Life Upright (good bye OI)

[Sasha]

Spindrift, it's so exciting about your success with the g-suit! As I await delivery of my lovely NHS compression tights, I'm wondering whether you tried compression tights first and if so, how they compared to your g-suit?

Anyone know how to get a g-suit in the UK?

 

[Sushi]

I too am surrounded by things like a pool, and a wet suit (wanted to learn to surf) that I can't enjoy anymore. There are days when just looking at one of them brings tears to my eyes. Maybe someday...........

Hey Spindrift,

From a fellow OIer: Guess what? A tight wetsuit works something like a G-suit for me! I didn't dare try surfing but live at the beach and really wanted to swim in the winter. You might be surprised--I can really feel my BP rising with the thing on. It is something like getting into a "total" pressure hose garment. And, when you are swimming you are lying down :sofa:, AND have the pressure of the water adding to the pressure of the wetsuit.

I've actually contemplated walking around town in a wetsuit--yeah I'd need a one-liner too, but no tail!

I dare you!

Sushi

 

[spindrift]

Spindrift, it's so exciting about your success with the g-suit! As I await delivery of my lovely NHS compression tights, I'm wondering whether you tried compression tights first and if so, how they compared to your g-suit?

Sorry Sasha, I have not tried compression tights. The idea of peeling them on did not strike me as
something I would like to do. It brings to mind the days of pulling up nylon stockings and tearing holes
into them with my long finger nails. The g-suit has zippers.

 

[spindrift]

Hey Spindrift,

From a fellow OIer: Guess what? A tight wetsuit works something like a G-suit for me! I didn't dare try surfing but live at the beach and really wanted to swim in the winter. You might be surprised--I can really feel my BP rising with the thing on. It is something like getting into a "total" pressure hose garment. And, when you are swimming you are lying down :sofa:, AND have the pressure of the water adding to the pressure of the wetsuit.



Sushi

Hmmm, maybe I will be able to surf someday. Right now I don't think I have enough ATP to paddle out into the ocean.

I actually contemplated walking around town in a wetsuit--yeah I'd need a one-liner too, but no tail!

I dare you!

The lines for that one would be:

" I am lost, can you tell me how to get to the ocean?"

or

" Have you seen a stray surfboard anywhere?"

 

[Chris]

Hi--this G-suit stuff sounds like a hell of a lot more fun than mournfully contemplating a rowing machine! All I have dared try so far is calf length compression socks, which don't do much for me, but didn't cost much either. Maybe one day I will get more daring...I do live by the sea, and I love those one liners... "which way to the beach?" but I think I look a little too old to pull that off. But good for you! Best, Chris

 

[Sushi]

I do live by the sea, and I love those one liners... "which way to the beach?" but I think I look a little too old to pull that off. But good for you! Best, Chris

Me old! Me wear tight wetsuit!

Sushi

 

[Sasha]

All I have dared try so far is calf length compression socks, which don't do much for me, but didn't cost much either.

Chris, the medical papers on this say that you need waist-high compression tights with 30-40mmHg pressure and that knee-high, or even thigh-high, isn't enough. I've got some on order. I'll post about them when I've tried them.

 

[gracenote]

Chris, the medical papers on this say that you need waist-high compression tights with 30-40mmHg pressure and that knee-high, or even thigh-high, isn't enough. I've got some on order. I'll post about them when I've tried them.

I'm sorry if I missed this being said before. I've kind of ignored discussion on compression "stockings" as my feet couldn't tolerate that kind of pressure. Now I'm noticing that people are mentioning "tights" and my ears are perking up. My quick google search left me confused.

Sasha, where specifically would I go for information on tights, and have you found where to purchase a recommended brand? Please direct me to a post if this has already been discussed. Thanks.

gracenote

ETA: I'm trying Mestinon (Pyridostigimine) at a lower dose (45 mg 2 x per day) and am thinking it's helping a little.

 

[spindrift]

Gracenote,

There are some good sources for compresson hosiery this page:

http://www.aboutmecfs.org/Trt/TrtOIResources.aspx

 

[Sushi]

Now I'm noticing that people are mentioning "tights" and my ears are perking up. My quick google search left me confused.

Hi,

I'm not Sasha but I have used these tights and know something about them. First, the compression is graded upwards--starting at the ankle--there really isn't much pressure on the foot. And there is little compression on the abs as well. The compression is from ankle to top of thigh.

The higher compression tights are harder to get on and wear. I have used both the 20-30 and the 30-40. For me, the 20-30 worked better.

This website sells all the brands and lets you try stuff for a month and return it--no questions asked. http://www.brightlifedirect.com/

I've found them very helpful and have actually returned stuff. They also have a "house brand" -- Allegro--which is less expensive. They will consult with you on the phone too.

