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Life Upright (good bye OI)

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by spindrift, Mar 21, 2010.

  1. spindrift

    spindrift Plays With Voodoo Dollies

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    "Originally Posted by spindrift
    If you meet that 'special lady' at the wedding look her deeply into the eyes
    and whisper " I am a specialist in all things starting with 'g-'. "

  2. Navid

    Navid Senior Member

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    spin/camas

    my pants are here...OMG!!!! weird. how do i adjust the legs they are sized so tiny, for like a 10 yr old boy. i am small....these are teeny tiny do i unlace these very intricate knots in hidden zipper compartments.

    i have the waist part on and blown up and swear i actually feel better....so once i can get the legs on...should be great.

    i walked into a room where my 8 yo was sitting w/just the inflatable girdle/waste on...and other the other parts flapping behind me...he looked up once cracked a smile an then returned to his activity.

    my husband said hey if they help you feel better who the heck cares how weird you look.

    mine kind of smell mildewy but hold the air very well.

    the tail is hysterical.

    this is the most fun, interesting thing we've purchased in my quest for health.

    thanks, lisa
  3. camas

    camas Senior Member

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    lisag -- Congrats on getting a suit that holds air!

    You'll probably want to let all the air out before trying to adjust the laces in the leg compartments since the bladders in the girdle and the legs are interconnected. Maybe you could con your husband into adjusting your laces for you as you stand?

    My laces were in carpenter's knots, so I'm guessing that's what you have too. You just untie the first knot, and then give the rest a tug and they should come out.

    My suit was mildewy too. Had to run it through my washer a couple of times on the gentle cycle to get rid of the smell.

    It has to be my all time funniest CFIDS-related purchase too.:Retro smile:
  4. spindrift

    spindrift Plays With Voodoo Dollies

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    Welcome to the Club of Women with Long Green Tails!!!

    Hey Lisag,

    How exciting!

    Camas already gave you all the important inside scoops. DO let the air out before adjusting the
    strings. After I found the right tightness for the suit, I used a J/10 6.00mm crocheting needle to
    put the ends back into the same knots they came with. This has the advantage that you just have
    to pull at the end of the strings to untie it again if you have to readjust. If you don't know how
    this is done just show one of the original knots to someone who knows how to crochet. They
    will know just what to do.

    Keep us updated on your new adventures. :victory:

    Oh just wanted to ad I took an ever so long walk today keeping the suit to the maximum pressure.
    It was incredible. I walked and walked and even jogged the last few yards to my car. Before g-suit
    I would not have been able to do a small fraction of what I did today.
  5. camas

    camas Senior Member

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    Spin -- I didn't know those were crochet knots! As a needleworker, I hang my head in shame. :ashamed:

    Congrats on your big walk. I hope you have many more to come. :victory:
  6. Sunday

    Sunday Senior Member

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    I have found this thread so interesting and informative and hopeful!

    for all that I have gained, I have a tiny tip: baking soda or very small amounts of orange oil in the wash can help with the mildew thing. So can just hanging the suit out in the sun, should you have sun.

    Dr. Yes, I think a G-suit would be fine at your sister's wedding, tastefully accoutered with the boutonierre suggested, would do away with those awkward conversational pauses one so often encounters when meeting new people. You wouldn't have to talk about the weather! As for "all things g", you might want to use that formula to focus that, for instance you don't want women to suppose you are an expert in Gristle, Gruesome, Gee Whiz, or, probably, Guts.
  7. spindrift

    spindrift Plays With Voodoo Dollies

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    Camas,

    I hadn't touched a crocheting needle since being forced to do so in school as a child. But
    like they always tell you when you are a kid, amazingly enough you DO need the things you
    learn in school later in life.
    Now if they had only forced me to take those typing lessons that I opted out of. :D



    Thanks for the mildew tips, Sunday and I am happy you like the thread.

    A word to Dr. Yes: While Sunday makes a good point that reciting Newton's law of universal gravity
    is useful to point out some "g-" things you specialize in, I have found throwing physics formulas at people in a conversation to be more useful in abruptly ending conversations with people that I find boring. I am sure you will find more eloquent ways to point out which "g-" things you actually specialize in.
  8. spindrift

    spindrift Plays With Voodoo Dollies

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    An Interesting Take on OI and Connective Tissue

    Since I also have some problems with hypermobile joints (although not enough to qualify for HJS) and this seems to get worse at the same time OI is bad I thought I would post this. It is also thought
    that there is a connection between joint hypermobilty and fibromyalgia.

    http://www.reumatologia-dr-bravo.cl/patients/Dysautonomia.htm

    Note I do not agree with all that is said there.
  9. Chris

    Chris Senior Member

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    Walking again! wow!

