• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. H

    Australian doctor working with ME/CFS

    Sorry for the delay in replying - the humidity here is really messing with me. Dr Mark Donohoe at Mosman Integrative Practice and Dr Richard Schloeffel are probable the 2 biggest names in Oz for ME/CFS. I think there are some other GPs at Dr Donohoe's practice who are also meant to be pretty...
  2. H

    Australian doctor working with ME/CFS

    A lot depends on what state your in, and if you're looking for a GP or an integrative doctor. There are some Aussie Facebook groups which often ask the same question - you may get more of a response there. Too brain dead to link them atm, but let me know if you want the names of them and i can...
  3. H

    BCG vaccination hypothesis

    Sorry, been out of action for a while. No, I didn't develop ME/CFS until 2013.
  4. H

    BCG vaccination hypothesis

    Interesting. I had the BCG vaccine in 2001 (working in health in an area with relative high TB rates). I was in the last university graduate cohort where it was given though, because the side effects didn't warrant the mandatory vaccinations.
  5. H

    Dr Chris O'Callaghan

    from what I understand Dr Richard Schloeffel is the main dr associated with Emerge Australia. I'm not sure if you're on Facebook at all, but there are a lot of posts re Dr O'Callaghan . Some people like him, others don't (which is pretty typical for any dr). Most people see him for POTS and OI...
  6. H

    HR surges after meals - blood sugar or MCAS?

    Like others, my heart rate rises after eating a large meal. My resting heart rate also rises by 30-50 bpm for anywhere between 4 and 10 hours after eating anything that is moderate to high carb content. The length of the rise spend a on exactly what I've eaten and how much. Needless to say I...
  7. H

    A treatment that helps me tremendously

    I love being outside in the sun, but it hasn't made any difference to my symptoms and can actually flare my POTS. I'm in Australia, so year round sun isn't an issue. I'm glad it helps some people though.
  8. H

    Niacin and Flushing

    I had the samecrwaction to niacin- flushing, hot rash and breathing difficulty. All the symptoms lltook several hours to go away. As for the elevated heart rate - my reaction was before I had POTS, but now it's not uncommon for my heart rate to be slightly elevated for up to 24 hours when...
  9. H

    Eye movements may be key to chronic fatigue syndrome diagnosis

    Interesting. When I had BPPV the physio treating me said my nystagmus was very jerky and that hes'd never seen anything like it before.
  10. H

    Anyone else feel the worst first thing in the morning?

    My cardiologist said it's very common for people with orthostatic intolerance yo be more symptomatic of a morning, and nany oeople i know with POTS say they are worse if a morning. Maybe a piece if the puzzle for you?
  11. H

    Scientists identify gut-derived metabolites that play a role in neurodegeneration

    Something similar on treating Parkinson's disease via photobiomodulation (targeting the gut-brain axis) https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-021-02248-y https://www.sciencedirect.com/science/article/abs/pii/S1353802016300669
  12. H

    "Coat hanger" neck/shoulders pain

    I use a trigger point ball - keeps the pain and tightness at bay most if the time. When it flares to the point I can't ease it (about once a year) it's off to the physio for dry needling.
  13. H

    Trigger Point Injections for Muscle Pain

    I also get a lot of pain in my neck and upper back, mostly trapezius and rhomboids but around the shoulder blade as well. I've never had injections but have dry needling via my physio when its gets really bad (about once a year or evrn less frequently), but I find daily use of a trigger point...
  14. H

    Symptom Presentation in POTS vs ME/CFS?

    Its hard to pull apart even when the symptoms didn't start at the same time!!! Over time I've worried less about what causes which symptoms, and more around managing the symptoms. Getting a diagnosis does help with this to an extent, but like everything else, trial and error reigns supreme 🤣
  15. H

    Symptom Presentation in POTS vs ME/CFS?

    One major difference I've found is heat intolerance. I used to love summer and the heat never bothered me for the first 5 years of my ME/CFS diagnosis. The heat intolerance is what led me to investigate POTS, because suddenly heat left me puddled on the floor. For me, the other difference is...
  16. H

    Ron Davis statement about NICE’s pausing publication of new guidelines

    That's it @heapsreal They're a research centre that forms part of Griffith University in Australia.
  17. H

    Today's a high HR day... Anyone else?

    Yep. If my heart rate gets above 120 just getting up and making a cup of tea, I know it's not going to be a good day. I dont know if it's the CFS or POTS that is the trigger, but I find they feed each other and I end up in a bit of downward spiral - increased heart rate equals more crashy, which...
  18. H

    No PEM after weeks on Valacyclovir

    That's where I got mine from. I can't remember what I paid at the time, it was a few years ago now
  19. H

    No PEM after weeks on Valacyclovir

    I did a combo of local script plus ordered the rest from an online pharmacy. I had no issues with delivery or quality, but it's still pretty expensive.
  20. H

    Unrelenting malaise and POTS

    Hi @Castorp, Sorry you are feeling like that. I don't know a lot about autoimmune POTS (I only have the garden variety type), but I do find that when I'm off my POTS meds the fatigue and malaise is worse than usual. Ive tried a few meds and some are better at relieving the fatigue than others...
  21. H

    To those who believe their ME/CFS began w/ EBV.....

    I think I'm one of the minority - I was in my 30s when I got EBV.
  22. H

    Does Anyone fear losing their spouse due to illness?

    Thanks @crypt0cu1t -It's good to have people around who can relate 😊
  23. H

    Does Anyone fear losing their spouse due to illness?

    We were together for just under 6 years.
  24. H

    Does Anyone fear losing their spouse due to illness?

    My partner left after I'd be unwell for about 4 years. It made a tough time even tougher. I'm glad to hear that there are some couples who make it work.
  25. H

    PEM delay, paralysis, and reflexes

    I have hypereflexia at the best of times, but it goes into hyperdrive when I'm in a crash. No idea why. An integrative Dr I once saw told me to increase my magnesium intake to help it.
  26. H

    Sore/tired eyes/eye muscles.

    I've been getting this quite a bit lately @bensmith. Closing my eyes for at least 30 mins at a time helps, but would love to hear other suggestions.
  27. H

    How are you ME/CFS-wise when cooking?

    I feel the same way. I'm starting to think I have an allergy to anything housework related- any cleaning/laundry jobs send my heart rate up :yuck:
  28. H

    How are you ME/CFS-wise when cooking?

    Cooking and doing the washing up triggers my POTS - it's usual for my heart rate to go up into the 130s or 140s which then crashes me out. I've pretty much given up on stove top cooking - if it can't be prepared in a slow cooker it doesn't get made.
  29. H

    Australians especially in Qld?, NDIS advice asking, update on wellbeing :)

    Hi @tabbyj29_11 I'm pretty brain fried at the moment but one thing that pops into my head is the document Emerge has on the NDIS. Have you accessed that yet? May help a bit, especially in regards to reports and the like
  30. H

    Does anyone with CFS get back to 100% ever?

    Likewise with valtrex for me! But at least valtrex is cheaper :)