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Compression garments for orthostatic intolerance

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sasha, Mar 5, 2010.

  1. Sasha

    Sasha Fine, thank you

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    My GP has asked me to find a supplier/product no. for the sort of compression garments recommended for orthostatic intolerance for when I go into the surgery next week to be properly tested and measured. In what I've read about CFS/OI, waist-high compression tights are recommended.

    So far, I've only been able to find knee-high or thigh-high compression stockings in the Jobst range, at least in the UK.

    Does anyone know of a waist-high compression garment and can tell me the make and maybe give me a weblink? Even if it's sold in the US there may well be a UK supplier. Or do people generally wear the thigh-high compression stockings and an abdominal corset? If so, who makes the corsets?

    I'd be interested to hear about people's experience with these compression garments and whether you feel they have been helpful.
  2. Lesley

    Lesley Senior Member

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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sasha,

    I regularly use Bright Life's cotton compression knee socks. They are imported from Italy and extremely comfortable. The brand is Alegro and the style is Samba. I don't think you will find full, waist high compression hose that also compress the abdomen. From what I have seen, the compression stops at the top of the thigh. Full compression hose are also really hard to get on. I have used a variety of abdominal binders together with the Samba knee sox. I don't need to abdomimal binders any more but my experience is that you need a type that has either a zipper or hooks and eyes. The ones that you can just pull on, don't compress enough.

    I had a Flexees one from Maidenform with a zipper and also a hook and eye one from a company called Cupid! This was a while back so I don't know what they are making now.

    Good luck!
    Sushi
  4. dsdmom

    dsdmom Senior Member

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    I use Jobst thigh highs 30-40 mmHg and really couldn't function without them. My neuro said you need at least thigh highs (not socks) for them to really make a difference. I don't have a lot of abdominal pooling so the thigh highs work ok for me. If youhave abdominal pooling I can see why the waist high would be recommended...
  5. Sasha

    Sasha Fine, thank you

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    Thanks, Lesley and Sushi - that's very useful information. It sounds as though I should be going for thigh high plus an abdominal binder if I have abdominal pooling.

    dsdmom, thanks for telling me about your Jobst stockings - is there a way of telling if I've got abdominal pooling? Is there a test my doctor can do for that or one that I can do for myself? It's my GP (general practitioner, not sure what you'd call him in the States, but not a specialist) I'm seeing next week. I don't know if he's likely to refer me to a specialist. He says he has other patients (Parkinson's, diabetes) with OI.

    Thanks everyone, this is really helpful information!
  6. dsdmom

    dsdmom Senior Member

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    Sasha, I don't really think there is a test for abdominal pooling. The people that I "know" (via forums) who have it seem to have just known - that their stomach gets big I think? Maybe someone else can chime in here.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Sasha,

    My autonomic specialist had me do the tilt table test with all the frills. He is an expert in reading these tests and from mine he could see that I had abdominal pooling. I don't remember which part of the test indicated this, but I'd guess it would take an autonomic specialist to make this diagnosis. He also said that studies had shown that most patients with orthostatic intolerance had more of a problem with abdominal pooling rather than leg pooling. Of course you can have both. I don't have any noticeable swelling in either legs or abdomen, but compression garments definitely raised my BP to the near normal zone. I really needed them for a long time, and I use them still if I know I will be on my feet for any length of time.

    Sushi
  8. glenp

    glenp "and this too shall pass"

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    Sushi

    Is there a trick to getting the full pantyhose compression socks on??? I have just been using the knee highs because I couldnt get the full length on.

    ty
    glen
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You bet there are tricks! Still, it takes about 5 minutes and is a complete aerobic work out.:tongue:

    This is for the full pantyhose--first Wear Rubber Gloves! Then, turn them inside out except for the feet. Stick one foot in and roll and pull the things up--this gets them right side out. When you get to about the knee, start the other leg. It is easier if you lie on your back on the bed, then wiggle and tug till you get the damn things up. The rubber gloves help a lot, but it is really a process!

