Increasing aerobic workout - I crash after 15 mins - but want to gradually increase...?

[*GG*]

It actually does help me in some ways For about 5 hours I feel human and am mentally sharper, clearer etc, get a lot done. My crashes are not incredibly bad.

My exercise does not help me feel mentally sharper, (but coffee does), I do not do lots after either, I do not exercise the day afterwards, typically. I enjoy my bike rides, been doing them for about 30 years now, been ill for 12 years! Not sure if the LDN is what has helped with feeling "ok" after exercising, I used to be completely wiped out!

I am in the US, and have only been diagnosed with CFS(CFIDS) and Fibro etc.. not ME. Have been in a few research studies also, so perhaps some of this dichotomy will be explained at a later date?

sure wish that "runners high" would come back, but I'm happy to just be able to do a little exercise, makes me feel more "normal" and human. LOL

GG

Edit. I did crash in Fall 2009, was out of work for almost 3 months, so had been working 6 years into my illness then. I did not bike the summer following, didn't want to push myself to much.

 

[jeff_w]

@Bansaw - Many of us who have ended up bedridden started out as healthy as you are right now. We had "Mild ME/CFS" and could still work, and we considered ourselves still able to exercise -- even though, like you, we had symptoms.

@SDSue said it very diplomatically:

This is a prime example of ME being impossible to comprehend, sometimes even for those who have it. How many of the rest of us did this exact thing - pushing and crashing until it was no longer an option?

In other words, it seems you don't fully comprehend what you're dealing with yet.

Please understand that by trying to exercise, you're playing with fire, and you're setting yourself up for learning an extremely painful, life-altering lesson.

At this point in time, you are extremely fortunate. If you stop pushing yourself now, there's a decent chance your illness won't progress. Many of us would do anything to go back in time to be in your position again. Don't learn the hard way.

@Bansaw - Your question makes it very clear that you need to spend more time on these boards, reading about what causes people to become disabled. Please stick around.

The worst thing you can do is be in denial about how serious this illness is and ignorant about what causes it to progress.

 

[Bansaw]

The worst thing you can do is be in denial about how serious this illness is and ignorant about what causes it to progress.

Thanks, this is precisely the reason why I am here, and am under a very good doctor now and did spend over $1,000 seeing the respected Dr.Lapp a few months ago. I am taking it very seriously.

 

[SDSue]

Many of us would do anything to go back in time to be in your position again. Don't learn the hard way.

This! Where were you 5 years ago when I need you, @jeff_w!

 

[jeff_w]

Thanks, this is precisely the reason why I am here, and am under a very good doctor now and did spend over $1,000 seeing the respected Dr.Lapp a few months ago. I am taking it very seriously.

Good!

The hardest part about "taking this seriously" is making the choice to scale back your activity level. Human beings are just not wired to do that! We want to be active.

You're still relatively healthy and quite functional, so I would imagine it would be extremely hard for you (and anyone else) to intentionally and consistently scale back. It's even psychologically painful to do this. But, this is absolutely crucial.

Even with great medical help, you need to scale back your activity level to prevent your illness from progressing.

Good luck!

 

[jeff_w]

This! Where were you 5 years ago when I need you, @jeff_w!

Ah, @SDSue! If only we'd known.

(And 5 years ago, I was still healthy. Pumping iron 3 days per week, running most mornings and whenever else I felt like it, partying, full time school... How things have changed!)

 

[JaimeS]

@Bansaw - stick around, you're going to learn loads!

(Uh, not from this post which is, I believe, of ordinary quality, but from PR as a whole!)

I did what you were doing at first, too. And my limits were where yours are. Almost exactly, except my Point of No Return was about 20 minutes of activity. Fifteen I was okay with. I tried going forward and back, forward and back, doing something I did not know was GET or its cousin. No matter how many times I retreated to fifteen minutes of activity, when I started inching up again, I experienced the same symptoms at the same timeframe. I did this with three crashes over a period of two weeks before I admitted to myself I wasn't getting anywhere, and stopped.

