Compression garments for orthostatic intolerance

Christopher

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Just be careful, Chris
It might not be purrdy.......
I'm a little insulted that you don't think I can pull it off. I have a much better figure than that guy. I will def. take pictures for you guys...

In all seriousness though, I just bought the g-suit from flighthelmet.com - I'll let you know how I do. :)
 

Lily

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I'm a little insulted that you don't think I can pull it off. I have a much better figure than that guy. I will def. take pictures for you guys...

In all seriousness though, I just bought the g-suit from flighthelmet.com - I'll let you know how I do. :)
Actually, I think he just didn't pick the right style for his figure or color for his skin tones. I know you have better taste.

Seriously, I'm anxious to hear about the g-suit - fingers crossed that it works for you too!
 

Sasha

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[...]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 was just re-reading this article on OI and it mentions this in the first para of section c ("c. Treat contributing medical conditions":

"Attention to other medical conditions is crucial to ensuring that the NMH or POTS treatments are as effective as they can be. In particular, preventing activation of even mild asthma and allergies has been important in keeping our patients from developing a worsening of symptoms. In patients with asthma, we usually try to reduce reliance on albuterol and other beta-agonist inhalers, as these medications can mimic the effect of too much epinephrine, and can aggravate NMH in particular. Endometriosis and other painful conditions may aggravate symptoms, and ovarian vein varices in women with pelvic pain are associated with fatigue and worse orthostatic intolerance. Sinusitis, anxiety disorders, depression, and infections of any sort are examples of other conditions that need appropriate medical attention when present."

Maybe this is something you should look into! I will PM you to make sure you see this.
 
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FYI, FlightHelmet.com has some size Small in stock- I just this afternoon received mine, Sm reg in "very good" condition (I'd been waiting & praying & intermittently watching since summer for my size!)- I have been wearing for several hours now, & I know it's too early to tell, but the compression feels good & all indications are that this might help (it would probably cost me more to be tested for OI/POTS than to give these G-trousers a go [even if I could convince Dr to test!]).
:rolleyes: Here's to another tiny spark of hope for some symptom relief.
I've found compression stockings SO hard to put on, but I might give another go if this 'Anti-G suit' helps.
I will report back as soon as I am able. FlightHelmet.com was fast, w/ nice Cust Svc rep on phone.
 

carolwxyz99

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I get orthostatic intolerance, but had never heard of abdominal pooling. I wonder if I have that. Once I get up my tummy is always bigger - I had always put that down to my gut function/bloating.

I do however, find my tummy is pulled in a lot more when using yoga fold over trousers by gossypium - http://www.gossypium.co.uk/catalog/...a_sportswear-c-89_96/fold-over-trouser-p-426/ (hope it is OK to put a link). I get a tight fitting pair and I fold them over several times overy my tummy and quite a few people comment on how much thinner I look - they are comfortable too - and my bowels feel more regular when I wear them - they seem to press in just the right places. Not sure if they are tight enough to stop abdominal pooling though.

I have never got on with compression stockings - which I had to take after surgery - I found them too tight and irritating - from a neurological point of view probably stimulating the touch senses to much. They used to make me itch a lot after the first week or two as well.
 

leaves

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I am thinking of getting a compression pantyhose for my OI. Do they also help abdomen blood pooling?
I found this website http://www.foryourlegs.com/search.php?mode=search, there is quite some price variation and I dont know what one is best, i was thinking of getting the yuzo basic with a compression of 30-40. However I have very long legs so not sure if ill fit them. Any advice is appreciated! Thanks :))
 

Sasha

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I am thinking of getting a compression pantyhose for my OI. Do they also help abdomen blood pooling?
I found this website http://www.foryourlegs.com/search.php?mode=search, there is quite some price variation and I dont know what one is best, i was thinking of getting the yuzo basic with a compression of 30-40. However I have very long legs so not sure if ill fit them. Any advice is appreciated! Thanks :))
Hi leaves - I have Elvarex compression hose and they are graduated in the pressure they exert so that they're tightest lower down and relax a bit over the tummy. I started wearing mine in the summer when it was so hot that I only wore them indoors (too hot to wear under trousers) and they did nothing but keep slipping down because the tension in the legs keeps pulling them down, meaning that the abdomen bit just widens and shortens and so exerts no pressure.

I've just started wearing them again now that the weather is cold and have been wearing trousers over them. Now they stay up, because the trousers hold them in place (not trousers with lycra, though!). And I have noticed that there is pressure on the abdomen this time.

Mine were made to measure and were expensive (150?) but I got them free on the NHS (thank you, NHS!).
 

Sushi

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I am thinking of getting a compression pantyhose for my OI. Do they also help abdomen blood pooling?
I found this website http://www.foryourlegs.com/search.php?mode=search, there is quite some price variation and I dont know what one is best, i was thinking of getting the yuzo basic with a compression of 30-40. However I have very long legs so not sure if ill fit them. Any advice is appreciated! Thanks :))
Hi leaves,

I've experimented with different combos of compression garments and have found the people at www.brightlifedirect.com extremely helpful. I have very long legs too and, in a free phone consult, they helped me find the right fit. They also let you return garments that don't fit.

The panty hose are really a pain to get on! And not so comfortable once you succeed. They do work though, but more on the legs than on the abdomen. Since my doc did say I had abdominal pooling, I have opted for cotton, compression knee sox and an "abdominal binder". This is more comfortable for me. The "abdominal binder" really needs to be tighter than an ordinary girdle. You can find them (even in department stores) with zippers or hooks and eyes. Sounds like 19th century female torture! :eek:

As far as hose, for me the 30-40's were just too uncomfortable--could hardly bend my legs when walking. Others like them. This is why a place that lets you return them is good. Bright Life carries all the brands plus their in-house brand--Allegro.

Happy Christmas compressing!
Sushi
 

leaves

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Thanks Sushi and Sasha :)
This is super helpful! I will contact the people at brightlife but first measure my "leg-dimensions". Hmmmm thigh highs and abdominal binders would make a rather eh... 'interesting' outfit. Lol
 

soulfeast

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Glad to find this thread. My ANS just busted a gut and its bad. I have had POTS for years and recently developed more of a swing low to high with the tachy. I found this place for cheaper compression hose and I think they are OK.. have nothing to compare them to:

http://www.discountsurgical.com/details.asp?ProductID=21237

They are about 1/3 the price of the other hose.

I have the 20-30 and 30-40 panty hose. I think my stomach pooling is worse with them.. most likely because there is only annoying pressure rather than gradient pressure going up the abdomen.

I am wondering about thigh highs and then wearing a corset like device. Ive read that knee highs can cause edema above the knee but seems not for everyone... so I may experiment with those as well.

I experience less leg pain when I wear the hose. Also have made my BP go up too much, most likely because I do swing. My BP can be up and have tachy, which I think is more POTs like. Makes me have to take off the hose which is a pain.. so I would prefer thigh highs or socks with the compression garment for the abdomen if it will work.
 

Sasha

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My doctor warned me against having any gap in my compression garments - i.e. not to wear compression socks or stockings with an abdominal binder because of the risk of blood pooling/oedema in the gap.

Careful, guys!:eek:
 

soulfeast

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That would make sense. But the pantyhose make things worse, not better.. not sure what to do other than experiment. The way the pantyhose bind but dont seemingly compress my stomach for some reason makes me have stomach issues that feel like pooling.. swelling, pain, etc. What to do...