Share Your Experience: Types of Exercise That Work With ME / CFS?

[taniaaust1]

This whole athlete gene thing is interesting. I was a gymnast and a sprinter, but no matter how hard I trained -- and I trained A LOT -- I was never able to develop the stamina necessary for any kind of distance running. This might explain that. @taniaaust1, what gene is that? I'd love to look it up in my 23andme results.

Did u get your 23andME stuff done before they restricted everything? If you got tested before the restrictions, your result for this should be that long list of strange things which you tell you if you have certain genes for things or or not eg things like do you have ear wiggle gene, or the tongue roll gene and stuff like that. (I assume we still have access to that and they havent gone and removed stuff they previously gave us).

Im trying to load 23andME on my crappy computer but cant currently get the site up to check out what that gene is called. I'll try it again another time another day if noone else posts here what it is as Im sure they are people here interested in this who want to see if they have it or not, who may of gone throu 23andME after they cut back on their reports.

 

[ahmo]

@taniaaust1

I personally would never try to exercise in the morning as then after that session you then have all your daily activities on top..

My daily activities are of the most minimalist kind. I go out to do my shopping once a week. The main activity in my life over the past 5 months has been coffee enemas, 4 days on and 2 days off. Now that I've completed some major detox, I've got about 4 hours of unaccounted-for time. It remains to be seen what will fill this vacuum. cheers, ahmo

 

[SOC]

Did u get your 23andME stuff done before they restricted everything? If you got tested before the restrictions, your result for this should be that long list of strange things which you tell you if you have certain genes for things or or not eg things like do you have ear wiggle gene, or the tongue roll gene and stuff like that. (I assume we still have access to that and they havent gone and removed stuff they previously gave us).

Im trying to load 23andME on my crappy computer but cant currently get the site up to check out what that gene is called. I'll try it again another time another day if noone else posts here what it is as Im sure they are people here interested in this who want to see if they have it or not, who may of gone throu 23andME after they cut back on their reports.

I looked in the Traits section, but I don't see anything about athletic performance. I had my test done just before they started restricting information. At that point they had stopped testing for some genes. Maybe that is one of them.

Oh, wait! Is it Muscle Performance? Mine says "Likely Sprinter". I'm CC for the ACTN3 gene (as far as I can tell). So, yeah, that fits -- I'm a sprinter.

 

[taniaaust1]

I have a similar story. I carried in eight heavy water bottles from the front door to the kitchen, and in total this created about two minutes of continuous activity. That alone was enough to set off muscle burn in the arms for two days, and it even gave me some abnormal breathing..

Your comment got me thinking about length of time my arms left if Im holding up something weighty continuously as in trying to move a lightish cupboard with the help of another. I can carry something like that from one room to the next but probably no further at a time then that without having to put the object down and rest for a minute (due to severe pain coming in then in my muscles and I just cant hold it more or I'd drop it). On the second pick up of an object, my stamina, the time I can hold it for is shortened.

This thought has helped me compare it to my previous run times.. and I think my arms must have the same kind of length of time for stamina or whatever calls it, as my legs do when running fast. So many seconds 30-40 seconds?. my case there is no way I could hold something heavy for that long as 2 mins. My arms go into pain quite quick and I'd drop something (my body starts shaking too) long before I reached the 1min point.

So what puts the individual caps onto each of us for the amount of time we can do something like run or be carrying heavy object.. I wish they'd study that thing. If they could measure that and how it functions.. maybe they could accurately predict just how little we can exercise.

 

[taniaaust1]

Oh, wait! Is it Muscle Performance? Mine says "Likely Sprinter". I'm CC for the ACTN3 gene (as far as I can tell).

yeah that's it.. its a bonus not just for sprinting but in strength building too.. stamina if Im remembering correctly. They also "had" (they probably have been made to take it down) an article at 23andME about it and athletes. (unless there was more then one gene). Im good WELL WAS I should say, at endurance sports.

 

[taniaaust1]

@taniaaust1
My daily activities are of the most minimalist kind. I go out to do my shopping once a week. The main activity in my life over the past 5 months has been coffee enemas, 4 days on and 2 days off. Now that I've completed some major detox, I've got about 4 hours of unaccounted-for time. It remains to be seen what will fill this vacuum. cheers, ahmo

I hope you build up slow and dont just suddenly put 4 hrs of activity more strenuous to what you were doing, into your day.

 

[Valentijn]

For an "average" person, how much of the walking activity is aerobic when pulse is at 110 or lower?

None, I think. But it also sounds like there should be little or no increase in heart rate over resting rate if walking quite slowly on flat terrain.

Though I'm not sure how that's relevant, since we almost never have the heart rate or response of a normal person?

 

[ahmo]

@taniaaust1

I hope you build up slow and don't just suddenly put 4 hrs of activity more strenuous to what you were doing, into your day.

