Compression garments for orthostatic intolerance

[Sushi]

I have a disgusting girdley thing that zips up and really exerts pressure--it isn't bad. I also have one with various choices of hooks and eyes so you can choose your torture level.

Sushi

 

[citybug]

The g-suits are sounding good. I just looked at the sizes and the small says 130 lbs. Can they adjust a lot? I'm 99 lbs now, usually 110. Would eat more if could stand up.

I hate all stockings how they pull on toes. Would the thigh high compression stockings work if you cut off the feet?

thanks for all the practical advice.

 

[spindrift]

This makes me wonder: is it all about stopping blood flowing down into the abdominal area, then? In which case, shouldn't it all be about abdominal corsets and not tights (which I gather don't have much compression in the abdomen)? Are those of you now sporting g-suits really pumping up the pressure in the abdomen? People seem a bit more excited about their g-suits than their compression tights/stockings, but I'm not sure whether that's because of how much better they feel in comparison or the thrill of going all "Top Gun"!

Any comments?

Sacha, I think the g-suit helps because it puts pressure on calves, thighs and abdomen. First I only had calve sleeves. That did
help with the pain I always had in my calves but not much more. The g-suit helps with all aspects, especially getting blood to the
brain. It makes such a great improvement in my cognitive function, that I will happily go 'Top Gun' all day. I only take it of for sleeping
and showering now.

Camas makes really good points about why it is so comfortable compared to other compression garments.

 

[spindrift]

The g-suits are sounding good. I just looked at the sizes and the small says 130 lbs. Can they adjust a lot? I'm 99 lbs now, usually 110. Would eat more if could stand up.

I hate all stockings how they pull on toes. Would the thigh high compression stockings work if you cut off the feet?

thanks for all the practical advice.

Hm, I am not sure if they would work for someone weighing 99 pounds. I have a 'small' at 135 pounds and could tighten it some
more, but I don't know if that would make up for 36 pounds that you have less than me. I would call a company that sells them,
they often let you return them if they do not fit.

Thigh high compression stockings would probably not work so well. I think you definitely need to compress the abdomen.

 

[camas]

The g-suits are sounding good. I just looked at the sizes and the small says 130 lbs. Can they adjust a lot? I'm 99 lbs now, usually 110. Would eat more if could stand up.

Mine is a small/tall. All cinched up, the smallest waist measurement is 28 inches which on me is right up under my ribs (I'm short-waisted). The upper thigh all cinched up is 17 1/2 inches and mid-calf is 11 inches. Once you add air it would make it smaller, but I'm not sure if that would be enough for you. I wish I could send you about 20 of my pounds!

 

[Sasha]

I'll have to rewatch it because I don't remember the actual tests to show where the blood is pooling. I've been trying to figure this out for myself. I don't think my leg colour changes when I stand....but I didn't notice my HR was raising a lot either so I don't really trust my observations now. I have however had probably 20 years of severe leg cramps (calves) - and I finally understand now why it is much worse in the summer! I've really hated the thought of wearing something constricting on my legs (like pantyhose), because it's caused more pain, possibly because it trapped blood in my legs.

People talk about abdominal pooling and pain with OI but I don't notice that, maybe because my abdomen is already fat. D'oh! Instead when I stand at times I now get severe pelvic pain, low just above the pubic bone or on the flanks. A year ago I started getting a new, intense (burning, nerve type) of pain and there is also a pressure involved. At first I thought it involved nerve entrapment because it's at night and I didn't even like to touch my skin in that area. I find it worse during my cycle when estrogen is the highest, and estrogen makes everything swell.

I'm able to touch my skin now, but I'm wondering if it could be pelvic congestion syndrome, where the veins of the ovaries (or pelvis??) fill will blood (like vericous veins in the legs). With PCS it is suppose to be worse at night because of being upright during the day and the pressure that would put on the veins.

I have yet to read about pooling in the pelvis with OI, only mention of abdomen and legs. But, I think it may be all intertwined, and if I have blood pooling in that area that would complicate things and I have been thinking of wearing an abdominal binder/corset because of it. If I do pelvic tilts or apply pressure (hold a pillow tightly against my pelvis) at that time it does seem to help. Now I need to see when OI symptoms happen in regards to my cycle too.

kerrilyn, I'm so sorry you're having such a bad time with this. In the talk, acc. my jottings, Dr M said that there's about a 10% increase in blood volume in the legs and in the pelvis on being tilted to near-standing from supine, both in people with and without CFS/OI. That was the bit of the talk illustrated by the line drawing of the vertically-squashed man with the colourful dots on - I can't remember what the measurement method used was but I think the dots indicated where sensors (electrodes?) where placed on the study subjects. The big difference between those with and without OI was the scale of blood volume loss from the thorax and into the abdomen.

 

[Sasha]

My Jobst compression tights arrived three hours ago and I'm amazed at the lack of abdominal compression! They're fairly tight on the legs but make no difference to the profile of my tummy at all and so I'm assuming aren't compressing it. My legs and body are generally slim but I have this big tummy that makes me look six months pregnant! This really makes me wonder if it's pooled blood that's partly responsible.

The Jobst tights (and I think compression tights generally) are designed for lymphodema and impose less and less pressure as they go up the body (I think) so by the time they get to the abdomen, there's not much going on. I'm not convinced that a garment designed for lymphodema is suitable for OI. If I go up another pressure level to get more abdo pressure I'll hardly be able to squeeze my legs in and they'd be unbearable in the summer.

I'll see how I do over the next few days and then contact my doctor about a corset. And maybe order a g-suit, while I'm at it!

 

[kerrilyn]

Thanks Sasha. Sounds like the g-suit is the way to go. There probably aren't a lot of really short pilots out there, so that I can find a used one!