For me, the key to doing better has been pacing myself. When I have extra energy, I do a bit more. When I run out of energy (often suddenly and seemingly inexplicably) I sit down or lie down. Immediately.

When you feel good, be (gently!) active, checking in on your body and what it's telling you often. When you begin to feel crappy (read 'exhausted, overstimulated or both'), that's it - you've got to sit down, and it has to happen in the next minute or two. Really crappy? Bed. Now. No, you can't 'just' do this or that one more thing that you find super-important in the moment. You have to stop when your body tells you to stop. For me, this was the hardest lesson. I'd be puttering about my apartment, baking, and be all "whoops - that's it" and have to put the dry ingredients in a Ziplock and go lie down. I've finally trained my pride to accept that this is the way it's gotta be. I've done the same with close friends, explaining that sometimes on an outing I will have to leave suddenly.

I quit my job that had me running around like a mad person and got a job that's online, where I can log in whenever I have the energy to do so, and can dictate to my phone if I have a really truly terrible day. I've admitted I'm an utter slave to my body's needs - my physical being owns me, moreso than it seems to for other people, and that's the way things are right now.

You may have adrenal issues as well as ME (or ME may be partially due to adrenal issues). Regardless you need to start looking at how to best look after yourself, and please stop trying to 'exercise yourself well'.

A note to those from other countries - in the US of A when we say adrenal insufficiency, we are referring to the entire HPA axis: problems at the hypo, pit, or adrenals. Don't ask me why, I didn't coin it!

I have a blog about my ME experience which includes OTC supplements that I use. Good luck!

-J

 

[SDSue]

Ah, @SDSue! If only we'd known.

(And 5 years ago, I was still healthy. Pumping iron 3 days per week, running most mornings and whenever else I felt like it, partying, full time school... How things have changed!)

5 years ago, I was training for a marathon and planning a trip to Bhutan. (in between what I later learned to be severe crashes) Let’s just say the denial was pretty firmly entrenched - I simply didn’t know how to live life at anything other than full speed ahead. Now live at about 20%. Hindsight isn't 20/20, it’s x-ray vision!

 

[Bansaw]

I did what you were doing at first, too. And my limits were where yours are. Almost exactly, except my Point of No Return was about 20 minutes of activity. Fifteen I was okay with. -J

Thanks J, appreciate that. I have already made a decision to cut right back to just a few minutes of stretching and very analeptic exercise, to the point where I gauge if I have any reaction whatsoever. I'll have to get myself back on some adrenal support as my adrenals were tested very low.
Yes, its hard to accept that you need to cut back a bit. I was a decent soccer player and people were surprised at my speed and agility, and ultimate frisbee player too, as well as working out with weights etc. It looks I will have to be wise to get some of that energy back.
At his point, I am aiming at getting my gut absorbing well (trying Miryasian and RS, kefir grains, HCl, Zypan etc) and getting the nutrients I need. Then I can look at what I can do in terms of exercise. But, right now, I've learned something through this thread and its that I do need to cut back to give myself a decent chance of getting restored.[/user]

 

[jeff_w]

@Bansaw - I think @JaimeS has some great advice above: Never stop listening to your body, and be sure to respect what it's telling you (even when it's telling you something you don't want to hear!).

I do have a differing opinion on the following though:

When you begin to feel crappy (read 'exhausted, overstimulated or both'), that's it - you've got to sit down...

I'd go a bit farther than this. I've learned to stop doing activity before I begin to feel crappy. If I begin to feel bad/tired/sick, then I know I have done too much. This philosophy of "never making myself feel worse" has increased my baseline functioning.

Really crappy? Bed. Now. No, you can't 'just' do this or that one more thing that you find super-important in the moment. You have to stop when your body tells you to stop.

Completely agree.

Again, the only thing I'd add to the important information that @JaimeS has shared is that it's best to stop an activity before you begin to feel any signs of declining, not after.

 

[JaimeS]

@jeff_w ,

I want to be as active as I reasonably can be. My range of acceptable activity varies so wildly day-to-day that if I aimed for the lowest level of activity that had ever made me feel ill, I would find my life a lot smaller, darker, and less interesting.

