Compression Garments

[Liie]

Not at all, I feel quite normal (well, normal for me!). Even when I stand up and get unpleasant OI symptoms, there's no sensation of blood pooling.

Interesting. Thanks! That gives me hope.

It's just that when I wear mild compression I find I can stand and walk better. My cognition improves substantially and I can focus for longer.

That sounds great! I have to try them.

Also, my resting heart rate while lying down is so low so I had to get off bisoprolol and ivabradin because it got too low. And pyridostigmine didn't do anything for me. So compression garments are my next hope.

 

[Kitty]

Yes, that what it sounds like a hassle to me also.

It's only a hassle to wear in hot weather—they're not difficult to put on. Maybe about the same as a Lycra swimsuit or trunks? They don't slide on quite as easily as a pair of normal pants/boxers, but it's not as hard as putting on high-compression flight socks.

I don't know if it'll work for other people, but at least it's not hugely expensive to try.

 

[ScoutB]

I have a strong suspicion that much of my physical fatigue is because I get abnormally tired from being upright for a long time, not the light physical activity in itself.

Same here.

On days where OI is worse my vision does black out more on standing, but it's not so much that I'd be worried about it if there was nothing else wrong with me. I've never fainted. I sort of wonder if my problem involves some sort of protective reflex like that not completely kicking in when it should, because mainly I just get more and more tired, confused, woozy etc. on standing.

I do have a small amount of blood pooling in my toes on bad days as well, where the skin is red and if you press it it turns yellow/white. Maybe very slight swelling that is only noticeable by the way socks leave indents.

It's just that when I wear mild compression I find I can stand and walk better. My cognition improves substantially and I can focus for longer.

Same here. Can't know for sure, but many times I have put on my compression tights and immediately (within a minute or a few minutes) felt much more clearheaded and also like my limbs are lighter. (This is with 'medium' compression of 20-30 mmHg, which might be higher than what other people are using). Longer term effects are harder to track. If I wear them regularly (part of each day) for weeks or months I still have big fluctuations in capacity. It seems possible that there could be some compensation happening (either in blood flow or my behaviour) that is partially cancelling out the benefit. I certainly find myself sitting up straight much more often wearing them.

Speaking of weird behavioural effects. I've been wearing them off and on for about 3 years now, and there's a very distinctive pattern of months/seasons where my symptoms are worse and I find myself willing to put in the effort to wear them, and months where symptoms are better and I get too lazy to bother with them.

 

[Solaris]

I must have a highly unusual manifestation of the condition. I exhibit some classic symptoms of OI, such as dizziness, lightheadedness, and elevated heart rate while standing - sometimes or rarely accompanied by darkening vision and the sensation of nearly passing out without actually fainting - but sitting or lying unfortunately brings minimal relief. I feel profoundly awful no matter what I do (fortunately, I can still walk around without paying too much of a price other than muscle fatigue and maybe a slight deterioration in mental acuity). Compression garments never had much effect upon me that I could perceive, and due to highly sensitive skin that's always bothering me, the last time I wore them I developed a dark red rash around one leg that persisted for weeks. I've had slightly more success with other treatments, but I'm still trying to experiment a bit and disentangle what it all signifies.

 

[Kitty]

and immediately (within a minute or a few minutes) felt much more clearheaded and also like my limbs are lighter....I certainly find myself sitting up straight much more often wearing them.

Exactly the same. Also, the muscles in my legs and backside feel much stronger and as if they work more smoothly. It's enough to change my gait.

The effects are quite hard to describe unless you've felt them.

 

[Liie]

Does anyone know if there is an important difference between the models for typical male and female body shapes?

I'm thinking about getting waist-high leggings-style compression pants. I'm thinking that maybe garments made for typical female body shapes are too broad over the hips for me, and I don't know if that matters.

 

[Kitty]

Does anyone know if there is an important difference between the models for typical male and female body shapes?

I'd go on the manufacturer's recommendations.

Much of the Comfizz range that I buy is unisex, partly because it's not medical grade. Sports gear is more likely to be sex specific, medical compression also.

I only need light compression to get the benefits—tighter isn't more effective, just more uncomfortable. For what it's worth I also find compression garments with a waistband at waist level really uncomfortable.

 

[Liie]

@Kitty, @ScoutB: Just out of curiosity: Have you been able to measure a smaller increase in heart rate with compression garments, in a NASA-lean-test-style ortho-static test?

Edited because I mentioned the wrong person.

 

[Kitty]

Just out of curiosity: Have you been able to measure a smaller increase in heart rate with compression garments, in a NASA-lean-test-style ortho-static test?

I can't stand for long enough to do a lean test—but I don't think heart rate's relevant for me anyway, as I can increase it without getting PEM and also get PEM without increasing it. Once I'd realised that, I stopped paying any attention to it.

 

[ScoutB]

Have you been able to measure a smaller increase in heart rate with compression garments, in a NASA-lean-test-style ortho-static test?

That would be interesting to test. Though my data might be too noisy, especially since I also take stimulants. When I first fell ill and started having OI issues I tried a few tests like this, just at home in an ad hoc way, but never saw any super dramatic heart rate jumps and haven't pursued it much since.