Sushi

 

[gracenote]

Gracenote,

There are some good sources for compresson hosiery this page:

http://www.aboutmecfs.org/Trt/TrtOIResources.aspx

Thanks spindrift. I'm realizing that "tights" is not the right word either — they still include the feet. Leggings is what I'm looking for, and none of the suppliers I checked out from your link have leggings. I need to leave my feet out of it.

ETA: Thanks Sushi. (You posted before my response got up.) I found a pair of leggings at BrightLife but realize that I can't handle waistbands, either. I'd apologize for being so difficult, but I know that's part of what we all deal with with ME/CFS.

What I need, and I found some that looked interesting on women's exercise sites (though I don't know how good they would be for doing the job), are footless leggings that stop slightly below the waistline.

 

[Sushi]

Thanks spindrift. I'm realizing that "tights" is not the right word either they still include the feet. Leggings is what I'm looking for, and none of the suppliers I checked out from your link have leggings. I need to leave my feet out of it.

Gracenote,

A lot of the brands make "footless" tights--check them out.

Sushi

 

[Navid]

just ordered my oi pants...thanks for info spindrift.
i'll let you know if they help me at all.

bye

 

[Sasha]

Sasha, where specifically would I go for information on tights, and have you found where to purchase a recommended brand? Please direct me to a post if this has already been discussed. Thanks.

Hi Gracenote - I see Sushi has given a very good reply to this (particularly as it relates to a range of stuff that you can get in the US) but you might be interested in a thread I started a while back on compression garments for OI (the g-suit is quite a spectacular version and quite rightly got its own thread!). It includes helpful advice on how to get into your tights, which I'm going to need when mine arrive!

I have some made-to-measure tights on order from Jobst, and I really do mean made-to-measure - I had to go and get measured up by one of the nurses at my doctor's and she took ten measurements from each leg! I've heard that people can find them hard to tolerate so maybe it helps if they're actually made to fit you. You have the option of having them with an open or closed toe and, if open toe, having it cut on the slant. There is also a special style option (among several such as having a zipper) of having a "T heel" but I don't know what that is.

Sushi's point about the foot bit not applying much pressure might be enough for you to be happy about the tights but if not, I'd contact Jobst and ask them about it. if you're interested in them - if you have a special issue with your feet, they're able to make stuff to spec and might be able to help. They have a US site.

Good luck!

 

[kerrilyn]

I've thought of getting SPANX to suck all my fat in, maybe they would be valuable to keep me upright too? Or anything that is so tight that I just can't bend, that would be bound to keep me upright! LOL

I don't like wearing tight socks either, but maybe tights without feet would be more appealing.

 

[_Kim_]

A UK company actually makes inflatable latex leggings (in many colors)
​

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But I don't think they were designed for OI
Seems they are marketing them to this crowd
(Warning: Adult content video)

[video=youtube;l1uKOCF_p20]http://www.youtube.com/watch?v=l1uKOCF_p20&feature=related[/video]​

 

[gracenote]

Thanks Sasha,

I kind of thought I sort of remembered another thread on OI but . . . as no blood is getting to my brain . . . I'll check it out and the sites you mention.

kerrilyn, I'd worry about the bending — going from being stuck standing to having to flop onto the couch and then having to what . . . to get back up again . . . ai yai yai . . . I think I might feel like a beached whale or something. The idea has me laughing!

:Sign Help:​

ETA: Kim, I'm just speechless. I kind of like the catwoman idea, though.

 

[kerrilyn]

Actually, I think when I've worn pantyhose (which wasn't often and it's been a while because I don't work or go out a lot with the need to 'dress up') I got leg cramps. I hated wearing them, same reason I didn't really want to buy something like SPANX. I didn't like anything tight.

I used to get severe leg cramps a lot, years ago and still do at times, and now I think it may be OI related. The only thing that would make them go away was to beg my husband to massage my legs and get the blood moving.

So when I've thought about getting compression stockings, it just seems to me that it would be associated with pain. But am I thinking about this the wrong way - is it because I have pooling in my legs that I get leg cramps, and compression stockings would then be beneficial?

 

[camas]

kerrilyn -- I bought some spanx to fit into a dress for my parent's anniversary party and found them terribly uncomfortable. Surprisingly I don't find my g-suit uncomfortable at all -- maybe because it's so adjustable. It's not really the height of fashion though. :Retro redface:

 

[spindrift]

just ordered my oi pants...thanks for info spindrift.
i'll let you know if they help me at all.

bye

Lisag, I hope it works for you. If you have any questions I will be happy to help.

Spindrift