That said, when I say that I stop when I feel crappy, I don't stop when I start to feel sick - my body gives me other signals that tell me a storm is coming.

This is a useful exercise for me, so if you'll bear with me:

Body means - "you're tiring"

• Cooler hands and feet
• Forgetting what you were doing in the middle of a task
• Bulging veins (in warm weather, anyhow)
• Frequent sighing shows oxygen needs aren't being met

Body means - "you're too tired"

• The sensation that my head / neck is quite warm, but my hands and feet are uncomfortably cool
  
• Increased shakiness
• Losing a familiar word
• Forgetting what you were doing
• Requires a hand to steady myself when standing or sitting
  
• Edge of nausea
• Tachycardia

Body means - "CRASH POSITIONS"

• Full-body chill that sweeps through suddenly, leaving hair on end, skin tingling (from tests I've had, this feels just like hydrocortisone, so it's probably my cortisol getting ready to try and save me)
• Dizziness requires trailing a hand on furniture, or requires support
• Muscle spasm
  
• Shaking
• Losing more than one familiar word over the course of a quick conversation
• Body parts going tingling
• The sensation that my head / neck is quite warm, but my hands and feet are freezing - febrile

This is all before the actual crash that occurs if you get into 'crash position'.

If I pay attention to my body, I can stop at the first stage, rest a bit and/or address the issue with supplements, and then continue what I was doing without further issues. The newly-diagnosed get to the CRASH POSITIONS position more often because they ignore the early signs, which they classify as "not that bad"... because they're not. But people who have been in this boat longer know that if you try and 'push through' those symptoms, they grow worse.

-J

 

[SOC]

Thanks, this is precisely the reason why I am here, and am under a very good doctor now and did spend over $1,000 seeing the respected Dr.Lapp a few months ago. I am taking it very seriously.

Then I suggest you talk to Dr Lapp about your current exercise program. Did you have a CPET test when you saw him? If so, are you using the results to guide your exercise/activity?

When I saw Dr Lapp many years ago, I was not severely impaired. Even so, he did not recommend the kind of exercise you are doing now. I cannot imagine his position has changed that much over the years. I find it hard to believe that he would be supportive of an aerobic exercise program that is causing you PEM.

If you are taking this very seriously, and respect Dr Lapp, then get his advice on exercise ASAP. My guess is that he will support you doing some kind of exercise, but not 15-30 minutes of aerobic exercise.

Other members have already been very clear with you about the consequences of the type of exercise program you are proposing. I won't rehash it further other than to plead with you to listen to the voice of experience -- that of your fellow patients, that of our experienced ME/CFS specialists, and that of the exercise physiologists who study ME/CFS. Engaging in aerobic exercise when you have ME/CFS is playing with fire.

You're a senior member. You've been here quite a while. Reread, if you must, the many stories of people here at PR who tried to exercise the way you are and caused themselves irreparable harm. This is not a club you want to join. Be grateful for the degree of function you still have. Treasure it. It is a gift many of us would give almost anything to have back.

 

[Hip]

Thanks, - I was encouraged by this thread. I am now looking into some adrenal support and BCAAs, glutamine to help here. I definately want to work out daily, but might limit myself to very light elliptical trainer, a few weights and stretching,-analeptic.

In addition to BCAA, you might also want to try the sodium bicarbonate and catalase PEM-busters detailed on this thread.

And this thread details how creatine supplementation reduced PEM.

High doses of Q10 have also been helpful in reducing PEM, @SOC reported.

If you try these various supplements that are reported to have reduced/eliminated PEM and crashing, please let us know how you get along with them.

More "PEM Busters" in this thread.

 

[Mij]

No M.E doctor would recommend taking supplements to prevent PEM from exercising, their advice to prevent PEM would be to stop exercising and learn how to pace yourself and get adequate rest between activities. Learn your energy envelope.

I' don't know what type of ellipical trainer you have, but if you are climbing on it with arm movements then this is way too aerobic (even for 5 minutes)

 

[jeff_w]

No M.E doctor would recommend taking supplements to prevent PEM from exercising, their advice to prevent PEM would be to stop exercising and learn how to pace yourself and get adequate rest between activities. Learn your energy envelope.