    Hi, Spindrift--so you can now take real walks with the help of that G-suit--great! and congratulations! I would be interested to know whether the new found ability to exercise feeds back and reduces your other symptoms--I keep having this fantasy that if only I could get some real exercise, my symptoms would just magically resolve; is this happening at all? Keep going! Chris
  10. Chris

    Chris Senior Member

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    Sorry, Spindrift--realize I should have been more specific--did your long walk trigger any PEM, or have you avoided that? and can your body learn to now walk longer without the G suit--are you teaching it a new trick or do you remain dependent upon the suit for your new-found powers? I guess you don't have the answers yet, but this does sound exciting! You may be coming out of that damn box! Best wishes, Chris
  11. spindrift

    spindrift Plays With Voodoo Dollies

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    Chris, I really enjoy your excitement!

    Yes, I haven't a clue where this is going. Too many variables, I need to do more experimenting
    before I can say anything.

    Quick look back:
    This all started a year and a half ago with having a hypermobile sacroiliac joint (SIJ) although I realize in retro perspective I have had mild OI and blood pooling all of my life. After having SIJ
    problems, first wide spread pain and then severe fatigue and neurological problems set in. First
    diagnosed with fibromyalgia and then CFS. I just recently discovered that I also have POTS and orthostatic diastolic hypERtension. I had been following Sarah Myhills protocol for months and felt absolutely well at rest (no more central sensitization nor pain) but got absolutly sick as soon as I stood up. Hence the g-suit attempt.

    Since g-suit:
    I am able to be up and way more than before with the g-suit on and I would like to believe
    that it is improving the longer I have been wearing the g-suit. Of course I am probably
    deconditioned form laying in bed for so long. So maybe I am just starting to condition myself
    because the g-suit enables me to be upright. Too early to say.

    As far as PEM goes, my PEM used to be mostly pain and OI. Rarely did I have swollen lymph
    knots although that has occurred too. So after that long walk yesterday my OI was very severe
    this morning, but we also had a barometric drop which could have been the cause. :confused:
    I did immediately feel better after putting the g-suit on.

    I find that after putting the g-suit on I tend to feel better and better as the day goes on.
    Unlike before when the more I walked the worse I felt and the less brain function I had,
    I now start feeling better when I walk and my brain stays with me (I don't think
    I need to explain what a blessing that is). Of course I am trying not to push too much at the
    moment. So there might be a point where I break, but I haven't pushed there yet. Maybe my
    fatigue is solely OI caused by a connective tissue disorder? Or is it mito dysfunction or may be
    XMRV after all? Who knows? I am not a doctor nor a biochemist.

    What I do know is if you have OI and blood pools in your lower body this can be helped
    with putting pressure on your lower body in form of a g-suit (good old reliable physics,
    more my field of expertise). ;)

    What happens biochemicaly in the body afterwards is over my head. But I seem to be in
    good company with most doctors there. :D
  12. Sasha

    Sasha Fine, thank you

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    That's really interesting, Spindrift! It's so exciting that you're having good results.

    I've experimented this morning wearing my new (ordinary, department store lingerie) lycra corset out to coffee this morning so see if I had more stamina - I think I did, a bit, but now that I'm sitting down I'm not sure it's as effective and I'm not sure whether it's a good idea to wear it lying down (it's hard to pull off and on so I'm avoiding doing that if I can). It made me wonder - do you deflate your g-suit when you're sitting down?
  13. spindrift

    spindrift Plays With Voodoo Dollies

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    Sacha, I think you should be OK lying down with your corset. I am sure other people wearing corsets don't always take them off when lying down.
    I do love the fact that I can adjust the pressure on my g-suit. I have it tightest when I am standing and walking, release some air while sitting and when lying during the day I keep a small amount of pressure on it. At night I take it off.

    While I am here I would like to note some other findings:
    Yesterday the lymph nodes in my neck started swelling and I got a sore throat, all out of the blue, since I had not been over doing things.
    Although I still feel better standing up with the g-suit on, I feel too yucky to do anything. So g-suit helps with OI and blood flow to the
    brain, but if you have that flu feeling (which I don't get very often) you still will won't be able to do much of anything.
  14. Sasha

    Sasha Fine, thank you

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    thanks, Spindrift - I've been wearing my corset all day for the last couple of days and I've got noticeably more stamina. So far it seems to be mainly helping me sit for longer - both with my feet up, which is my normal posture and with my feet on the floor (which I usually struggle with). I need to start timing how long I'm doing this stuff for - especially standing and walking - as it's so exciting to be able to do more that I'm not really monitoring what I'm doing! I need to lie down less in the day.

    I put it on straight away in the morning as soon as I get out of bed - I can immediately feel an improvement - and only take it off to shower and go to bed. I can feel myself immediately feel more tired and heavy when I take it off.

    I'm going to ask my doctor if there's any reason not just to wear a corset for OI, given that Dr Bedow's research seemed to indicate that for CFS OI people it's all about blood moving from the thorax to the abdomen and not the legs. I'll post if I get an answer!

