• 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. AndyPandy

    A crashing story

    Hi there @heapsreal Good to see you back here. I’m not on here very often either. Just pop in from time to time. Hope you can get hold of the Famvir again soon. I might have told you this before but I met someone with ME/CFS who told fibs to a new GP about having genital herpes and needing to...
  2. AndyPandy

    Weird ridges on fingertips, anyone else?

    I have “pruney” fingertips and vertical ridges on my nails. Only since ME. No EDS.
  3. AndyPandy

    CFS Discovery Clinic

    It looks like that was in January. Now they are closing.
  4. AndyPandy

    CFS Discovery Clinic

    It’s bad news. Not sure what other options we have in Victoria or Australia more generally.
  5. AndyPandy

    CFS Discovery Clinic

    I’ve just received an email from the CFS Discovery Clinic in Melbourne advising that Dr Lewis is retiring and the clinic is closing. All of his upcoming appointments are cancelled.
  6. AndyPandy

    Yuppie Flu

    So tonight I was out and about at a function and having a conversation with someone who I had previously thought of as intelligent and well informed. He referred to ME as Yuppie Flu. I was shocked. And angry. And disgusted. I immediately called him on it and asked him never to call it that...
  7. AndyPandy

    Income Protection Insurance Australia

    @Haley Maurice Blackburn used to be associated with Emerge and said they offered legal advice to ME sufferers. I referred someone from PR to Maurice Blackburn some years ago for a disability insurance claim and they were able to help. I suggest you contact Emerge as a starting point.
  8. AndyPandy

    Do you lose your voice when you crash/PEM?

    Yes. When my voice starts to go I know I’ve well and truly overdone it.
  9. AndyPandy

    Guardianship Order

    @Diwi9 @taniaaust1 It’s probably best that Tanya explores what Guardianship entails and also gets some independent legal advice about Guardianship and other options that might be available and the pros and cons of each.
  10. AndyPandy

    Guardianship Order

    @taniaaust1 So the Office of the Public Advocate (OPA) manages guardianships. Here is their website which has some information about their role. It includes some information about how they gather information about the individual’s preferences and how they include the individual in decision...
  11. AndyPandy

    Guardianship Order

    @taniaaust1 Sorry Tanya I’ve only just seen this thread. I don’t know much about Guardianship in South Australia. It would be good to get some legal advice about what is involved and what the risks are for you. It’s difficult when you really need help to manage certain aspects of your life...
  12. AndyPandy

    Blepharitis, Dry Eye, Corneal Abrasions................

    I use lubricating eye ointment multiple times a day as well as before bed and during the night if I wake up.
  13. AndyPandy

    Should I keep follow-up appt with endo?

    @Mary I wouldn’t go. The effort involved, the cost to you financially and a likely health crash to follow. And the extremely low likelihood of him offering you any useful medical advice. I just don’t see any positives here. Time to move on.
  14. AndyPandy

    starving with keto

    @Berzerkerina I have type 2 diabetes and I’m currently experimenting with Low Carb High Fat. The site diabetes.co.uk has a lot of useful information and tips for people with diabetes. Best wishes
  15. AndyPandy

    In Memory of JBoneske

    @Jboneske2 My heart goes out to you and your family. I will remember Jeff and toast him and your family on his birthday. Much love Andy
  16. AndyPandy

    In Memory of Dr Annie Macintyre who passed away last night 24th November 2018

    So very sorry for your loss @Countrygirl. RIP Annie.
  17. AndyPandy

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    @Tally I have had many viruses and the flu a few times since I developed ME. They have made me very sick for months at a time. I have eventually recovered from the viruses and flu. That has taken me much longer than people without ME. My ME is much worse when I have a virus or the flu. My...
  18. AndyPandy

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    @Tally I’m sensitive to lots of meds. The flu shots made me sick even before ME. I was bedridden for quite some time in the early stages of ME. Even though I’m not as severe now I still won’t have flu shots. My GP supports my decision. I’ve survived the flu a few times in the past 7 years...
  19. AndyPandy

    back from seeing a neurologist and could use doctor names for help ,desperate

    @Gingergrrl Do you know of any decent doctors for @humanrising?
  20. AndyPandy

    back from seeing a neurologist and could use doctor names for help ,desperate

    We understand @humanrising I once went to a Rheumatologist. The appointment was for the senior specialist but I ended up with his newly minted assistant. He told me to drink Red Bull. And that I should be recovered in 3 months. Five years later I’m still significantly disabled and have to...
  21. AndyPandy

    back from seeing a neurologist and could use doctor names for help ,desperate

    @humanrising “I want to kick you till you bleed” So relatable. I hope you can find a decent doctor.
  22. AndyPandy

    New drs are painful???

    @Judee Thank you
  23. AndyPandy

    New drs are painful???

    @heapsreal He doesn’t have a diagnosis but has some symptoms consistent with ME. He previously had mono and his immune system is compromised with multiple fungal skin infections for the past four months or so. I’m keeping an eye on him.
  24. AndyPandy

    New drs are painful???

    Thanks @heapsreal
  25. AndyPandy

    New drs are painful???

    Hi @heapsreal My husband has shingles for the first time. He has been prescribed antivirals for the virus and also low dose antidepressants for the nerve pain. Is there anything else you can suggest might be of benefit? Thanks Andy
  26. AndyPandy

    New drs are painful???

    PS I recently met someone down here with ME who basically lied and said they had genital herpes so that they could be prescribed antivirals on an ongoing basis. Said they are lost without them.
  27. AndyPandy

    New drs are painful???

    Hi there @heapsreal Have you thought about approaching NCNED? I think they might have stopped operating their clinic but they might know of a sympathetic dr up there who might be more open to prescribing famvir. Best wishes Andy
  28. AndyPandy

    Easily out of breath

    @Jemima37 I have had ME for over 7 years. I have shortness of breath. Pretty much with any activity including showering, shuffling a few steps etc. I didn’t have this before ME. In my experience it is diffferent from anxiety which I rarely have. You might like to search PR about shortness...