Yes.

If an activity gives you PEM, then that's a clear signal that you're too ill to engage in that activity. If you keep giving yourself PEM, you will worsen your health, possibly for years and even permanently.

 

[jeff_w]

Hi, @JaimeS -

Based on what you wrote, you have a high level of ability to read the nuances of your body's signals. That ability can only be an asset with this illness.

I want to be as active as I reasonably can be. My range of acceptable activity varies so wildly day-to-day that if I aimed for the lowest level of activity that had ever made me feel ill, I would find my life a lot smaller, darker, and less interesting.

You and I have different philosophies on this one.

I value placing the least amount of stress on my body as possible. This means being very careful to not trigger symptoms, not even the "early warning" symptoms that you described.

I still find many ways to make my life very enjoyable and meaningful despite this. While I'd love to be healthy, I don't find my life to be "small" or "dark" by any stretch.

If I pay attention to my body, I can stop at the first stage, rest a bit and/or address the issue with supplements, and then continue what I was doing without further issues.

You and I are both pacing responsibly, which is a very good thing. We just draw the line at different places.

The newly-diagnosed get to the CRASH POSITIONS position more often because they ignore the early signs, which they classify as "not that bad"... because they're not. But people who have been in this boat longer know that if you try and 'push through' those symptoms, they grow worse.

Agreed that many of them have no clue how to pace and/or just don't have the willpower to make themselves do it. Unfortunately, many of them end up learning the hard way.

You and I have both modeled valid pacing strategies for @Bansaw.

I'll be very direct here: It's now up to @Bansaw to decide whether or not they are going to listen to others' experiences, take them seriously, and take full responsibility for this illness and protect their health.

 

[Alea Ishikawa]

I'd have to echo what JamBob said, in a way. Exercising while sitting or laying down may make a difference, especially if you have orthostatic issues.

There's not a limit of 30 seconds per day. Rather, they're recommending 30 seconds per repetition set, with around a few minutes rest in between. A short rest can make a difference. Dr. Lapp also recommends rests between short moments of activity, even preparing a meal.



Exercise can help with mood. I do it sometimes for that purpose, but don't always have enough energy to spare. Personally, I would suggest that if you are struggling to take care of basics, then exercise may take lower priority. Showering, preparing microwaved meals, and brushing your teeth might be your exercise. When I was healthier, I used to do on average ~30-50 min/day mostly moderate to heavy exercise. Now, I have to work within my new limits.

Staci Stevens of the Workwell Foundation mentioned one ME/CFS patient who did nothing but walking for a year. That is, she had no other reported activities besides her walking. Her exercise capacity actually dropped on follow-up CPET.




@Bansaw - I'm also a patient of Dr. Lapp's. I wanted to note that the take-home bag includes anti-GET literature. He wrote a note on my summary sheet of "STAY ACTIVE, NOT TO ACTIVE!" My recommended max heartrate is below ~110 bpm, based on estimated anaerobic threshold. My steps are capped at about 2,000 per day; he set this limit after I let him know I was crashing following ~5,000 steps.

Dr. Lapp said to me that if you push when crashing, you'll lengthen the time for recovery. I can't say I agree with the "recovery" part as I think there's another component besides pacing, etc. There's also an extremely low chance of recovery, and some who do "recover" end up relapsing later. But I know from personal experience continuing to push results in more/harder crashing. Adequate rest is necessary to get back to "illness baseline."

There's lots of information on PR. In fact, I had already tried/was taking every supplement Dr. Lapp recommended before I saw him (minus salt/water increase) because of PR.

 

[Mij]

I value placing the least amount of stress on my body as possible. This means being very careful to not trigger symptoms, not even the "early warning" symptoms that you described.

Yes and many of us did not have any warning signs, in fact we might even start feeling great once we get into the workout! This is actually how my PEM started 5-6yrs into the illness. I couldn't understand why I felt like I was dying 18hrs after the workout.

