• Welcome to Phoenix Rising!

    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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Search results

  1. E.man

    Turmeric/Curcumin for ME/CFS?

    Wouldn't it be nice if we didn't have to experiment on ourselves.
  2. E.man

    Easily out of breath

    Don't think deconditioning either. Not for me. Got this as new after 16yrs of ME. There's a lot of new anxiety with it I never had before too.
  3. E.man

    Carnivore Diet for ME?

    No idea. He does what makes him feel better. He's also on experimental trial drugs. With both of us being sick and living far apart we don't share all the details but have found corresponding diet details.
  4. E.man

    Carnivore Diet for ME?

    N=2. My brother has ulcerative colitis. He found eating meat better than veg. Veg had too much fibre.
  5. E.man

    Is ME/CFS a Rich Man’s Disease?

    Isn't that how the US system 'works'. I wouldn't go extending it to other jurisdictions.
  6. E.man

    Will I get worse with time? honest answer please

    Don't do those things that make you feel worse later. It means you've gone too far and your body is hurting and telling you not to. Mountain climbing !!! (Bloody hell ).
  7. E.man

    Endocannabinoid system role in ME/CFS

    Fun if you're in the US ?
  8. E.man

    Endocannabinoid system role in ME/CFS

    Lots of Aussie research but now cbd oil imports are banned. Domestic sale for consumption banned too. What a farce. If they don't have a 'pharma' product apparently we're not allowed anything else that helps.
  9. E.man

    Medical gaslighting finally is being recognized by the mainstream press

    As a male pw ME I was well ignored by the female hospital triage. Yeah. It's all around . We're not being taken seriously but we're seriously suffering.
  10. E.man

    When they can’t find something.

    Yes. We know. We see you. If you can get online join 'millions missing ' and help us all get noticed. You'll find some ME/CFS Facebook groups too.
  11. E.man

    ER refused to treat me

    Sadly you are not alone. Almost passed out at my GP. She sent me straight to hospital who basically left me to suffer. After I made a written statement I received a phone call apology. Would prefer proper attention in the first place.
  12. E.man

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Interesting observation thanks @Mary . I'm not drinking grapefruit juice as a constant. I'm drinking it with co q10 to get more upright for longer for a day when I have to go out. Something of a juggle given the time lapse. I seem to get disturbed sleep too. Would be easy to go and do too...
  13. E.man

    Chest wall pain and fatigue

    Getting upper chest pain after worsening of symptoms. Thoracic back has tightened up too. I would be trying intensive physio for mine if it was available and I could get to it.
  14. E.man

    Why is the UK so barbaric when treating ME

    In regional Australia there is very little, as mentioned above. My GP who does recognize ME sent me direct to local hospital from her practice who then ignored me. Two page written statement got me a spoken 'apology'. Should have got it in writing but didn't think of it. Social security in...
  15. E.man

    High THC Cannabis - Sleep inducer and MCS Buster (!)

    From years of occasional smoking I will agree any dependence is psychologically based. In my case not really very strong either. Whenever I see examples of physical dependence it involves combining the ganga with commercial tobacco products that have actually been designed to promote...
  16. E.man

    High THC Cannabis - Sleep inducer and MCS Buster (!)

    Don't know about MCS but the rest is "yep ". It's a sedative so will relax the body. For many it will relax the mind also. ... zzzz. Nice :) Still illegal here and we can get big problems if tested positive for use if driving for about 2? Months after use.(fat based drug stays in body thus...
  17. E.man

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Time delay on this gave me nervous energy and buzzing fidgets half way through the night and that was from a breakfast and lunch dose.
  18. E.man

    Constant belly bloat

    Are you taking pro biotics ?
  19. E.man

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    I'm not in a familiar head space as it is with my symptoms having got worse recently and causing a review of living situation. Was taking Co Q10 by itself. Might have to go back to that to reset .
  20. E.man

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Grapefruit juice. Not good in the AM but picks up PM after this has come on. Depersonalisation in the PM too which gets worse into the evening. Not a nice feeling. Head all odd feeling. This after about 3 days.
  21. E.man

    How to get started

    Good spread. Doesn't display right on my phone tho.
  22. E.man

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Started a few days ago. Initially felt improvement but now got badly down.
  23. E.man

    Australian ME/CFS Good Doctor List

    Digging this up. Any in Canberra ? (Even closer to Bega would be good ).
  24. E.man

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    "Red grapefruit juice " ! Bloody hell. I still haven't found any type of juice. (End of the world here........apparently ).
  25. E.man

    Reach for the smelling salts: New paper 2018 to prove that abnormal beliefs cause ME disability (!)

    Heart is a muscle. Mine started struggling recently. Searched on PR and found thread with same symptoms. Am going to try more magnesium to help muscle function. (My ecg was perfect. )
  26. E.man

    A2 milk - helpful?

    My brother and I got to a2 iindependently. Seems right for us.
  27. E.man

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Didnt even see a ny juice in supermarket. So bloody generic white bread.
  28. E.man

    Hospital

    Yeah sux. I'm pretty in line with you here except I have anti nausea pills that keep that back. New blood results show low b12 & testosterone & potassium. First two add to being wiped out and other is something about heart. Sick with no help. ...
  29. E.man

    Hospital

    Glad you went and got some help. I think we get so used to suffering we give up on asking for help but it can reach a point when some help is really needed. I went with collapsing, cardiac and dehydration. Was sent by my own doctor who phoned ahead to the doctor on duty both who were good...
  30. E.man

    Hospital

    Not so acute but now I have a whole new level of hurt. It didn't take long to find the new problems on here. Not happy.