1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
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Article: What I Look Like Just Doesn't Matter

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 11, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. serenity

    serenity Senior Member

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    Austin
    notice a man wrote that! haha! we women care what we look like!
    the day i dont' care anymore i'll know i've really lost the game
    seriously, the docs made me gain weight & i hate it, i feel better physically but i loathe the way i look
    & i'm not that big, i was just so used to being a perfect tiny size like the models
    shopping was my favorite hobby, now shopping isn't as fun
  3. rebecca1995

    rebecca1995 Apple, anyone?

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    Northeastern US
    Thanks for posting this, Kelvin!

    And I hope it won't seem petty to bring this up, folks, but anti-retrovirals could cause some cosmetic changes!

    http://clinicaltrials.gov/ct2/show/NCT01023620

    :eek:
  4. serenity

    serenity Senior Member

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    Austin
    great - ugh. well i knew this wasn't gonna be easy...
  5. Cort

    Cort Phoenix Rising Founder

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    Lots of formerly slim people who aren't anymore....another one of the mysteries of ME/CFS.

    I never had a butt anyway. I'm definitely growing a belly....
  6. Victoria

    Victoria Senior Member

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    Melbourne, Australia
    I was always model slim (up to the age of about 23). I travelled overseas to London a couple of times & eventually arrived home 20 pounds heavier at the age of 27, then I put on another 20 pounds, & then some more in recent years.

    No matter how much I exercised & ate a low calorie diet, I couldn't nudge more than about 5 pounds off my frame. And most of this was before chronic pain & fatigue slowed me down.

    I weigh nearly twice what I weighed when I was 20, but you know this "belly business".......

    At the ripe old age of 56, I STILL get people getting up to give me a seat on a tram in Melbourne - as long as I've got sunglasses on :cool: (to hide my eyes), because they think I'm pregnant (the eyes seem to be a dead giveaway to my actual age).

    I say to the person offering, I'm happy to be standing, because I've got bad back pain, but every now & then, I wait for a pregnant pause, and give a pregnant smile ;) & take the seat that's offered.

    Ya gotta love that offer, when you're 56!. :D

    My Doc says I should be flattered that people think I look young enough & COULD be pregnant.

    Sometimes I think........maybe they think......... that I'm old (you know the greyish hair bit). But actually my hair looks like it's been highlighted that way.

    Or maybe they think I look exhausted & if I don't get a seat on public transport soon, I will faint or expire completely (& in the past, I HAVE come close to fainting & actually had to get off the tram because of wafting strong perfume etc playing on my MCS).

    All I can say is...................

    "Well men, if you ain't got a butt for me to pinch, ya gotta give me a belly to lean against when I feel faint." :D

    :victory:
  7. HopingSince88

    HopingSince88 Senior Member

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    Maine
    age 20 - weight 118 lbs :Retro smile:
    age 30 (after giving birth to 3 kids) - weight 118 lbs :Retro smile::Retro smile:
    age 35 - weight 118 lbs :Retro smile::Retro smile::Retro smile:
    age 35.5 (3 months after CFS struck) - weight 175 lbs :(
    age 57 - weight 195 lbs :(:(
    most of the gain is in the belly :eek::eek::eek:

    BTW - I am 5'3" female
  8. serenity

    serenity Senior Member

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    Austin
    i'm 5'2 on a good day, haha, & was happpily 110 until a couple of years ago when the docs told me to gain weight. i did, & have not been able to take it back off. i'm 120 now i'd guess, not sure really - but not happy. from a size 0 to a size 4 pushing 6. crap.
    hair loss, dark circles under the eyes, can't wear heels or a bra anymore.
    ticked off about the whole thing.
    i care very much how i look. still make the effort to dress nice & have on at least some make up before i go out.
    but it's gettin harder all the time.
    :(
  9. Sing

