• 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. E

    Any advice for plane travel?

    Ah, thank you. I tried using the regular search and couldn't find anything. The Google Site Search works much better, thank you!
  2. E

    Any advice for plane travel?

    I have to fly across the country this weekend, and I'm nervous. Ever since the ME/CFS hit, flying has been horrible - utterly exhausting, painful, and overwhelming, and it takes me forever to recover. Last time I passed out at the information desk and missed my connecting flight. Not fun. I'm...
  3. E

    Reality - vs - actually having a child if you have ME/CFS - decisions.....

    I have an 11-year-old stepson who lives with us on the weekends, and my entire life revolves around those days. I love him dearly and he's very understanding of my limitations, but it takes a lot of energy to take care of a kid, even when you stick to quiet, low-impact activities. I push myself...
  4. E

    Tingling inside head

    I get that sensation too, usually get it all through my body, not just my head. No clue what it is or how to treat it. But you're not alone!
  5. E

    Do anyone else's POTS symptoms flare up in the car?

    When I'm in a car (driving or riding), sometimes my POTS symptoms flare up like crazy - my heart starts racing, I get chest pain, nauseous, and dizzy. It always happens on long trips (over an hour) but sometimes even on short trips after only twenty minutes or so in the car. If I pull over and...
  6. E

    Any recommendations for SSDI lawyer in LA area?

    I knew it was coming, but it still sucks: my Social Security disability application has been rejected. Next step is the appeal and I think I need a lawyer. Does anyone have any recommendations for an SSDI attorney in the LA area? I'm concerned about finding one who actually understands ME/CFS...
  7. E

    To people with IC and bladder problems

    Oh you poor thing. I've had IC for about six years, without lesions, and for the first few years my bladder pain was constant with no relief after voiding. Main symptoms are bladder pain, constantly feeling like you have to go to the bathroom, which can also affect sleep, and pain/burning when...
  8. E

    How do you feed yourself?

    This feels like a really basic question but... how do you eat? Often I don't have the energy to cook, but delivery is expensive and a lot of packaged foods seem really unhealthy. Any tips for keeping myself fed? Thanks!
  9. E

    Newly diagnosed with POTS - any book recommendations?

    I was recently diagnosed with POTS, and I want to learn as much about it as possible. Does anyone have any recommendations for good books to read or other sources for research? With my brain fog, I have limited reading capacity and would really appreciate a nudge in the right direction.
  10. E

    New blog by ME/CFS patient: Chronic Drift

    Thank you - I appreciate the feedback!
  11. E

    New blog by ME/CFS patient: Chronic Drift

    I just launched a blog and thought y'all might be interested: www.chronicdrift.com. It's about muddling through life with ME/CFS and other chronic illnesses - things that make me happy when I'm crashing, words of wisdom from unlikely sources, imaginary adventures, and some serious musings...
  12. E

    How to Tell If I'm Sensitive to Mold?

    I've been very interested to read the accounts of some ME/CFS patients who were able to get better by avoiding mold. How can I find out if mold may be affecting my symptoms? Julie Rehmeyer, Jill Neimark, and Janis Bell all talk about spending 2+ weeks camping in order to detox before returning...
  13. E

    Social Security sending me to their doctor for exam

    I'm in the process of applying for Social Security disability, and yesterday I got a letter that "more information is needed about my condition" and they're sending me to a physician they picked. I'm worried that their doctor won't be familiar with ME/CFS and won't take me seriously, like so...