    I'm really pleased with how much more energy I've got with this corset - I also think I'm thinking more clearly for longer. I'd say at this stage I'm feeling generally better during the day, need to rest maybe two hours instead of four hours, need to rest less often, can sit maybe two hours rather than one hour and can probably walk/stand longer. I'm anxious not to push too hard so am going to try to build up steadily and also use some of the extra energy to do core muscle exercises (so I can have an internal corset!) and some gentle recumbent bike exercise with a pedal exerciser I've just ordered for 20!

    Men - don't be shy, there are corsets for guys too! Here is The Telegraph's correspondent trying out an M&S one but I'm sure there will be ones more like abdominal binders as well rather than t-shirts - but if they're in M&S, they're mainstream!

    Anyone else trying just a corset?
  15. kerrilyn

    kerrilyn Senior Member

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    We sound similar Spindrift. I've had low back problems since I was 20 and SI pain too. Now I realize I've had some POTS/OI problems probably since after mono or chemical exposure OR related to the spine problems. I don't know which came first. But whiplash triggered fibro, severe fatigue, neuro symptoms and OI problems even more. Now I'm finally understanding why I'm affected so much from seasonal changes. Fibro pain in the winter, OI in the summer for example and flare ups various thing all the time (for reasons I've yet to understand). It's a real balancing act to do activity and keep the fibro pain down the CFS PEM less and POTS/OI symptoms from flaring.

    Like you I've wondered how XMRV can fit in there or be a spine or connective tissue disorder. I didn't even know an SI joint can be hypermobile. The only area I think am is my toes.
  16. girlinthesnow

    girlinthesnow Senior Member

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    Sasha, did you get yours at M&S? Do you mind if I ask which sort you went for?
  17. Sasha

    Sasha Fine, thank you

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    Oh, bum! I've just got back from my GP's. He thought I hadn't given the compression tights a fair go and thought I ought to try them for several days. He also thought that by wearing only a corset I might risk damaging the veins in my legs, so he wants me to give the tights another go, though said I could wear the corset with them.

    I've just put the whole ensemble on - the tights were easier to get on now that I know what to expect! And I've got the corset on top. I'll see how I go. He has also referred my questions (and possibly me) to a specialist because he admits he can't answer all my questions on this, so maybe I'll find out more.

    What a shame! I had been thinking that I could easily hack wearing this corset on its own but the tights are hot and rigid and pull themselves down all the time. Anyway, for now it looks as though the advice is not to wear a corset on its own.:(
  18. Sasha

    Sasha Fine, thank you

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    I bought a Flexees "Long Torso Hourglass Waistshaper" (I think having a longline one that goes right down to your hips is probably important) and have just ordered a Flexees "Long Torso Waistnipper". They're both 18 but the Waistshaper is basically a very tight tube that you have to pull on over your hips and I don't like the thought that if I pass out on the bus, someone is going to have to take a pair of scissors to me to get me out of it! Hence the Waistnipper, which fastens with hooks and eyes up the front.

    I went to House of Fraser to try on the Waistshaper and was glad I did - I couldn't even get into the one the saleslady suggested as being my size (although the one I bought - large - is for my size which is 14). However, the stores don't seem to be receiving the Waistnipper any more so I've ordered that directly from the Maidenform site (4 delivery).

    Please bear in mind my post above, though, that my GP just told me he thinks I shouldn't be wearing a corset without compression tights (eurgh!).
  19. Sunday

    Sunday Senior Member

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    Well, whoever knew there was so much to compression! Spindrift, thanks for your detailed reports, I'm very interested to read about your experience.

    I kind of cringe at the tights/corset idea as I don't like being constrictted, but for those who have opened themselves to it, you might want to know what I read on another thread: that the hooks-and-eyes ones are the only ones that can go tight enough to give proper compression. So the Waistnipper was a good choice!
  20. Sasha

    Sasha Fine, thank you

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    Thanks, Sunday - I didn't know that about the hooks & eyes ones. I've ordered the same size as the pull-on one but I can think about going tighter.

    I know what you mean about feeling constricted. When I first used the corset on its own, I really felt like I was being crushed! But after a couple of days I didn't really notice it (except if a bit of whalebone dug into me!). I think that with the corset, it's maybe like when you're a girl and start wearing your first bra - you're really conscious of it to start with but after a few days don't notice it and for the rest of your life don't feel a thing! I wish that were true of the tights, but maybe I haven't given them enough of a go yet.

    I think that compression garments are usually thought of as a palliative for OI rather than a treatment (i.e. like a crutch rather than something that will fix the underlying problem) but I am hoping that although they might be a crutch for OI, they might help the underlying cause of CFS by getting more oxygen to the thorax and brain. The brain is basically an organ for healing your body - it controls a ton of biochemical processes including immune and other systems - so having it properly oxygenated I hope will help improve my CFS status and help me eventually recover.

    Maybe I'm kidding myself - I hate the idea that I'll have to wear these tights forever - but I think it's plausible as an idea.

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