Strenuous is not part of my vocabulary. The most taxxing thing I might undertake now that my arms don't hurt, is to learn to play the ukulele I bought last year.

 

[Valentijn]

Oh, wait! Is it Muscle Performance? Mine says "Likely Sprinter". I'm CC for the ACTN3 gene (as far as I can tell). So, yeah, that fits -- I'm a sprinter.

Interesting stuff! I'm TT for rs1815739, so I completely lack actinin alpha-3 (ACTN3) as does about 15% of the population. It sounds like the theory is that ACTN3 protects fast-twitch muscle fibers, so people without it generally suck at sprinting. But the lack of it also means that muscles do a "better" job of being damaged by exercise, and can therefore bulk up more.

Based on the data I have for 12 ME patients, we have about the same amount of CC, CT, and TT as the "controls". Though it is perhaps noteworthy that the muscles of TT people use more oxygen.

 

[Artstu]

Hi Artstu, when you were at your worst with CFS, what specific symptoms did you have after this kind of exercise?

The exercise you describe is strongly aerobic, with occasional spurts of anaerobic, and there is no way someone with fully developed CFS could do that. That would lead to punishing muscle fatigue, acid burning, general weakness, mental fog, etc, sometimes for days after the exercise.

I didn't do exercise like that when I was at my worst. I was about 4 years into illness before I tried.

The cold temperatures of winter, are the key factor for me, I produce far more power in the cold, and recovery is much quicker. Every winter is the same, sub zero temperatures are best, we didn't get many this winter though.

I get all those effects, it just seems that they're to a lesser degree than most on here. When I recovered I just did it again and again, but as I say the cold temperature is the key for me. Summer is more low key, but probably 70% of max on the e-bike, I need to check to be sure. I have a lot of variability day to day week to week. I decline through summer, then rebuild ground in winter on a repeating yearly cycle.

 

[justy]

It's interesting that you don't feel the muscle weakness but instead just get the neurological part. Do you have high inflammation markers like hscrp and homocysteine? It almost makes me wonder if what you are experiencing is CFS.

Part of exercise is to produce inflammation in muscles you stress. It is the repair of that inflammation that makes you stronger. Maybe in your case the inflammation in muscles is starting some cascade of other inflammatory events that end up cause some neurological inflammation or side effect?

I definitely have the delayed reactions you refer to. Typically for me after exercise day one involves the muscle burn, and day two involves general sense of malaise, problems sleeping, problems breathing (forced deep respiration to get rid of acid from the blood). I'm getting better at not doing the things that would extend me out to three days.

I do get Muscle weakness, but not muscle pain that you describe.
Yes you are correct I do not have CFS - I have M.E .

I recently saw KDM and he said that most of my symptoms were probably being caused by inflammation - he also noted It looks like I have quite a lot of brain inflammation - to the point it is causing small seizures, which he hopes will be reversible with treatment.

 

[xchocoholic]

I havent heard that before, thanks interesting. Im not sure thou if that suits all of us. If I havent done too much, Im basically healthy at rest (well layin rest due to OI sitting can be a strain on me) other then my memory issues which are always there and some IBS-C which is always there to various degrees.

I doubt very very much thou with even being healthy at rest that I could push, I know I still crash very severely when I push.

Yeh, I've been healthy at rest since 2008 but never reached the level of activity I am now by chewing caffeine pills and dextrose tablets and drinking xxx vitamin water. Kow.

I only pushed from Feb to April 2014 so far. A uti/stone nailed me only I thought it was a cfs crash for a month. Duh !

I'm a celiac so I'm supposed to heal but that doesn't take into account all the other dx celiacs can have. Elisabeth Hassellbeck probably explains this in her book. Dr Myhill has info on caffeine.

Caffeine in drinks never worked as well. It could be all the other chemicals in those interfered. I think coffee has 1000's of chemicals.

I tried the caffeine pills because caffeine stops drowsiness and I know I respond best to taking any med via chewing it. Or letting it work in my mouth.
I use children's liquid Benadryl, etc for this reason.

It's exciting to find a way to avoid my normal pem. And I'm actually getting a lot done. I finished my planters yesterday.

Tc .. x

 

[manna]

i found tai chi helpfull. should be said that was in a group situation and not alone. alone i might do some polarity yoga. best to keep limber and supple though experience has shown me not to walk, exert or do aerobic in any way.

 

[Mij]

I looked in the Traits section, but I don't see anything about athletic performance. I had my test done just before they started restricting information. At that point they had stopped testing for some genes. Maybe that is one of them.

Oh, wait! Is it Muscle Performance? Mine says "Likely Sprinter". I'm CC for the ACTN3 gene (as far as I can tell). So, yeah, that fits -- I'm a sprinter.

That's really interesting. I would have liked to have those tests done. I was a long distance runner.

 

[pemone]

I do get Muscle weakness, but not muscle pain that you describe.
Yes you are correct I do not have CFS - I have M.E .