 

[JaimeS]

@Mij and @jeff_w are right - I totally forgot about people who experience delayed PEM, because, while I've had delayed PEM, it's super-rare for me. However, that's not the way it works for everyone. Someone who typically gets delayed PEM could push themselves too far, too fast using my method. My adrenal/electrolyte crash apparently Waits for No Man.

I have a fitbit, but after I'd used it a few days I came to realize how useless it was for me. When I approached 5000 steps, I had mild to moderate PEM, so I know that's the case, now. But another day, I had mild PEM symptoms (the 'you're tiring' symptoms) at 2500 steps. Another day, I only began to experience those symptoms at 3500 steps. The fitbit wasn't the kind that measured HR or BP, which would probably be far more useful. But the lesson I took from this was that the number of steps I can take before experiencing symptoms varies day-to-day. I'd like to use that energy when it's available without coming with a crash!

I still find many ways to make my life very enjoyable and meaningful despite this. While I'd love to be healthy, I don't find my life to be "small" or "dark" by any stretch.

Jeff_W, I feel I've done you a disservice - I only meant to imply that I value my own, personal activity level, and would be sorrowful to see it shrink further, not to say anything about anyone else's activity level and what it means about their lives! I realize now how that statement could have been taken, though, and I apologize.

It's now up to @Bansaw to decide whether or not they are going to listen to others' experiences, take them seriously, and take full responsibility for this illness and protect their health.

It's so hard, though. PEM is so counter-intuitive. Even people who are naturally gentle with themselves can't help but think that if they're just slow and careful enough, they'll get back to their previous activity level... because this has been true for the majority of other illnesses they've had or heard of. This is compounded by news of the rare person who actually does recover - I just learned that a very old friend developed adult mono and then was ill for four months after her doc pronounced the mono gone, and she had the active infection for two. (She described PEM at length without knowing what it was). I think she'll always have mild PEM if she pushes too hard, but she is 85% back to her old self; something allowed her to recover. (Probably the ridiculous amount of IV antibiotics she took - she always was of the Kill It With Fire school of pharmacotherapy.) These isolated stories can give people hope - which is good - but also make them think that so long as they do the 'right' thing, they'll recover too, ignoring genetics and initial insult, etc.

(Please don't say 'if she recovered, then she never really had CFS or ME'; that's the No True Scotsman Fallacy. I'm aware that some definitions say "for six months or more", but from what she said, it was hard to tell exactly where the active infection ended and the post-viral fatigue began.)

I wonder if people tend to have 'healthy' thresholds that are about 2/5 to 1/2 of their crash-level activity. I crashed at 22 minutes of exercise, and 10 made me feel pretty good. If I upped to 15 I was still okay, but would experience my "minor" symptoms and, if done two days in a row, a few of the moderate ones.

I know we strongly resist universals, but has anyone other than me and @Alea Ishikawa's conversation with Lapp demonstrated this to be true for them? This might help us give rough guidelines to newbies.

-J

 

[Strawberry]

@jeff_w ,

Body means - "you're tiring"

• Cooler hands and feet
• Forgetting what you were doing in the middle of a task
• Bulging veins (in warm weather, anyhow)
• Frequent sighing shows oxygen needs aren't being met

Body means - "you're too tired"

• The sensation that my head / neck is quite warm, but my hands and feet are uncomfortably cool
  
• Increased shakiness
• Losing a familiar word
• Forgetting what you were doing
• Requires a hand to steady myself when standing or sitting
  
• Edge of nausea
• Tachycardia

Body means - "CRASH POSITIONS"

• Full-body chill that sweeps through suddenly, leaving hair on end, skin tingling (from tests I've had, this feels just like hydrocortisone, so it's probably my cortisol getting ready to try and save me)
• Dizziness requires trailing a hand on furniture, or requires support
• Muscle spasm
  
• Shaking
• Losing more than one familiar word over the course of a quick conversation
• Body parts going tingling
• The sensation that my head / neck is quite warm, but my hands and feet are freezing - febrile

This is all before the actual crash that occurs if you get into 'crash position'.

-J

This is golden advice. So far all I recognize is numb hands and feet as a warning. And I only figured THAT out in the last few weeks. I have much to learn still.