Can you run ? Move quickly ?

[taniaaust1]

I can suddenly run (thou not when Im very bad as Im then too off balance) but the thing is Im burnt out within less then a minute of a sprint and struggling then to even lift my legs (my legs die). I personally think its mitochrondrinal issues and not enough ATP recycling or something like that.

 

[Marlène]

Before I got ill, I ran and biked regularly.
When I crashed, I was in the middle of the street when the light turned red again. Real slow walker! My speech idem dito. As if I hit a invisible wall.
Now I can walk at normal speed a few hundred meters and then 'the engine' refuses. Especially my pelvic tendons hurt a lot and my muscles seem to lack oxygen.

 

[alex3619]

Here is something interesting. Back when I had six hour remissions (mainly around late 90s and early 00s) I had a time when I could mostly just walk before the remission. As soon as my fatigue and other symptoms lifted I could run. I ran for about a mile or two home (I was out seeing a late night movie), though I think I suspect (can't recall) that I might have stopped several times to catch my breath as I was not fit. I enjoyed the run, went to bed and got to sleep easily (no insomnia) and woke up with symptoms again. These remissions never lasted long.

I am not convinced our intrinsic capacity to run is permanently broken, its just that the illness stops us from using it.

 

[JBB]

Here is something interesting. Back when I had six hour remissions (mainly around late 90s and early 00s) I had a time when I could mostly just walk before the remission. As soon as my fatigue and other symptoms lifted I could run. I ran for about a mile or two home (I was out seeing a late night movie), though I think I suspect (can't recall) that I might have stopped several times to catch my breath as I was not fit. I enjoyed the run, went to bed and got to sleep easily (no insomnia) and woke up with symptoms again. These remissions never lasted long.

I am not convinced our intrinsic capacity to run is permanently broken, its just that the illness stops us from using it.

Yes I don't believe there is any irreversible damage either. Just a vicious circle which is keeping us ill, if this can be broken in some way then the cycle is reversed.

I wonder if during remissions one paced very carefully (as if one was still feeling ill) for a few weeks (maybe months) the body may be able to recover. It's hard after so long of not being able to do anything that as soon as we get energy to do something we want to use it. Maybe that energy could be used by the body to heal. Just a thought .

Best wishes,

J

 

[alex3619]

I rested through most of my short remissions, and there was no benefit. Several times these happened when I was out, and so exerting myself. However the real test of pacing in remission would be for those who have really prolonged remissions, and who appear to be in permanent remission. What little follow-up and anecdotal evidence there is suggests that full recovery does not typically occur despite pacing. What happens though is that the condition can stabilize with pacing and it suggests that this way remission can be prolonged or permanent. Many who go back and try to live their normal life relapse, and sometimes relapse badly, but this evidence is all anecdotal.

In my view pacing is not about cure. Its about treatment, about not worsening our condition rather than about improving our condition. Its about how to hold on to our health, not improve it.

 

[determined]

While I have made a lot of progress, and am even working full time, NO WAY can I run or move too quickly. Almost instantaneously, symptoms result.

 

[alex3619]

While I have made a lot of progress, and am even working full time, NO WAY can I run or move too quickly. Almost instantaneously, symptoms result.

Stories of progress are always welcome.

 

[beaker]

I only run in my mind. Sometimes I close my eyes and remember the different courses I used to take--- I was running 3mi/ day when I got sick. I lived near Golden Gate Park. It was wonderful. Run by the buffalos, the tea garden, the lake, by the windmill and out to the ocean.

How did I get here ? I would be happy to be able to take a walk. I have been given such a strange life. I guess we all have.

 

[rosie26]

I so feel the same way about the strange life @beaker . My life is peculiar really. I am lying down all afternoon/evening trying to keep my ME at moderate levels. Just trying to manage it so that I never return back to the severe years. x

 

[alex3619]

I only run in my mind. Sometimes I close my eyes and remember the different courses I used to take--- I was running 3mi/ day when I got sick. I lived near Golden Gate Park. It was wonderful. Run by the buffalos, the tea garden, the lake, by the windmill and out to the ocean.

How did I get here ? I would be happy to be able to take a walk. I have been given such a strange life. I guess we all have.

Many of us love computer games, especially open world role playing games, one of which is Skyrim. One of my friends with ME plays these too, and both of us like to take our avatars out into the country and run and explore for hours.

Of course I might like to do this as a werewolf, as almost nothing messes with a werewolf, but hey ....