I recently saw KDM and he said that most of my symptoms were probably being caused by inflammation - he also noted It looks like I have quite a lot of brain inflammation - to the point it is causing small seizures, which he hopes will be reversible with treatment.

What are you values for hscrp and homocysteine?

Did they try to measure brain inflammation any specific way? I think Cyrex has a brain autoimmune test.

 

[justy]

What are you values for hscrp and homocysteine?

Did they try to measure brain inflammation any specific way? I think Cyrex has a brain autoimmune test.

No idea on the first question - I don't think thy have ever been tested. No brain inflammation has not been tested - he was going on symptoms - I am still waiting for test results from him.

 

[snowathlete]

@pone - the key aspect to walking or any other activity (not necessarily exercise) is that we keep a close eye on heart rate. Most of us need to keep it under 110 or so, and many can hit that just by sitting up or standing. Hence even a slow walk would be grossly excessive for some.

This is something i am thinking of trying. Not sure what my resting heart beat is at the moment, but probably not much room before I hit 110. I have to do something I think as I have recently, the last week or two, started getting lots of pain in my legs upon standing. Right at the tops of my thighs, in both legs. It may be that this is hereditary spastic paraplegia (which I might have, not sure yet, waiting for a neurology appointment) as that may cause these sorts of symptoms, but it may also just be that through lack of movement and exercise for years they are begining to really seize up. I'm going to start with stretching I think, that alone might increase my heartrate quite a bit I think.

 

[Valentijn]

This is something i am thinking of trying. Not sure what my resting heart beat is at the moment, but probably not much room before I hit 110. I have to do something I think as I have recently, the last week or two, started getting lots of pain in my legs upon standing. Right at the tops of my thighs, in both legs. It may be that this is hereditary spastic paraplegia (which I might have, not sure yet, waiting for a neurology appointment) as that may cause these sorts of symptoms, but it may also just be that through lack of movement and exercise for years they are begining to really seize up. I'm going to start with stretching I think, that alone might increase my heartrate quite a bit I think.

Doing your stretches while laying down would probably help a lot in keeping heart rate low. Magnesium and/or potassium can also help if you're getting cramping or twitching.

 

[pemone]

No idea on the first question - I don't think thy have ever been tested. No brain inflammation has not been tested - he was going on symptoms - I am still waiting for test results from him.

I think it is really important to not self diagnose things like inflammation, without checking the clinical markers of those things. A lot of naturopaths can take you down the road to hell trying to sell you on the idea that you have inflammation, and then you test and the traditional markers for those things can sometimes tell you that you don't have that at all. Or there can be weird variations on the theme. In my case, my hscrp is near zero (suggesting no inflammation), but my homocysteine is elevated. That might be a genetic methylation defect, so I need to get genetic testing.

In any case, you want to spend time fighting the problems you actually have, and not guessing about those. Inflammation is one of those really key issues you need to get right. The things that can be checked:

* Leaky gut, which Cyrex has a good test for by looking for LPS byproducts from bacteria in the blood

* hscrp, homocysteine, and sedimentation rate, which are all traditional clinical markers. If your doctor never ordered those, I have to ask what kind of doctor is that?

* autoimmune tests, such as Cyrex tests for food sensitivity, chemical sensitivity, and blood brain barrier autoimmune markers

Maybe others can suggest other tests for inflammation.

 

[justy]

I think it is really important to not self diagnose things like inflammation, without checking the clinical markers of those things. A lot of naturopaths can take you down the road to hell trying to sell you on the idea that you have inflammation, and then you test and the traditional markers for those things can sometimes tell you that you don't have that at all. Or there can be weird variations on the theme. In my case, my hscrp is near zero (suggesting no inflammation), but my homocysteine is elevated. That might be a genetic methylation defect, so I need to get genetic testing.

In any case, you want to spend time fighting the problems you actually have, and not guessing about those. Inflammation is one of those really key issues you need to get right. The things that can be checked:

* Leaky gut, which Cyrex has a good test for by looking for LPS byproducts from bacteria in the blood

* hscrp, homocysteine, and sedimentation rate, which are all traditional clinical markers. If your doctor never ordered those, I have to ask what kind of doctor is that?

* autoimmune tests, such as Cyrex tests for food sensitivity, chemical sensitivity, and blood brain barrier autoimmune markers

Maybe others can suggest other tests for inflammation.

Thanks for the suggestions.

I didn't self diagnose - I was told this from a discussion with my specialist M.E doctor - he sees a lot of patients and we discussed my neurological problems which he felt were definitely seizures of some kind - in his long experience these are usually caused by inflammation in the brain.

He has done extensive testing to find the causes underlying my illness - I am not guessing at anything, or self treating.

Just noticed you last question/statement - the kind of Doctor he is is an internationally renowned M.E doctor who helped to write the ICC which I fit exactly. Perhaps we can move on now from casting aspersions on my diagnosis and doctor.