• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. purrsian

    Cannabis in Australia

    Good news - I am approved! I'm currently reviewing the links again that you guys posted. I also asked my local pharmacist how much he could order it in for and he said $320. The doctor had said the $365 was an old price as his leaflet was old and he hoped it had gone down. $320 is still...
  2. purrsian

    Looking for info on CCI/AAI diagnosis in Australia

    Awesome @MS49, hope it works out well for you and would love to hear how it goes! I haven't investigated any further yet as I've been busy trying to get TGA approval for CBD oil (success!) and I'm in Brisbane which is a tad far away. I've also had an increase in my sinus-type symptoms...
  3. purrsian

    Understanding content while I study, but completely unable to remember it

    Thank you, I knew fish oil was good but I shall add selenium to my list of things to try! Thank you, I've literally never heard of the first 2 and don't know much about the others, so they'll all go on my list of things to both research and try. I'm sensitive to medications but I'd never really...
  4. purrsian

    Looking for info on CCI/AAI diagnosis in Australia

    Hey guys, just wondering if CCI/AAI are being adequately diagnosis and/or treated in Australia yet? I'm in Brisbane and it's something I'd like to bring up with my doctor because I do get neck pain, particularly in the occipital region, and have other head/neck-related symptoms. But I wanted to...
  5. purrsian

    Understanding content while I study, but completely unable to remember it

    So this is something that has become a lot more noticeable for me in recent months. I'm studying acupuncture part time and am capable of studying for up to an hour at a time with short breaks in that hour. While I'm studying, I totally understand what I'm reading/listening to and I am actively...
  6. purrsian

    Experiences with Disability support (Australia)

    Oh and they prefer you to have been seeing the doctor who is supporting your application for at least 6 months - they don't really like 'doctor shopping'. I provided some blood test results such as the ones showing previous EBV infection and repeated deficiencies (like iron and B12) and my tilt...
  7. purrsian

    Experiences with Disability support (Australia)

    I tried and failed despite appealing as much as I was able to. They originally denied me for not doing cognitive behavioural therapy and graded exercise therapy, then on my final appeal (which is to someone outside of Centrelink) he decided that I shouldn't have to do CBT or GET, and would be...
  8. purrsian

    Cannabis in Australia

    Thanks @kangaSue, it's not a condition listed as an indication but he thought we would apply and see if it got approved as he thinks it could help. However, I've got an email from him asking for my previous tilt table test and any other specialist info I may have as the TGA has asked for that...
  9. purrsian

    Cannabis in Australia

    I'm just wondering if I could get anyone else's experiences of obtaining cannabis to treat CFS in Australia (either via prescription or uh...elsewhere...). It's something I'd really like to try due to my symptoms seeming quite inflammatory, and I was keen when my doctor suggested it. However...
  10. purrsian

    How long do you feel it took to adjust to lowering SSRI dose?

    I've been on fluvoxamine since I was about 18 (now 33) on doses from 50mg to 150mg (went up and down a few times in the first years before sticking to 100mg for the past 5-8 years). I was never diagnosed with depression and was put on it more for anxiety. It didn't really help much, but I've...
  11. purrsian

    Is there a time frame for Centrelink to process my appeal? (Aust)

    AAT has rejected my appeal. Centrelink's issue was that I wasn't fully treated due to no CBT. AAT guy agreed that CBT is not appropriate, but decided that I could not be ruled fully diagnosed (even though Centrelink was okay on that) because I haven't seen a psychiatrist to rule out depression...
  12. purrsian

    Is there a time frame for Centrelink to process my appeal? (Aust)

    New update. Last time on the phone (from the last message I wrote here) the lady asked if I wanted her to submit my review now or if I'll do it at a later date when I have more information. I say later. So obviously she submits it now. In the past few weeks I've had a lot on with exams and...
  13. purrsian

    Is there a time frame for Centrelink to process my appeal? (Aust)

    So, after almost exactly 6 months, they finally called me to say my appeal has been rejected due to not enough medical evidence from my own doctor. I did provide plenty of evidence about how CBT is useful for our condition, but I need my actual doctor to say that in my particular circumstance...
  14. purrsian

    My Job-Going Out Of Business.

    Always best to wait even a few days or a week, to sit with the decision and ensure you are happy with it. Good thinking. I'm really sorry to hear about your mum. Grief is hard enough to cope with for healthy people, it's extra draining for us. And yup, I totally understand the stress of the...
  15. purrsian

    Is there a time frame for Centrelink to process my appeal? (Aust)

    Yea, just the applications are hard enough for people as sick as all of us, let alone all the follow up calls, appeals, trying to get them to actually tell you anything, contacting local members or legal assistance for help... and yes, definitely not a good thing when the actually sick people...
  16. purrsian

    My Job-Going Out Of Business.

