dangerous for us.

It's wonderful that you are able to exercise the way you do. I'm glad that you can do it and that it is helping you. That does not mean that your exercise philosophy is at all suitable for people with ME.
 

SOC

Senior Member
Messages
7,849
SOC, I'm confused about the tests at Dr. Rey's and Dr. Sol's, both in Miami.

Do they use different tests? Did Dr. Rey 'send' you over Dr. Sol? Does Dr. Rey offer an exercise test that's easy?

Re exercising, I joined a gym about 2 years ago. I focused on the weight circuit, low weights and low reps, hoping for very gradual increases. I went for 3 months, and never could increase either the weight or the reps.

Dr Sol works along with Drs Klimas and Rey. We had to make a separate appointment for the exercise testing with Dr Sol, but it was done in the same office immediately after our appointments with Dr Rey.

Your exercise plan at the gym seems to be the kind of exercise that's suggested for us. It's discouraging when you can't make progress despite the work, isn't it?
 

Artstu

Senior Member
Messages
279
Location
UK
SOC I agree almost entirely with what you are saying, I'm 99.9% sure I have ME/CFS, right now I have all the symptoms you highlight for PENE, I guess my over active period has finally caught up with me. I'd have thought anyone with the illness can achieve what I do with determination and will, I'm prepared to take the risk, it's up to each one of us to live our restricted lives as we see fit.
I've also met someone else who pushes himself beyond what I do to be able to continue walking with his walking group, so I'm certainly not unique.

I note that exercise is advised in one of your links

Higher functioning patients (functional capacity
rating 5-9; Appendix C). Interval training can begin
with leisurely paced walking, swimming, or peddling on an exercise cycle.
74 The initial duration
may vary from 5-15 minutes a day depending on
how much the patient can do without provoking
symptom flares. These higher functioning patients
may also benefit from adaptive yoga and Tai Chi.
 

Purple

Bundle of purpliness
Messages
489
SOC I'd have thought anyone with the illness can achieve what I do with determination and will, I'm prepared to take the risk, it's up to each one of us to live our restricted lives as we see fit.

Sadly, you are mistaken. You may just be lucky - determination and willpower has little to do with getting better, but it can make many determined people with strong willpower much, much worse. People are not living restricted lives because 'they see fit' to do so, they live restricted lives because they have no choice. And some because they have been made permanently worse by exercise or using their determination and willpower to do as much as they can while damaging their bodies.

The exercise advice you quoted is inapplicable to every single severe ME patient (i.e. at least a quarter of PWME) and most moderate PWME by ICC (moderate being housebound) so it really only applies to people with the mild forms of the disease - if at all.
 

Mij

Messages
2,353
Actually I don't even think it applies fo "mild forms" of ME. I was a miliish form at one time and continued to exercise (running of all things!!) and progressively got worse (and I believe stayed worse). Ohhhhh if I could go back and listen to what my ME doc advised me many years ago I'd be better off today.

Artstu, determination and will power may help you psychologically but it won't physically long term if you have ME. Sorry to say.
 

Purple

Bundle of purpliness
Messages
489
Actually I don't even think it applies fo "mild forms" of ME. I was a miliish form at one time and continued to exercise (running of all things!!) and progressively got worse (and I believe stayed worse). Ohhhhh if I could go back and listen to what my ME doc advised me many years ago I'd be better off today.

Yes, of course, I didn't express myself very well. Even those with mild forms cannot increase or maintain activity that is beyond their threshold. Doing more than the illness allows leads to deterioration, as is the hallmark of ME. (though there can be fluctuations and people who do improve can start doing more - but it is the improvement in the illness that allows them to do more; not doing more leading improvement in the illness).

Sorry you are worse now through exercise :(
 

SOC

Senior Member
Messages
7,849
SOC I agree almost entirely with what you are saying, I'm 99.9% sure I have ME/CFS, right now I have all the symptoms you highlight for PENE, I guess my over active period has finally caught up with me. I'd have thought anyone with the illness can achieve what I do with determination and will, I'm prepared to take the risk, it's up to each one of us to live our restricted lives as we see fit.
I've also met someone else who pushes himself beyond what I do to be able to continue walking with his walking group, so I'm certainly not unique.

I note that exercise is advised in one of your links

The exercise advised does NOT include aerobic exercise at or above the patient's anaerobic threshold. If you go back and read carefully you will see it says "leisurely paced" and "5-15 minutes a day" -- and that is only for higher functioning patients. Those of us who can, do some form of appropriate exercise such as leisurely walking, or supine strengthening exercises. THAT is the exercise appropriate for people with ME.

I prefer to use my determination and will power to follow a demanding treatment regimen which allowed me to go from bedbound to working part-time and doing basic self-care including necessary general housework. I find that a much more intelligent, mature, and responsible use of my energy than exercising to exhaustion and then laying around on the couch the rest of the time.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
SOC
I've also met someone else who pushes himself beyond what I do to be able to continue walking with his walking group, so I'm certainly not unique.

We know you're not unique, Artstu - that's why we know what happens when you push yourself, and many of us have had to watch and/or experience the virtual car crash that follows, and it is distressing. It's a major reason why I left another forum system - people kept following the psychoquacks' advice, or just giving in to their urges to do more, and we knew what was going to happen. We told them, but they wouldn't listen. I had to do a virtual equivalent of covering my eyes or hiding behind the sofa. Finally I had had enough of this trauma and left them to it.

I wish there had been people to warn me before I made myself worse. I'm still climbing back out of that hole years later.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
People are not living restricted lives because 'they see fit' to do so, they live restricted lives because they have no choice.

To be fair to Artstu I think he(?) was saying that people choose HOW to live within our restricted lives rather than that we choose to have restricted lives. But it looks as though Artstu has not in fact been living within the restrictions, and has effectively overspent and gone into the red energy-wise.

So now is the time to rest, rest, and rest again. Give your body what it needs - the right diet and supplements, and rest. That will hopefully minimise any damage done.
 

Artstu

Senior Member
Messages
279
Location
UK
I prefer to use my determination and will power to follow a demanding treatment regimen which allowed me to go from bedbound to working part-time and doing basic self-care including necessary general housework. I find that a much more intelligent, mature, and responsible use of my energy than exercising to exhaustion and then laying around on the couch the rest of the time.

I'm not here knocking how people deal with their illness, we all make choices in how we use our limited energy, so if that comment is aimed at me I'd appreciate it if you gave me a little more respect.

Time for me to bow out of this now, clearly you all know best.
 

Artstu

Senior Member
Messages
279
Location
UK
Sadly, you are mistaken. You may just be lucky - determination and willpower has little to do with getting better

I've not suggested it will make me better, I'm just pointing out what it is possible to achieve. However it would seem you've all seen it all before, and will be only too glad to say I told you so if I end up going backwards.