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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Tammie

    What do you think of the IOM's new name for ME/CFS? VOTE!

    There should be a "WORSE than the status quot" response. Based on the many responses i have seen to the various news articles about this, people used to think that we were just tired, but now they think that we are lazy. Neither is good, but I'd rather be labeled tired than lazy, even though I...
  2. Tammie

    no lactobacilius instomach but can't take it...and other gut issues - any suggestions

    Thanks for your reply. I am definitely interested in more....GI problems have not improved at all
  3. Tammie

    no lactobacilius instomach but can't take it...and other gut issues - any suggestions

    sorry I haven't been here much at all yet and now am writing a lengthy post, but I have been barely functioning, and am really discouraged now Has anyone else had major issues with taking probiotics? I tried them 3 yrs ago and they made me feel horrible, stopped taking them and most of the...
  4. Tammie

    How is everyone? (& update on me)

    sandgroper, do you know , by any chance, what they used for anesthesia for your endoscopy? how bad of a relapse did it cause?
  5. Tammie

    How is everyone? (& update on me)

    thanks for the replies....Trisatn sorry you are leaving but glad you a re doing well...Wasp sorry your crashing, too.......Gary, hugs back atcha....and sandgroper welcome - glad you are joining us
  6. Tammie

    How is everyone? (& update on me)

    Unless I am missing something I haven't seen any new posts in awhile, so I thought I'd see how everyone is doing. I have a month and a week and a half without using ED behaviors (yes I am counting every last day!), but I have been also stuck with only eating pretzels becasue everything else...
  7. Tammie

    questions re endoscopy

    I have been having a ton of stomach issues and have had various tests run and have tried supplements and meds, and am now at the pt where I have to have an upper endoscopy. (I have been avoiding it as long as possible due to major PTSD related fears and also due to fears regarding how sensitive...
  8. Tammie

    Feeling ill and working on acceptance.

    crashing myself, but wanted to send some supportive hugs
  9. Tammie

    struggling - coming here to be accountable

    oh ok, Tristan.....I thought that maybe I hadn't been clear I am glad that you have been able to stay away from your addictions : )
  10. Tammie

    struggling - coming here to be accountable

    Tristan, I was actually just writing about ED bc WaSP asked about it........I agree that from what I know of the 12 step programs they are probably very similar.........I do know that I also attended ANAD grps for eating issues and they are run quite a bit differently than 12 step grps
  11. Tammie

    struggling - coming here to be accountable

    thanks tristan for the encouragement......I am doing a bit better today
  12. Tammie

    struggling - coming here to be accountable

    Emotions Anonymous is basically open to anyone dealing with emotional struggles....depression, anxiety, anger are of course common, but some people chose to go there instead of a more specific 12 step program, too, so there can be people with alcoholism, eating disorders, self injury, etc....and...
  13. Tammie

    struggling - coming here to be accountable

    Ka'ehu, thanks for "listening" : ) and WaSP, it does help to know that you are thinking about me.....such a huge part of the fears re being stuck in bed have to do with being so completely cut off from everyone and feeling like no one cares.....I mean there are obviously other big reasons it...
  14. Tammie

    struggling - coming here to be accountable

    also struggling becasue the crashing all week plus the test (though completely non invasive or anything) have triggered my PTSD and that really makes me want to resort to the ED bahaviors
  15. Tammie

    struggling - coming here to be accountable

    so after crashing all week, I have now been awake for 32 hrs straight, and since I had an ultra sound today (lots of stomach issues), and could not eat at all before it (and then had a counseling appt and then had to return library books) I did not get to eat until very late (& any time I eat...
  16. Tammie

    Surrender

    this week has been an exercise in surrender for me.....stuck in bed since Sat and hating it but trying to just go with it since I don't really have any choice anyway have had longer stints in bed and still resurfaced, but every time it happens I am so afraid that it will wind up being stuck...
  17. Tammie

    Saturday, July 30, 2011

    Massively crashing rt now so I can't really write, but just felt the need to quickly check in asn say hi.....also saw what you wrote, WaSP, and thought I'd mention that I kinda forgot about the no cross talk thing from 12 step meetings.....that's partially bc the online format is usually about...
  18. Tammie

    Thursday, July 28, 2011

    I haven't ever actually tried talking about ME in a grp meeting becasue when I used to go to meetings regularly, I didn't have ME. ME is a huge part of the reason why I relapsed with my eating disorder, though. I did try to go to a meeting since getting ME, but there are not all that many ED...
  19. Tammie

    Wednesday, July 27, 2011 Well, there are four of us!

    testing testing......it is working for me too
  20. Tammie

    Dealing with lost career dreams and goals

    I can totally relate to this.....my number one dream has always been to have a family, and thanks to this illness, that is not going to happen (I am now 6 months away from 40 and am not even dating bc I am too sick....no way could I handle children) as to career I also really wanted that and...
  21. Tammie

    When did you decide you had to use a mobility aid?

    The only caution I would mention re getting one used or thru insurance is to make sure that it doesn't weigh too much if you are going to have to get it in and out of your car yourself and to push yourself around.........there is a HUGE difference between a standard model and a light weight one...
  22. Tammie

    pres threatening to withhold aug ssdi pymtns

    Willow, no need to apologize.......While my intent in starting this thread was not to get into a policitcal discussion, I don't really mind that much either (though I sort of hoped it wouldn't, I kind of expected that it would)......my comment re the reason why I started the thread was merely in...
  23. Tammie

    When did you decide you had to use a mobility aid?

    If you just want to buy one, you don't need a script.....if you want your insurance to cover it you may need one I didn't know if I would be strong enough to wheel myself very well either but no way could I afford a scooter , esp given that I woudl then need a device to attacht it to the...
  24. Tammie

    When did you decide you had to use a mobility aid?

    NOT anyone who needs a wheelchair can get medicare to pay - it depends on if you need it for inside the home or not......I checked into this thoroughly and it has nothing to do with my Dr - they do a home assessment and if you cannot use it at home like me (my apt is not wheelchair accessible)...
  25. Tammie

    When did you decide you had to use a mobility aid?

    I'm diagnosed but I had to ask my Dr for a script for a walker....did that when I started having more problems with OI and I just got a wheelchair....didn't ask Dr about that bc medicare won't cover it unless it is needed inside the home (apparently never leaving the home does not matter to...
  26. Tammie

    pres threatening to withhold aug ssdi pymtns

    No, actually I did NOT misunderstand what was being said at all.....he stated that the checks may not go out if there is not an agreement on the debt ceiling.... ...I did not intend to start a political debate - I just wanted to say that I am freaking out about the possibility that the checks...
  27. Tammie

    pres threatening to withhold aug ssdi pymtns

    Sorry I don't have a link, but I saw it three different places and there was a video of him saying it so it is not just a case of things being spun to look that way.
  28. Tammie

    pres threatening to withhold aug ssdi pymtns

    Our Pres is threatening 2 withhold Social Security payments in August if no agreement is reached re the debt ceiling.....$ that the elderly & disabled have paid in & are counting on 2 live off of (& most can barely get by on it 2 begin with) may not be there in 2 weeks....going to be a bunch of...
  29. Tammie

    what is causing adverse reactions to SSRI class of drugs?

    some of us may have too much serotonin to start with and I have also read that these drugs can cause mitochondrial damage and since many PWMEs may already have problems with their mitochondrial function, this certainly would not help