    Good luck!
    Sushi
  10. Sasha

    Sasha Fine, thank you

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    Thanks, Sushi, that's very interesting - I don't have any noticeable swelling at all in my legs but I look about six months pregnant if I don't suck my gut in! I thought that was just a combo of middle-aged spread and lack of muscle tone. I'd love to think it was something else! I wonder whether people who mostly have abdominal pooling can get away with just using an abdominal corset rather than the pantyhose, which sound like a bit of a struggle. Unfortunately I don't think I'm going to get to see an autonomic specialist so I doubt I'll find out where the blood is pooling in my body.

    I'm glad you had good success, though!
  11. Sunday

    Sunday Senior Member

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    Seems as if it'd be cheaper just to get one kind of compression garment and try it, and if it works, don't bother with the other one. That is, to test it by practical demonstration; I don't know of any side effects for compression garments! I'm very intrigued by this idea of managing OI somewhat with compression, and hope to hear reports back on how it works.
  12. Lesley

    Lesley Senior Member

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  13. spindrift

    spindrift Plays With Voodoo Dollies

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    I ordered a g-suit last week. It should arrive soon. I will report on how it works.
  14. Sasha

    Sasha Fine, thank you

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    I've just been listening to Dr Medow's CAA webcast on his research on OI in CFS. He showed how you get tested for where your blood is pooling when you stand. What struck me was that in people with CFS, blood moves mainly from the thorax to abdomen and not much into the legs (it's a huge shift - about 30% of the thorax's blood volume is lost and the abdomen gets a 40% increase; the figures for controls are 10% and 15%, respectively - all judging by eye from his graph).

    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"!

    Also, Dr M showed evidence that for people with CFS & OI, we can't increase our blood flow to the skin in response to heat as effectively as others (it helps the body cool by getting the blood nearer to cool air). I hear the tights are hard to tolerate in hot weather - is this another argument for an abdominal corset instead? Or would you end up with blood trapped in your legs, unable to get up past the abdomen, like a string of sausages in distress?

    Any comments? Meantime, I'll look into how to send these questions in advance to the clinician who's doing the next talk!
  15. gracenote

    gracenote All shall be well . . .

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    Good questions, Sasha. And great idea about sending them to the person doing the next talk. Thanks.
  16. Lily

    Lily *Believe*

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    From everything I know and have read, you really need compression of the abdomen in addition to legs. I know some have said stockings help, but I have heard more testamonies that they don't. I also know the compression needs to be substantial. I think Sushi mentioned her trick for getting the stockings on. I have put them on other people enough to know that I could never get them on myself (these days), and couldn't tolerate them if I did. But yay to everyone that can if it helps. I've been looking at the G-suits with envy, knowing I couldn't tolerate it either.

    Good idea to send the questions!
  17. kerrilyn

    kerrilyn Senior Member

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    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.
  18. rebecca1995

    rebecca1995 Apple, anyone?

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    I used to wear a waist-high Jobst garment that did compress the abdomen. I have to say, the thing was so tight I could barely breathe. That discomfort, combined with the hassle of getting the garment on--I needed help--led me to give up on the whole enterprise. I wish Jobst or someone would come up with something that's actually wearable!

    I wonder if Spanx would work? :D
  19. Lily

    Lily *Believe*

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    I don't think SPANX would work Rebecca, not enough compression. I tried some super duper support hose including abdomen when I was still working - didn't work. The Jobst stuff is unwearable, but is a good example of the compression needed.:eek::eek::eek::eek: Not a solution in my book. Oh - and they need to come up to about bra level, which your Jobst's probably did?

    Good golly, I wasn't in nearly as bad of shape as I'm in now when I tried those super support stockings - I should have made a movie of me getting those on - it had to be the most hilarious thing anyone has seen in a long time. I'd work up a sweat and be totally out of breath and have to rest half-way through.........oh the memories!
  20. camas

    camas Senior Member

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    When you pump up the g-suit the air equalizes against the abdomen, front of the thighs, and shins because it's one continuous bladder. I haven't tried other compression garments unless you count spanx which I found torturous. I think having your knees and behind free in the g-suit makes it reasonably comfortable, plus it can be adjusted both by the lacings and air pressure. Also the large zipper on the side of the 'girdle' can be unzipped a little from the top down when you are sitting.

    I don't know if I have more pooling in my legs or stomach, but have noticed that my gut actually stays flat for awhile after I remove the suit.

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