    I'm sorry you're having such a hard time. Health problems plus working for yourself sucks. I worked for my mum's shop and I know first hand the joy of customers that want everything for nothing. Especially when it comes to handmade or local stuff. Everyone wanted Australian ornaments (we were in...
  17. purrsian

    Is there a time frame for Centrelink to process my appeal? (Aust)

    Well for an update on my awesome Centrelink experiences.... I've applied for Newstart recently, as my fiancé is currently not working also (probably going to be moving in with his parents soon, as we're running low on savings!). I get approved for Newstart, starts payments on 29 Mar due to...
  18. purrsian

    Exercise making me Mentally tired, not Physically - why ?

    While we easily identify the energy required to use muscles, we often forget all the other things that use energy. Digesting food, using our brains to think, using our brains to process sensory stimuli, our body creating new blood cells/immune cells/all kinds of other cells to replace those that...
  19. purrsian

    Is there a time frame for Centrelink to process my appeal? (Aust)

    Well I spoke to someone who said they aren't allowed to give time frames on appeal decisions, but it has been too long, so she has put an urgent red flag on mine. I called up in Jan and someone told me they were putting it on a priority list, so it probably doesn't mean much! But the lady today...
  20. purrsian

    Is there a time frame for Centrelink to process my appeal? (Aust)

    So I lodged an appeal with Centrelink on 20/09/17 as they said my condition was not "fully treated" because I hadn't had CBT. Despite calling in Dec and Jan to see that the appeal was put in correctly and being assured it was now on a "priority list" because of how long it's taking, I still...
  21. purrsian

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    I have cut out all ibuprofen and the gut issues have decreased. No diarrhoea but still have nausea when I am most fatigued. I now take paracetamol plus codeine 15mg approx twice a week and paracetamol on its own maybe once or twice a week for headaches. I wish I could take codeine more often...
  22. purrsian

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    What kind of symptoms do you have in the rebound cycle? I'm finding it hard to identify if I'm having those types of symptoms, or if it's just sinus related and POTS. My doctor wants me off ibuprofen and codeine for 4 weeks and 2 weeks in, I'm already fed up with being unable to do much due to...
  23. purrsian

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    I don't remember if I've actually replied to this post in the past, but I definitely get benefit from ibuprofen plus codeine or paracetamol plus codeine. The dosage is only 8-15mg of codeine, depending on brand. However, I've had problems with nausea since about September (4 months) and...
  24. purrsian

    Low dose Naltrexone

    Well the up side to that is that SSRI and SNRI are the sort of drugs that like to cause problems, so it doesn't necessarily indicate your super sensitive to meds in general. But that does sound like a crazy reaction with the 2 days lost - although you mentioned memory problems so perhaps it was...
  25. purrsian

    Low dose Naltrexone

    Many of us start on low doses due to history of sensitivities to medications. Do you have this at all? For example, higher likelihood of side effects when starting various drugs, worse intensity of side effects, troubles with side effects when increasing or decreasing doses. I started slowly...
  26. purrsian

    Lightheadedness, pressure in head, headaches, sinus type symptoms

    Thanks, I do have to say that I feel it is very deep so sphenoid would make sense. I think it confuses doctors when I don't have the typical signs of sinusitis because I think it's just so deep that it doesn't really affect my nasal passages or even my cheeks too much. I'd like to try a good...
  27. purrsian

    If your doctor is clueless, direct them to the BMJ's Best Practice Summary for ME

    While it gives more grounds to refuse, these caveats still present in the document give welfare organisations like Centrelink a great excuse to still require you to undergo CBT before being "fully treated" and able to get welfare. I have been rejected earlier in the year for not being fully...
  28. purrsian

    Advice wanted about phenergan causing excess drowsiness

    Yea, I sometimes have plain nurofen with plain panadol, which is a combination doctors recommend for my finance's back pain. I find it helps if I actually have headaches or facial pain, but it doesn't help the usual foggy, pressure type feelings I get. I think it must be the codeine that gives...
  29. purrsian

    Advice wanted about phenergan causing excess drowsiness

    I have been prescribed numerous nasal sprays, but nothing has helped. I don't have the typical sinus symptoms and a CT scan showed no inflammation when it was all at it's worst. I have no nasal symptoms, only sometimes get facial pain and it's usually only mild-moderate, often occurs with...
  30. purrsian

    Advice wanted about phenergan causing excess drowsiness

    Hey guys, just looking for some info about using phenergan. I've been prescribed it for my sinus symptoms to try and get me off nurofen plus for a while (I have nausea and mild constipation, possibly from nurofen plus). I took one 10mg tablet at 7pm last night, seemed to have no effect and then...