• 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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  1. S

    Tracking CCI / AAI MRI & Treatment outcomes

    Dr. B took my case and said one of my measurements was borderline as to whether surgical (in my measuring, it's horizontal Harris measurement, but I don't have a report yet). Said to try cervical traction with a physical therapist, also a lumbar puncture and if either is positive the next tests...
  2. S

    Ambition and ME/CFS

    The thwarted ambitions are so painful. So universal with this illness, but the contents of the ambitions we have had to let go of are so individual to each of us and so intertwined with our senses of identity. I do think the Protestant Reformation has a lot to answer for in terms of...
  3. S

    Ambition and ME/CFS

    Oh... my ambitions. Well, I still have a job that means a lot to me. I work from home with *extremely* flexible hours. I am concerned I am falling behind, but I would still like to at least do my job (maybe even well, but I'm losing hope of that). It is part of my identity too. I think these are...
  4. S

    Ambition and ME/CFS

    Edited: I posted this in the wrong subforum! Can someone move it for me? Thanks. A topic I've been thinking about, curious to hear others' experiences (with an especial welcome to more severe sufferers). Before ME/CFS we all had various ambitions to achieve various goals, even if the goal was...
  5. S

    Research on ME/CFS and Pregnancy?

    Little research on mecfs x little research on pregnancy = hardly any research on me/cfs in pregnancy. I bet you found the usual stuff from googling me/cfs pregnancy (various clinicians' experiences). My own experience: more tachycardia/intense malaise, including during labor and just after, but...
  6. S

    POTs Vs PEM

    Hey, just to resurrect this thread... I have POTS, sometimes a 50+ bpm rise on standing. I also have a diagnosis of ME/CFS. However, I just had a 2-day CPET and they came out exactly the same (!) though the second day was harder and my resting heart rate was much higher because of the previous...
  7. S

    A 50,000 Foot Overview of Major ME/CFS Theories

    I wonder how many subsets of these are (or can be made) consistent with each other.
  8. S

    How would you describe your brain fog?

    like my skull has been skinned and cracked open so that my brain is left open to every stimulus from the outside, and my mental muscles needed to grasp a thought are cramping so there is no grasping.
  9. S

    Observations & questions after a relapse

    I'll try to find it again, @AdamS
  10. S

    Observations & questions after a relapse

    Isn't there something about use of arms specifically and increase of respiration? Maybe linked to feedback between use of intercostals and respiratory center? I read this somewhere but can't remember where. POTS people are advised to keep elbows close to the torso.
  11. S

    25 Oct E Crawley speaking at Better Science Better Data event......

    a "lightning talk" is a thing in academia by the way - it's a very short talk associated with a poster
  12. S

    Questions Answered by Dr. Naviaux

    I want this on a t-shirt!
  13. S

    Anyone feel a little better at night?

    I feel better at night the same way and with my fitbit I notice that it corresponds to a drop in heart rate. Interestingly when I am a bit jetlagged traveling east I also feed good in this way for a couple of days, until I don't.
  14. S

    ME/CFS Fitbit Community

    Happy, I'm quite similar! And I use a fitbit. Would gladly join a group.
  15. S

    "Coat hanger" neck/shoulders pain

    I thought it was because the neck was trying to pump blood up to the brain? Don't know. It sounds like the right PT or acupuncturist might be helpful.
  16. S

    "Coat hanger" neck/shoulders pain

    Pain in neck/shoulders (hence "coathanger") associated with orthostatic/POTS symptoms. Trigger point massage makes it worse. I.e. a physical therapist once successfully released the muscles but 5 minutes later they seized up again worse than before. Anyone had this and found a way to work with...
  17. S

    Gender bias, MUS, Epistemic Injustice: the evidence

    or this... https://med.stanford.edu/news/all-news/2006/07/transgender-experience-led-stanford-scientist-to-critique-gender-difference.html
  18. S

    Gender bias, MUS, Epistemic Injustice: the evidence

    Very nice! Yes, I think we need to go experimental to make broad claims (where people have not left us convenient breadcrumbs in their writing).
  19. S

    Gender bias, MUS, Epistemic Injustice: the evidence

    Great! Ok. Right, so the question there is how do we know if doctors are or are not hallucinating stars? We're back to thoughts again (or "meaning" as you have it there, same idea). Or GWS (tends to occur mostly in plain-bellied sneetches). But as some have pointed out GWS has other...
  20. S

    Gender bias, MUS, Epistemic Injustice: the evidence

    I am foggily remembering some MUS nonsense which requires more "unexplained" symptoms in women to diagnose ...something... than in men, anyone remember where that comes from? Why did they do that? Probably to make the numbers turn out "right". But, thought experiment (with apologies to Dr...
  21. S

    Thought for the day

    "panic attacks"..."hopelessness and anxiety"..."lost strength and confidence" It does make it sound like a mental illness, doesn't it.
  22. S

    Things that show up in your lab results

    high glutamine. cpet (only one) indicating more dependence than expected on fat metabolism and slightly low max numbers. everything else normal.
  23. S

    Can anyone recommend a good wrist heart rate monitor?

    In the end I've gone for the fitbit charge HR - lack of alarms is a pain but otherwise I like it.
  24. S

    Did you have any problem with aerobic exercise before becoming ill? Like childhood?

    Add me to the list - red in the face, huffing and puffing and bringing up the rear. Could never really run. I really tried to exercise and did get rather fit in my 20s by going to the gym and doing weights and doing what my sis-in-law lovingly calls the "hamster machine". And then it all went...
  25. S

    Pacing with hr monitor and OI

    bp 110-120 over 70-80.
  26. S

    Pacing with hr monitor and OI

    Yeah, that's the thing. hr pretty normal (did fail a poor man's tilt table test, i.e. +40bpm between lying and 10 mins standing). bp pretty normal. blood volume? but why only when hr has come down? could a higher hr mask a blood volume problem? I don't expect there's anything to do about it...
  27. S

    Pacing with hr monitor and OI

    "low" in this context is around 73 bpm (this is fitbit's proprietary calculation of resting hr, something like a daily average over times they deem you to be resting)
  28. S

    Pacing with hr monitor and OI

    I've been pacing with a hr monitor (Fitbit HR Charge) for a month and change, and my resting hr has been going down. Which is good and I feel more rested but the lower it is, the more I feel woozy and headachy and orthostatically intolerant. I do normally but this is unusual. Anyone experienced...
  29. S

    Can anyone recommend a good wrist heart rate monitor?

    thanks everyone for your input. so am considering fitbit charge 2 hr vs. mio alpha 2 vs. vivosmart. I agree with @TiredSam that the vibrating alarm could be a cool feature to have. I wonder, since everyone else on the planet needs to be encouraged to exercise, does anyone know if these come...
  30. S

    Appt w/ New Doc: Which Research Papers & Documents to Bring to Prove ME/CFS?

    I've had bad experiences too. Today to my usual doctor I brought the press release from the ME Association on the ARHQ downgrading of the quality of the evidence for CBT and GET as well as the actual addendum on Pubmed. That seemed to go over well, but then she already believes me...