Compression Garments

Barry said:
Sounds like you may be similar to my wife @Keela Too. We have a lovely dog, and my wife does something similar with her. My wife cannot run nor can she walk as fast as would be helpful, but she gets a real buzz from it. It is also clear that her waning energy has another problem, trying to think ahead of our dog, which is important, but challenging even for a fit person.

More generally, we have realised that my wife can potter along doing stuff for quite a long time - hours sometimes - but only if what she is doing involves short breaks, even if just very short but lots of them. So constant walking soon becomes unsustainable, but if stopping often to take photos, then can go further and longer. Or doing her gardening, which is a real passion for her - people who don't understand would just see someone beavering away in their garden for quite a long time. In reality the workflow of gardening, by its nature, includes short low-energy breaks between the higher energy bits, and can be tailored accordingly anyway. She invariably pays for it later, but knows the trade-off and is the choice she makes.

I'm sure that when ME/CFS is better understood, there will be a mode identified for some where short/frequent energy recharge periods help maintain a modest but viable average power availability that allows such an activity pattern.
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That fits the Workwell findings very well. They are looking at how to do things while not triggering the broken respiration systems. I like that it is the closest we have to a treatment.

I have managed to walk much further by doing small bits then resting. By further I mean getting to the kitchen or getting to the garden bench outside the door. What a difference it has made to life.
 
Mithriel said:
That fits the Workwell findings very well. They are looking at how to do things while not triggering the broken respiration systems. I like that it is the closest we have to a treatment.

I have managed to walk much further by doing small bits then resting. By further I mean getting to the kitchen or getting to the garden bench outside the door. What a difference it has made to life.
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That's interesting. I'm sure there's a clue in here somewhere.
 
Oh my goodness! This abdominal binder is a game changer!!!

Sure, its not the most comfortable thing, but today I did agility with my dogs and didn’t get that horrid tunnel vision, drunk, woosey feeling as I finished. Indeed I was able to speak almost immediately on completion of my rounds, and had no need to put my head between my knees today. Not even once!

Good friends commented on my improved colour (now they tell me that usually I look ashen as I exit the ring :rolleyes:) and on top of all that I noticed my concentration holding out longer.

So I wore a lot of compression - socks, leggings and the abdominal binder.

I bought this one from Amazon & just for good measure left the additional hernia pad in place too!
https://www.amazon.co.uk/dp/B07SQNNN1M/
 
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LisaG said:
I also sleep with my head raised
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I tried sleeping with my head raised because of GERD and I found that I couldn't sleep like this. It gave me really bad back and leg pain and I'd be awake most of the night. I also tried using a GERD pillow but that was just as bad as raising the head of my bed.
 
strategist said:
I wonder if corsets might have started out as medical treatment for POTS (before becoming fashionable). I read that corsets were causing women to faint but maybe that's a misinterpretation and the women were wearing corsets because it helped with orthostatic intolerance which was the true cause of the fainting.
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I wonder if the corsets caused women to faint because they were wearing them much too tight??
 
TigerLilea said:
I wonder if the corsets caused women to faint because they were wearing them much too tight??
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Wouldn't be surprised. I think the fashion during some periods meant someone used to wind the cords in very tight, effectively winching their waistline in far smaller than nature intended. Organs must have been getting unnaturally and significantly displaced I imagine - heaven knows what that did to lungs, heart, diaphragm etc.
 
I don't have POTS, I just get blood pooling in my legs if I have to stand for more than a few seconds, which causes horrible nausea and lightheadedness.

I wear grade 1 compression stockings if I have to do something unusual such as a long journey, but I always wear compression shorts to help with lipoedema pain. If anyone's looking for gentle, comfortable abdominal compression that is nevertheless enough to make a difference, maybe look at a British company called Comfizz, which mostly designs garments to help people with hernias and who wear stoma bags.

My consultant recommended their cycle-style shorts, which have a very high waist and are especially good for people with lipoedema because they mildly compress the upper legs and bottom, which tend to be the most painful areas of fat. They're great for that, but also help me generally with orthostatic intolerance without making my abdomen feel squashed. I've got so used to wearing the shorts that I can sleep in them, and they didn't even bother me during the hot weather.
 
Trish said:
I was thinking more of the sort of corsets my mum was still wearing in the 1950's that just compressed the abdomen from the waist down. I agree the ones that compressed ribs and right up to the bust were a bad idea, as you can't do proper diaphragmatic breathing, and probably shallow breathing led to fainting.
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I had forgotten the corsets of the 50s. My gran referred to them as her stays and it was a fearsome garment! The playtex girdle was a great improvement :)
 
So this weekend, when competing my dogs, I fitted my “corset” a little more snugly.

And my head was even clearer!

My dogs noticed the difference too, because I was able to give them their cues more accurately. It showed in our placings too. :)

It’s really interesting that something so apparently simple can make such a difference.