 

[aimossy]

To me pacing is about having so much energy, a lesser amount and planning how you expend it. To 'pace yourself' is to not over do it activity wise, preventing a worsening of your problems/condition. It is a management technique that prevents boom and bust. It is a strategy used to help manage something that is difficult that is unable to be fixed. It is a theoretical tool that some people can find helpful in managing their health conditions. Helpful for some but maybe not for others.
It is not a treatment in the context of a 'cure' for something.

 

[jeffrez]

So fatigued I can't even run my mouth anymore. Some say that's a positive effect, tho.

 

[aimossy]

My tolerance fluctuates throughout the day.I have periods of time when I can move quickly still and then periods where im very sluggish/heavy in muscles and brain not to mention other things. However its always bad it just fluctuates in severity level.If I do manage to move quickly or use muscles intensely it doesn't last long. Like 30 seconds or up to a minute of that intense muscle use and they just poop/exhaust or droop out all energy/strength. Its like poof gone....like no more oxygen being fed to things to keep moving.

 

[xchocoholic]

Great responses everyone ! Sadly I can relate to most, if not all, of what you all said.

So we definitely notice an energy shortage / specific muscle weakness in whichever muscles we're using including the brain
but I'm not sure if it's mitochondrial or neurological or both.

This thread reminded me that when I had ataxia, if I didn't us a motorized cart when grocery shopping by the time I got to the second aisle my body began giving me neurological symptoms like right foot drag, heavy legs and arms, and ocular ataxia. I stopped getting these quickly after my ataxia resolved in September 2006. One year post gfcfsf toxin free diet.

The correlation between heavy uncordinated or heavy limbs and ataxia is over my head.

 

[xchocoholic]

As far as OI contributing to this, I noticed in physical therapy that I could simulate running on one of the machines while laying on my back. I still had to go slow but like others said running felt great : )

I keep wanting to pace myself but I don't have a comfortable functional level due to chronic OI/POTS. When I'm upright my whole body is struggling to function.

tc .. x

 

[MeSci]

Many of us love computer games, especially open world role playing games, one of which is Skyrim. One of my friends with ME plays these too, and both of us like to take our avatars out into the country and run and explore for hours.

Of course I might like to do this as a werewolf, as almost nothing messes with a werewolf, but hey ....

There's an inspiring video on CNN about a polio sufferer who 'gets out' by playing computer games. Puts my problems in perspective.

If computer games are too much exertion for some ME sufferers, there are virtual walks, runs and cycle rides they can take on YouTube for example.

 

[MeSci]

To me pacing is about having so much energy, a lesser amount and planning how you expend it. To 'pace yourself' is to not over do it activity wise, preventing a worsening of your problems/condition. It is a management technique that prevents boom and bust. It is a strategy used to help manage something that is difficult that is unable to be fixed. It is a theoretical tool that some people can find helpful in managing their health conditions. Helpful for some but maybe not for others.
It is not a treatment in the context of a 'cure' for something.

No, but it's essential to do while trying other things that might treat the underlying problems. So it can be a necessary part of a treatment, to avoid impeding progress or causing setbacks.

 

[alex3619]

There's an inspiring video on CNN about a polio sufferer who 'gets out' by playing computer games. Puts my problems in perspective.

If computer games are too much exertion for some ME sufferers, there are virtual walks, runs and cycle rides they can take on YouTube for example.

For those who can handle 3D graphics there is also second life. Its not really a game, its a virtual world where many people meet. We have our own support meeting there, and a meditation group.

 

[MeSci]

Great responses everyone ! Sadly I can relate to most, if not all, of what you all said.

So we definitely notice an energy shortage / specific muscle weakness in whichever muscles we're using including the brain
but I'm not sure if it's mitochondrial or neurological or both.

This thread reminded me that when I had ataxia, if I didn't us a motorized cart when grocery shopping by the time I got to the second aisle my body began giving me neurological symptoms like right foot drag, heavy legs and arms, and ocular ataxia. I stopped getting these quickly after my ataxia resolved in September 2006. One year post gfcfsf toxin free diet.

The correlation between heavy uncordinated or heavy limbs and ataxia is over my head.

Neurons have mitochondria, so a neurological problem could be caused by a mitochondrial problem.

Ataxia can have a wide range of causes including nutritional deficiency.

 

[aimossy]

No, but it's essential to do while trying other things that might treat the underlying problems. So it can be a necessary part of a treatment, to avoid impeding progress or causing setbacks.

yes @MeSci absolutely and it is an extremely valuable tool/approach. its funny though some people are so ill it becomes almost redundant.
sometimes people really have to work at it to make themselves do it and some people have no option there condition just forces them to pace.
Pacing in general is a really good thing I just notice like you will and most that its like its claimed to be a cure alongside CBT and GET. which truly GETS up my goat.lol.
i don't usually have a wee about it but i felt the niggle.