    Sing Senior Member

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    New England
    Thanks, everyone, for sharing so frankly. It makes me feel as though I have company here in this way too. I'm nearly 61 and my body has become embarrassing. I am not overweight but my midriff is swollen due to digestive problems and gas. Have collected fat and flab there, so my waist is gone. The rest of me is thin but slack. No more short sleeves. My leg veins swell and show through. I always have to wear support hose and only long pants in the summer. I can no longer tolerate anything tight or it causes increasing pain, so no bra or earrings or tight waistbands. Have also lost tolerance for most warm materials, like wool, fleece, all other synthetics and nubbly thick cotton. Only soft cotton or down jackets are good for any length of time. The cold weather was challenging!

    I'm starting to date a new man who is very kind but I think I am going to keep clothes on for the rest of my life.
  10. serenity

    serenity Senior Member

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    Austin
    well, i know we are all beautiful - no matter what this dang illness has taken from us. i know what you mean sing, i can't wear anything but a very tiny necklace or it's too heavy for my neck. it really is limiting, especially for me as i am a fashionista.
  11. dannybex

    dannybex Senior Member

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    Kelvin and Cort, I can relate. 6' 2" and have been as low as 153lbs. Probably 149 w/out clothes. I know, too much information...

    But I got up to 167 or so about a year ago, but have lost muscle again, am now back to 160 or so. Sitting on bones. What worries me is losing not only muscle, but cartilage, tendons, other connective tissue. If only medicaid would pay for tests like the methylation panel, or decent CDSA panels...

    oy.

    Best regards,

    Dan
  12. Sing

    Sing Senior Member

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    Dan, I'm sure I am losing connective tissue too. My vertebrae grind and height is going down now. Also have osteoarthritis taking off. Hip replacement surgery coming up in less than 2 weeks--YIKES!

    But what I want to ask you is, why do you think you/we lose connective tissue too? This worries me most, as weight can be lost or gained, muscles can come back, but can connective tissue come back?

    Sing
  13. kerrilyn

    kerrilyn Senior Member

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    I shouldn't be delighted to hear others struggle with weight around their middles. ....I'm sorry....

    For the longest time I honestly didn't think I could have CFS because I heard/read that CFS patients were skinny - and I'm not skinny! Ditto on the connective tissue issue.

    Good luck with your surgery Sing.
  14. lucy

    lucy Senior Member

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    The last doctor I saw, an infectious diseases specialist, was telling me usually CFS patients are not skinny. What is the general tendency, is there any statistics?
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Sigh oh how true regarding the figure :/

    I'm 5'11", but have huge shoulders, 50" inch chest from weight training, did martial arts etc. For my part of the world, where most folk were quite small due ot poverty over long time (hence the locla regiment was nicknamed "The Poison Dwarves", lol), I was way bigger than normal.
    Weighed 200lbs back then one silly doc said I needed ot lose weight so I told him to actually look at me, and not just consult a chart with "recommended weights for ye Average_Joe_001" which I clearly was not :p

    Now though, I have "man boobs" and a gut, ugh.....

    used ot get dreadful sudden violent "dry heaves" when ME was bad, but never lost my appetite, in fact after I got testoserone shots, it got stronger
    I did lose most of my sense of smell to ME though, sense of taste seems much stronger though, oddly enough.
  16. kat0465

    kat0465 Senior Member

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    Hoping, we must be twins, i have one more inch on you but other than that, same here :(

    Kat
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm skinny. Can't gain weight. Have a good appetite. 5' 8" and 117 lbs. It has varied though over the years. At one point, before methylation supps, I weighed about 145.

    Who knows!

    Sushi
  18. ixchelkali

    ixchelkali Senior Member

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    :D:D:D Thanks for the good laugh, Kevin.

    One thing this illness has done for me is give me a different perspective on life. How I look is the least of my worries these days! Any day that I'm verticle is a good day, and I'm not going to ruin it by wishing I were thinner or less wrinkled or that my clothes weren't discount mail-order. Life's too short.

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