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ME/CFS and Beating the Clock
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Life Upright (good bye OI)

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

  1. Sasha

    Sasha Fine, thank you

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    I noticed a weird thing today and wondered whether it's the same with the g-suit.

    My GP doesn't want me to wear my corset without the compression tights (I haven't been wearing the latter since an unsuccessful half-day trial) so I wore both this morning for 5 hours and then removed both to go out (when I last wore the tights in the outside world, they nearly pulled my jeans off by constantly shrinking further and further down as I walked!). As with the corset alone, I had felt better than usual in the morning while wearing both - less need to rest.

    What surprised me is that I had much more stamina than usual once I had taken them off and that the effect lasted for two or three hours! I was on my feet a lot, going round a craft fair with a friend and would normally have had to have kept making my excuses and sitting down but didn't need to - we were on our feet for probably an hour and then walked some further distance to get a coffee (at my suggestion). Then we nipped into a gallery and then a shop to make an enquiry about something, involving more standing (again at my suggestion). That lot would normally have been beyond me and I'd have really wiped myself out for a day or two if I'd have attempted it. I put the tights & corset back on straight away when I got home and feel I'm recovering my energy faster than usual.

    Have any of you who are using compression noticed the effects continuinng after you've removed the garment(s)?

    I'm hoping this means that organs are getting reperfused over and above immediate effects, but I dunno!
  2. gracenote

    gracenote All shall be well . . .

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    Sasha,

    I'm following your postings with interest. Thanks for the information you're providing. That would be great if the effects continue on afterwards. Please keep us posted.
  3. Sunday

    Sunday Senior Member

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    I think your theory has merit - at least as much as some protocols and palliative measures! Even if it is only palliative, at least it gives you more of a life. And you could be right - maybe it's possible for our bodies to be "retrained". At least it's worth a try. I agree with you that the body has a natural bias toward healing where possible; maybe the compression could make it possible. Stranger things are true.

    I wore a bra only for a little while in my teens, so I've never gotten used to constricting garments. But if this works, I might want to rethink that.
  4. camas

    camas Senior Member

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    Sasha,

    Yes, I've had the same effect with my g-suit. I've noticed that it even carries into the next day since I only wear it intermittently. Sounds like you had a wonderful afternoon!
  5. spindrift

    spindrift Plays With Voodoo Dollies

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    I am just lurking today. Have been grounded for four days due to some kind of bug.

    Thanks for the interesting posts. I also feel that when I take the g-suit off that I am still better for a while after.
    Need to check on that more when I feel better again.
  6. camas

    camas Senior Member

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    Hope it's just a mild bug and that you are feeling better soon, Spindrift.
  7. kerrilyn

    kerrilyn Senior Member

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    Spindrift, I hope you feel better soon.

    I've been thinking more about hypermobility since you mentioned it. I've gotten so stiff and sore that I didn't think I was very hypermobile anymore, my spine definitely isn't, but some other joints still are. It ran in my family and as a kid I was pretty pleased that I was 'double-jointed' (which I'd actually forgotten about). I seemed to get old and wear out much quicker than I should have for my age.

    I've been doing more reading about dysautonomia lately and the link between it and Joint Hypermobile Syndrome and Ehlers-Danlos Syndrome. There is info about how it can make veins stretch and prolapse and then cause blood to pool. And even be linked to things like uterine prolapse and spinal disk disease, I have both of those, and would have never guessed they were connected to JHS. Everything is connected - not just in terms of the human body but also everything seems connected to these 'overlapping' illnesses.

    Here are some links about it incase anyone is interested in the ties between the two:
    http://www.forums.aboutmecfs.org/sh...ybody-(Hypermobility)&highlight=Hypermobility
    http://www.hypermobility.org/hmspain3.php
    http://www.ipej.org/1004/grubb.pdf
    http://www.reumatologia-dr-bravo.cl/para medicos/HIPERLAXITUD/jointandbone_pressinterview_102004.htm
  8. camas

    camas Senior Member

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    kerrilyn,

    Thanks for your research. Quite interesting that you found a link between hypermobility and dysautonomia.

    I was also 'double jointed' as a kid -- could do the chinese splits without any effort clear into adulthood. I ache just thinking about it now!

    I remember reading that Charles Lapp found problems with the sacroiliac joint, in particular, to be quite common in his CFS patients. I think he even used it as part of his diagnostic criteria.

    The reason I remember this is that I struggle with my right sacrum. I used to have to see my osteopath several times a year to have things put back in place, but finally discovered that I could approximate what he did and now just fix it myself. I don't recall having any problems with my sacroiliac until after I developed CFS.
  9. kerrilyn

    kerrilyn Senior Member

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    Thanks for the info Camas. I will have to read some Lapp info too.

    I got mono at 18 and within a few years was having major back problem (sacrum/SI joint). A CT showed a mechanical low back problem/DDD. After that pelvic pain began, now, 15 years later it's a burning pain, primarily at night. That sort of pain (and other odd sensations) usually involve nerves. 3 major nerves (the pudendal, ilioinguinal and genitofemoral) come from that area of the spine (S2-S4 and L1-L2 region). I think entrapment of these nerves can cause pelvic pain, and/or genital and thigh pain. There can be an association with Vulvodynia too. http://www.obgyn.net/women/women.asp?page=/cpp/vulvodynia

    There are a lot of women with CFS/FM that have GYN problems like endometriosis (I had that too), but Vulvodynia gets little mention. Until the 80's it wasn't really known and now it's considered a neurological disorder. Perhaps some of the pelvic pain people experience is directly linked to back issues. Everything is connected!

    Oh, and hormones seem to really wreck havoc on my system overall and dysautonomia symptoms. Worse now into perimenopause.
  10. camas

    camas Senior Member

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    That's interesting, kerrilyn. You really know your stuff. I have some endometriosis and have heard that it's also related. I hit perimenopause at 37 and it was hell, but my doc recommended an herbal mixture that really helped. I've been taking it for 14 years and am beginning to wonder when exactly I get to drop the 'peri' from menopause.
  11. kerrilyn

    kerrilyn Senior Member

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    Not really, I'm just trying to piece things together that might 'fit'.

    My G-suit arrived in the mail today. I'm so excited!! By coincidence I found one for sale through an online classified ad for 25.00 CDN. Woohoo. It is a Long, and I am definitely short so I didn't think it would work but I think it just might. It definitely fills up with air. Can't wait to untie all the strings and really try it out.
  12. alphahusky

    alphahusky

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    Wow, no kidding. They consider vulvadynia to be neuro now? Back when I was suffering from it bad, they told me to "have a glass of wine" (I don't drink) before sex. They told me I was "nervous." Of course, they told me that about my bladder, too, and I have a confirmed- and bad- case of Interstitial Cystitis.

    They want to put that stim thing in my spine, and I've been resistent. Maybe after this baby is born. But I've had horrible low back problems during pregnancy, and now all the time, really. I'm quite sure it's nerve related and I want to get it checked out after the baby is born.

    I'm fascinated by the G-suit, but can't do it while pregnant I'm sure, and probably some time after as I've got some extra weight on. Thanks for all this info.
  13. camas

    camas Senior Member

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    Cool! I will be interested in hearing how you respond. It does take some adjusting to get it feeling comfortable. I found I did better when I laced it a little looser around the calves and a little tighter around my stomach -- so I'm thinking most of my pooling must be in the abdomen which might help to explain my big gut. :rolleyes:
  14. camas

    camas Senior Member

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    I'm so sorry to hear this. I hope they've come up with something new in the way of treatment in the last twenty years. I had a terrible case too when I was young and know how excruciating it can be.

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