• 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. I

    What kind of job does everyone have?

    Finished training mid 2017. Started my consultant / attending job then fell sick few months later. Sadly not much as changed since. Still living with my parents and housebound most days.
  2. I

    There will never be a cure for CFS...

    I've come to the realisation that there will never be a cure for CFS. I think it's mostly due to the fact that we don't even know exactly what we have. Despite the ongoing research, I somehow doubt that we all share the underlying biomarker. If they do discover a biomarker, it will be called a...
  3. I

    Orthostatic Hypotension Treatment Advice / Help

    There is a huge overlap between MCAS and orthostatic issues. Mast cells release histamine which dilates blood vessels, and thr blood pressure drops. In response, the heart rate increases to help maintain the blood pressure. So you may not necessarily need meds to target the POTS itself, if the...
  4. I

    Orthostatic Hypotension Treatment Advice / Help

    Was this a MD/DO you visited? I've never heard of 'Dysautonomia Orthostatic Hypotension Syndrome', but the heart rate increase of 38 and unchanging blood pressure is highly suggestive of POTS (postural orthostatic tachycardia syndrome). I have not heard of choline or panthothenic acid being used...
  5. I

    How did it start for you?

    Had mild viral symptoms before going to bed one night. Woke up the next morning with high fevers and extreme fatigue. Fevers eventually resolved but fatigue never left. Tried going back to work and had my first crash. Over the next month the familiar POTS, brain fog, and sleep disturbance all...
  6. I

    Gas and stomachaches following meals

    I am very surprised your PCP havent ordered a stool test yet. I would definitely ordier a stool test for micro/cult/sensitivity, ovum/cyst/parasite, multiplex pcr (testing for viruses), calprotectin(for inflammation), reducing substances (for malabsorption) and fat test. You may need other...
  7. I

    If only we knew a time frame

    Offtopic here, but I think one of the reasons that many doctors are suspicious of this condition (lack of biomarkers aside) is that there are many individuals in society who uses the label as an excuse for personal gains. My medical practice was located in a low socioeconomic part of town, and I...
  8. I

    No pain, doesnt fit criteria

    With Fukuda, I only fulfill 3/8 additional criteria. With Canadian, I dont have pain and this is apparently mandatory. With ICC, I dont have pain or neurosensory disturbances so I dont fulfil this criteria either. I definitely fulfill the IOM criteria although I am wondering if this is a widely...
  9. I

    If only we knew a time frame

    Right on. I think the not knowing is the worst part. A 5 year prison sentence is doable when you know the end date. Our condition is a life sentence with the possibility of parole after a number of undertermined years.
  10. I

    No pain, doesnt fit criteria

    Does anyone here get very little headache, joint or muscle pain? I am lucky that I dont experience pain much. However, this means I am always 1 point short of fulfilling the Fukuda, ICC or Canadian criteria for whatever this condition is. I do get the debilitating fatigue, PEM, swollen (but non...
  11. I

    New trial for couples with ME: partner to collude with therapist to ensure compliance

    Ugh. Every time I see CBT mentioned with CFS I just get so infuriated. Im sure there are a significant group of us who have secondary depression and CBT will help with that. But for the primary illness itself, hell no. I really wish investigators will stop reopening the psych casket.
  12. I

    Antistreptolysin O around 300 for 1 year --- antibiotics warranted?

    @Wonkmonk : just wondering, did you get any symptomatic imptovement at all from the antibiotics. My ASO titre has remained around 400 for the past 6 months, but antidnaseB was consistently negative.
  13. I

    Neutrophil and lymphocyte levels consistently changing. Is this normal?

    @i-lava-u : generally if the absolute counts are fine, I don't really pay much attention to the percentage. White cell differential counts can vary daily and the borderline 1.2 lymphocyte count can be just normal fluctuation. As the trend is decreasing, I would probably just recheck it in 4-6...
  14. I

    What kind of job does everyone have?

    I had just finished my medical residency when I got sick (was couple of months into my first 'real' job). Im now living with my parents and thankfully they are happy to support me for now. When I see what my uni debt is I just cry, but I got no real assetts so not much they can do at the moment...
  15. I

    What the H*** is Going On? I feel like I'm dying.

    Have you had an ENA (looking for antiJo1) and CK level. With your skin rash and muscle symptoms dermatomyositis springs to mind. As with other connective tissue diseases this can cause systemic symptoms including severe fatigue and dysautonomia (eg POTS).