• 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. Ellie K

    Doctor nearer Pittsburgh PA than California?

    Hi! Welcome to Pittsburgh. Thank you for the info I will definitely look into Dr. D'Eramo!
  2. Ellie K

    Doctor nearer Pittsburgh PA than California?

    I have had cfs for 7ish years and have been seeing the docs at Stanford's CFS clinic (Montoya, Bonilla etc) but I just moved to Pittsburgh. I am hoping there is another doctor closer to me so that I don't have to go across the country every year for a drs appointment. So far I have an...
  3. Ellie K

    Doctor near Princeton

    I am going to be moving to Princeton this summer and I am trying to figure out if there is a good cfs doc nearby. I currently go to Dr. Montoya's clinic at Stanford which has been good, but is a little far from New Jersey... I only have appointments every 3-4 months and about half are over the...
  4. Ellie K

    Google health recommends a psychologist and GET to treat CFS/ME

    They still haven't changed this... is there more we can do besides just submitting feedback? This could be doing real harm to people who will not get appropriate help as a result of this misinformation (while also harming all of us because the public understanding of cfs won't change while this...
  5. Ellie K

    Kick scooters and electric bicycles?

    I have an Urb-e which is a completely motorized scooter, folds small, is light and has a low center of gravity so not too tippy. It has been good (mostly) for the past over a year. I ride on sidewalk because I don't have the attention span to feel comfortable in the street and have had no...
  6. Ellie K

    Valtrex: what should I expect?

    yeah, I meant 3-4 months
  7. Ellie K

    Introductions

    @heidii I would also like to talk to someone around my age who might understand better what I'm going through :). I think the way to PM is through "conversations", but you have your privacy settings too strict for me to message. These can be changed in the "privacy" page when you hover over your...
  8. Ellie K

    Introductions

    @heidii I totally agree about the weird balance between trying to not just be the ill friend and acknowledging that CFS really does have to influence basically every decision I make. We are a similar age, and I think for me at least it is difficult that my friends are all getting to go out into...
  9. Ellie K

    Monitoring symptoms

    Since asking, I've done some more digging. I think I will try chronic-illness.com which seems nice because it lets you put in your own symptoms to track. My only concern is it might be slightly clunky to use, but I'll give it a go :)
  10. Ellie K

    Monitoring symptoms

    Does anyone have a good way to monitor symptoms? I have tried some things like a diary and various apps, but I always find that I can't stick to them when I am tired. Does anyone have a system that works (preferably one that lends itself to easy statistical analyses)?
  11. Ellie K

    Valtrex: what should I expect?

    I had no side-effects with valtrex, but I also had no benefits from it... I was taken off of it in around 3-4 b/c my doc said that was when I could have expected an effect.
  12. Ellie K

    Products that make your life easier?

    Oh another product I really like is my pill organizer. It holds a month of twice a day pills, isn't too big (but could hold a lot of pills), and each day's pills are in a container that can be taken with me. It takes longer to load than a weekly container, but I was always finding myself...
  13. Ellie K

    Introductions

    My answers: 1) Length of illness: 2 years 2) Doctors you currently see: Dr. Montoya (really his PA Jane Norris) at Stanford 3) Favorite hobby/activity/subject: knitting & languages 4) Treatments you've tried: I did basically everything sleep related (cpap, adderall, modafinil etc), I did an...
  14. Ellie K

    Introductions

    Hi guys, I think it would be nice to have a little intro, and easier to write & understand if we use a template, so how about: 1) Length of illness 2) Doctors you currently see 3) Favorite hobby/activity/subject 4) Treatments you've tried 5) Age 6) Anything else you want to say? Of course feel...
  15. Ellie K

    Does anyone know of a CF/ME support group in the San Francisco Bay Area?

    I'm in el cerrito. I'm a patient at stanford, and would be interested in some kind of local support group, I tried one from meetup.com, but it was for all chronic illness & the fit just wasn't right. It seems like in this thread at least there might be enough interest to make something happen...
  16. Ellie K

    drinking meal replacement shakes/soylent instead of eating?

    I saw a nutritionist for a while and pretty persistently asked about meal replacement shakes because I have no appetite and no energy to cook and eat anyway. She was clear that it is okay to replace about a meal and a snack a day, but there still has to be significant solid food for your gut not...
  17. Ellie K

    Products that make your life easier?

    The product that is making my life easiest is the urb-e bike(urb-e.com). This is essentially a motorized scooter that goes ~15mph for 20 miles/charge. I can't drive anymore, and while I can still walk some, I can't go long distances, but a power wheelchair felt excessive. This makes it possible...
  18. Ellie K

    Meeting with HR for disability, advice?

    Thank you all of you for the advice!!!! I feel much better prepared now
  19. Ellie K

    Meeting with HR for disability, advice?

    I have been sick for about 2 years and it is starting to get to be too much to work full time. I am meeting with HR Monday to talk about my options for reducing my hours, do you have any advice for what I should ask about/push for? I work at a university as a researcher. I'm only 21, so anything...