PS - I remember that part of the webinar now.

 

[leaves]

Happy to find this thread! because my IO Dr Klimas wanted me to buy compression stockings. I am thinking of buying a support pantyhose from jobst at http://www.foryourlegs.com. But it is pretty expensive, about $100!!! . Would you think this also has tummy support ? I think I have blood pooling there. Which compression would I need? someone mentioned 30?
In this website you can also select for the condition, e.g. CVI, DVT, varicose veins, swelling or Lymphedema, what would be most applicable for IO?

 

[Sasha]

Happy to find this threat! because my IO Dr Klimas wanted me to buy compression stockings. I am thinking of buying a support pantyhose from jobst at http://www.foryourlegs.com. But it is pretty expensive, about $100!!! . Would you think this also has tummy support ? I think I have blood pooling there. Which compression would I need? someone mentioned 30?
In this website you can also select for the condition, e.g. CVI, DVT, varicose veins, swelling or Lymphedema, what would be most applicable for IO?

Good questions, leaves! My Jobst tights (made-to-measure) cost 170 which certainly is expensive! I've just given them a trial out of the house and couldn't tell any difference between having and not having them. I went to a gallery and was just as unable to keep standing up as ever: had to sit down every few minutes. I think it's the lack of abdominal compression.

I also found that by the time I got home, the crotch had descended about 3 inches and was pulling my jeans down! The hem of my jeans was trailing on the ground. It's because they're so tight and there's no waistband or anything to hold them up. They also offer quite some resistance to walking (they're quite rigid at the knees and where you leg joints at the top of the thigh). They'd be murder in the summer. Oh dear!

leaves, I don't think that support pantyhose would have abdominal support unless they say they do. When I've read specialists' recommendations on the net, they say you must have waist-high compression and it should be between 30 and 40 mmHg. That's interesting that you can choose the condition - I haven't seen that before and don't know which would help for OI. Does anyone else know?

 

[Lesley]

The slides from the webinar with Dr. Medow are up. http://www.cfids.org/webinar/oi-slides-32510.pdf After looking at them, pooling in the abdomen really does seem to be the biggest problem. It seems like an abdominal binder would help, and I would be much more likely to wear it. I live in Florida, and am always hot, so tights are really out of the question.

 

[Sasha]

The slides from the webinar with Dr. Medow are up. http://www.cfids.org/webinar/oi-slides-32510.pdf After looking at them, pooling in the abdomen really does seem to be the biggest problem. It seems like an abdominal binder would help, and I would be much more likely to wear it. I live in Florida, and am always hot, so tights are really out of the question.

I'm not sure whether it would be a good idea just to go for abdo compression without anything on the legs but I thought I'd go to a lingerie store and just buy myself a long corset and try it out, rather than wait to be prescribed a surgical one - I agree it would be much more bearable in the summer and you could wear a thin cotton t-shirt underneath (the lingerie tends to be polyester so might be sticky on its own).

I went to a department store's website to see what there was and thought that one that fastened up the front would be easiest, like this Flexees waistnipper (only 18 - US27 or so?). Any pull-on corset that offered significant compression would presumably be a killer to get on and off and I'd want to take it off several times a day to lie down.

As soon as I can get into town I'll go and try some on!

 

[Lesley]

There's also something like this: http://www.amazon.com/gp/product/B000Z9CT8W/ref=s9_simh_gw_p121_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=0D8M04C766BQKYH8WETC&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846

 

[Christopher]

I've been using compression stockings for a couple months now, and while they do help I'm thinking about getting a g-suit and trying it. Where have you guys that have purchased them gotten them from?

-chris

 

[Navid]

I've been using compression stockings for a couple months now, and while they do help I'm thinking about getting a g-suit and trying it. Where have you guys that have purchased them gotten them from?-

flighthelmet.com

mine s/b here this week. hope they help me as much as they've helped camas and spin : )

good luck to you

lisa

 

[spindrift]

Got mine from flighthelmet.com too. It is working really well. Here is a thread on it:

http://www.forums.aboutmecfs.org/showthread.php?3838-Life-Upright-(good-bye-OI)

 

[leelaplay]

I'm not sure whether it would be a good idea just to go for abdo compression without anything on the legs but I thought I'd go to a lingerie store and just buy myself a long corset and try it out, rather than wait to be prescribed a surgical one - I agree it would be much more bearable in the summer and you could wear a thin cotton t-shirt underneath (the lingerie tends to be polyester so might be sticky on its own).

I went to a department store's website to see what there was and thought that one that fastened up the front would be easiest, like this Flexees waistnipper (only 18 - US27 or so?). Any pull-on corset that offered significant compression would presumably be a killer to get on and off and I'd want to take it off several times a day to lie down.

As soon as I can get into town I'll go and try some on!

Hi Sasha - I'm thinking this might be worth trying. I've heard of stomach control garments for the overweight & out of shape. I think they're just like underwear, but high with lots of spandex across the abdomen. I think the large-size stores have them. Mind you, a corset could be quite sexy in a retro sort of way!

 

[leaves]

:Retro smile: lol

 

[BEG]

Well, it is almost summer. Swimsuit time. If it's abdominal pressure you want, try on a Miraclesuit. I guarantee great compression with one of those, and you won't have to wear anything else with it. Um . . . . maybe a pair of shorts for public if you can get out.

 

[Christopher]

Well, it is almost summer. Swimsuit time. If it's abdominal pressure you want, try on a Miraclesuit. I guarantee great compression with one of those, and you won't have to wear anything else with it. Um . . . . maybe a pair of shorts for public if you can get out.

Thanks for the suggestion. I'll give it a shot and let you know how I make out.