Have core strengthening exercises improved your OI?

[Sushi]

I've seen on YouTube those fighter pilots in training doing the muscle-clenching and it clearly works but it's a lot of work - too much energy output.

Yes, it is continual exercise in itself. But if those pilots forget to do their muscle-clenching, they are apt to faint. Not unlike us--though their "crashes" are usually their very last ones!

If you can tolerate them, the tummy thingies are easier but they have to be tight. If you can simply pull them on, they are not tight enough. They need something like zips or hooks and eyes.

 

[SOC]

Yes, that's the theory - most of the blood pools in the abdomen ('splanchic pooling').

I think that may be the main issue here. If you have splanchic pooling, then theoretically strengthening core muscles would help. Unfortunately, for many of us that is not the problem. We have low blood volume or NMH, neither of which (from a logical pov) should be improved by strengthening core muscles. If you've already tried compression corset to little effect, it's likely blood pooling is not your problem and so the exercise won't help. If there's not enough blood volume, there's not enough blood volume. If the neurological signals are messed up, squishing the blood out of your gut isn't going to help there, either.

That said, if you can exercise below your AT and not cause PEM, it might not hurt to try.

Nancy Klimas (and others, I think) recommend that to do strengthening exercises, you do them well below your aerobic threshold and that you do maybe 30 secs (of very slow movement) and then stop for 90 secs. I think the idea is that it's going over your aerobic threshold that causes PEM. That's what all that CPET/VO2-max stuff is about (that's my understanding, at any rate).

That's my understanding as well. I was also told to take HR and BP before getting out of bed in the morning and if they are not normal to take the day off exercising. In other words, if you exercise one day and the next morning your BP is lower or HR is higher (or whatever) then you need to give your body a rest before you exercise more. Or something like that.

I have tried strengthening core muscles on the tiny-bit-at-a-time plan without much success. This is partly because I can't keep it up reliably and do what I need to do otherwise. I'm at my physical limit trying to work from home enough to support my daughter and myself and do my ADLs, so exercising every day is not an option, although I do try the old suck-in-the-gut-and-hold on and off during my daily activities. Not that it seems to have done any good. Sadly, I'm still blobby about the middle. I keep trying, though. Hope springs eternal... but it's not doing anything for my OI.

 

[Seven7]

@Sasha U are explaining well the issue is I think it depends. I do not have bad pooling (I got all the expensive testing) My problem is still there. So I think it depends on the issue w the OI. For me I do better by doing IV than the exercise. If you touch me I am solid rock in the legs, need some work in the trunk but not that bad.

So I think we have to work all areas unless you know what your specific issue is: Pooling (excercise and compression, Blood Volume (IV and salt+ electrolytes), neuropenephrine.... (no idea how this one is treated...)

 

[Sasha]

No chance of getting IV in the UK for this.

Maybe I need some specific testing, then... not sure if I can get it but I can ask.

 

[redaxe]

Hmmm well I was doing a lot of crossfit when I started to come down with CFS/ME. For those that don't know crossfit has a heavy emphasis on short intense workouts that focus heavily on core strength exercises and functional movements.
I don't think it did anything to prevent OI for me in fact exercise in hindsight greatly accelerated my illness. After a extremely heavy workout which was a 20km mud run I reckon I lost about 75% of my stamina. I never felt quite the same after that and anytime I've tried to do any heavy exercise it seems to make things worse.

The Norwegians doctors doing the Rituximab trials have a theory that there could be an autoimmune response against the blood vessel function. I think until we understand why 2/3rds of us respond to Rituximab and what the mechanism of autoimmunity is then it is better to avoid any more than gentle exercise unless you feel like your condition has improved and stabilized. And even then I would go very easy on things.

 

[Sasha]

it is better to avoid any more than gentle exercise unless you feel like your condition has improved and stabilized. And even then I would go very easy on things.

I agree that it's not lack of core muscle tone that causes our OI (otherwise there wouldn't be sudden onset) - just wondering whether there's scope for the toneless like me to get a fractional improvement.

On 'exercise' I think it's crucial to distinguish between sub-aerobic-threshold strengthening and disastrous aerobic 'exercise'.

 

[ukxmrv]

The sub-aerobic strengthening exercise causes PEM for me as well. I was able during the early years of this disease to build muscle mass by repetitive exercises but at the expense of vastly more PEM.

Muscle weakness would increase with each repetition and was long lasting. Pain would be greater in the muscles used. I discovered this during my first graded exercise program.

Here's a snip from Ramsay on ME and muscles

"The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right.

Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles.

In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles."

 

[Sasha]

The sub-aerobic strengthening exercise causes PEM for me as well. I was able during the early years of this disease to build muscle mass by repetitive exercises but at the expense of vastly more PEM.

That's interesting. I wish we had more research on this (by properly qualified exercise physiologists with a deep understanding of ME, that is).

 

[Valentijn]

Nancy Klimas (and others, I think) recommend that to do strengthening exercises, you do them well below your aerobic threshold and that you do maybe 30 secs (of very slow movement) and then stop for 90 secs. I think the idea is that it's going over your aerobic threshold that causes PEM. That's what all that CPET/VO2-max stuff is about (that's my understanding, at any rate).

I think she also explicitly states that the strengthening exercises come at the expense of other activities. Often not an option.

 

[IreneF]

Several years ago, when I was reading up on OI and POTS, I came across a discussion of compression trousers. Apparently they worked to keep the blood flowing to the brain, but no one would wear them. These were probably the kind used by emergency workers for people in shock, not the skins that runners wear.

 

[ahimsa]

I don't normally comment on spelling, but just in case someone is doing a forum search, I thought I'd post.

The blood pooling in the abdomen is called splanchnic pooling, not splanchic pooling. There's an extra N that's missing in the references above.

I notice these things because I like to do crosswords. Having that particular group of consonants in a row, NCHN, is quite rare!

@Sasha, about your original question, sorry, no answer for you. I have not tried any core exercises.

 

[Snookum96]

I've only ever been well enough to do any strength kind of exercise once since I got sick (other than trying to stand on my toes, it helps with calf cramps). My OI was better at that time but I don't know if that was a result of the exercise or if I was only able to exercise because all of my symptoms had improved. Im assuming the latter. My memory kinda sucks these days so I can't really remember.

 

[DeGenesis]

The sub-aerobic strengthening exercise causes PEM for me as well. I was able during the early years of this disease to build muscle mass by repetitive exercises but at the expense of vastly more PEM.

Muscle weakness would increase with each repetition and was long lasting. Pain would be greater in the muscles used. I discovered this during my first graded exercise program.

Here's a snip from Ramsay on ME and muscles

"The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right.

Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles.

In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles."

This information is absolutely heart-breaking.

 

[Hutan]

I did pilates for years prior to getting sick and kept up two 30 minutes sessions per week for the first year of the illness. During that first year, OI and a whole lot of other symptoms got worse. So I'm another data point for core and leg strengthening exercises not improving OI.

I find that if I pull my abdominal muscles together (towards belly button) and pelvic floor muscles up holding briefly (eg in time with slow breathing) 10 times a day while lying in bed that is enough to keep my abdominal muscles feeling fairly solid and working well enough to stop back pain.

My son has impressively hard abdominal muscles; he's very proud of them. I'm not quite sure how he does that lying in bed most of the time; he does occasionally use small weights while lying down. He has bad OI. Another data point.

That quote from Ramsay is really interesting - so he was on to the blurred vision long ago.