Just wish this wasn’t the end of the agility season now. :P
 
Several posts moved from BBC Science Focus Magazine: What is brain fog? A neuroscientist reveals what causes it and how to get rid of it



JemPD said:
Sally I'd be most interested to know the brand/type of abdominal & leggings you use? If you wouldnt mind sharing? My fog is noticeably worse when I'm standing/sitting with feet on floor so i'm intrigued to try this on the off chance it might help me too.
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Ah! Now I’m not sure what brand the the socks are. I bought a few varieties.
I can’t see the ones I’m using online, but they came in a pack of 6 or so, and have coloured stripes on them. They cover to just below the knee, and also compress the foot a bit. They are very synthetic feeling, so I wear thin cotton socks over them so my feet don’t slide around in my wellies.

The leggings are from Sundried. They look like these ones, which I think are the same, but they don’t now seem to be advertised as “compression leggings”. Anyway, I like them, and they’ve stood up to some use. I have other pairs, that are tighter on the legs, but don’t come as high at the waist.

I usually wear another pair of light trousers over the top, as tight clothing doesn’t keep any heat in!

https://www.amazon.co.uk/Leggings-Portugal-Designer-Training-Sundried/dp/B01MRD8JP3/
 
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Thanks @Trish & thanks @Keela Too thats helpful ive ordered some.
i always wear thermal leggings under fleece trousers during winter because my legs get so ludicrously cold, so i'll try these & explore tighter ones.

Interestingly (sorry to keep us OffTopic) I had to wear a back brace for a short while last year & i loved wearing it, but i couldnt really put my finger on why, it was definitely compressive like a girdle but they told me to stop wearing it after a while because i dont want my core muscles to get weaker through lack of use
 
JemPD said:
Interestingly (sorry to keep us OffTopic) I had to wear a back brace for a short while last year & i loved wearing it, but i couldnt really put my finger on why, it was definitely compressive like a girdle but they told me to stop wearing it after a while because i dont want my core muscles to get weaker through lack of use
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Interesting. On a similar note I always tend to sit with one leg bent up, so even at the kitchen table I will pull one foot onto the chair, and sort of hug my knee. (Well okay not when eating, cos that would look rude, but as soon as we’re drinking a cuppa afterwards, and I think it might be okay. Or I bend my knee and sort of sit on the calf of the bent leg, if I want it to be less obvious).

I think this is similar - a subconcious realisation that I can stay more compis mentis if my blood doesn’t all fall to my feet! LOL.

Given how this helps us to think better, I’m not sure it’s entirely off topic for this thread. ;)
 
Keela Too said:
Interesting. On a similar note I always tend to sit with one leg bent up, so even at the kitchen table I will pull one foot onto the chair, and sort of hug my knee. (Well okay not when eating, cos that would look rude, but as soon as we’re drinking a cuppa afterwards, and I think it might be okay. Or I bend my knee and sort of sit on the calf of the bent leg, if I want it to be less obvious).

I think this is similar - a subconcious realisation that I can stay more compis mentis if my blood doesn’t all fall to my feet! LOL.

Given how this helps us to think better, I’m not sure it’s entirely off topic for this thread. ;)
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Agreed - often hear talk of counter manoeuvres that people have subconsciously adopted before even knowing they have OI.

I've personally always scrunched/folded my toes under my feet, presumably keeping calf muscles tense to aid venous return - usually bullied mercilessly for it!! :angelic:
 
Thanks for the ideas on Compression garments.

Since about 2015, my daughter always sits with her feet on a stool when we are at home. So that's obviously a fair amount of time.

She has occasional "headrush" feeling, when standing up, but never fainted. However after chatting to a couple of people with ME a few years ago, who had both had significant improvement in the amount they could do, having been prescribed fludrocortisone, we have been pursuing this.

Fortunately she had initial tests in 2019. Her cardiologist describes her as a "little bit POTSie". Further testing shows some small fibre neuropathy, so Dr Gall is arranging an appointment with an arrythmia nurse, so that she can trial midodrine. Just got a date for this, which is a phone consult in late April 2022!
 
I am confused!:
I can well believe that abdominal compression is a help. (I got a thing called a ‘waist trainer’ a couple of years ago. They seem to be big thing in the beauty self-image community. It is not uncomfortable at all, once on but it is exhausting to put on, so I seldom do it.) I had had surgery for a multiple infection in abdominal cavity 2 years ago, and since then, I look as though I had a false pregnancy (I am very thin so the belly is conspicuous if sticks out.

Anyway: I have pretty Severe ME, OI, and now I have Black Feet below ankles my blood has pooled so badly. When I had normal varicose vein problems, Doctors always talked about compression stockings. The bad vein problems seem to have now sunk down to my feet.

I found the compression leg gear torture to wear, impossible to get on, and I thought that they must be stopping adequate circulation.
Does anyone agree with this - or is it hypochondria??

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I am mainly bedbound and would be so full time, but ideally with brief healthy walks around my lawn… but I am just too tired after being ‘independent’ (which is supposed to be so great).

I have to do housekeeping, like most of us with ME. It takes me a whole day to do the absolute minimum, interspersed with periods of being horizontal.

But if the ab compression could help with OI and crashing after tiny tasks, it would be worth it. Would Amazon be the better way to go?

Apologies for writing so much…
 
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