• 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.


  1. MartinK

    How I improved from very severe to moderate in 14 days

    I haven't been here for a long time because I was going through the most challenging time of my life. I began to suffer from extreme insomnia, which gradually worsened all my symptoms - pain, burning in the body, exhaustion. I was falling into a state where I thought I was going to die. And I...
  2. F

    always feel better at night, every day

    without fail for the past few years i've had this condition i've always felt better at night. i've even said if i had my night-time condition during the day then life would be a lot more tolerable. more enjoyment, more interest in things, more tolerance to fatigue and pain, less brainfog, a lot...
  3. linusbert

    correct sleeping position and orientation to improve on health

    claims this chinese sleep guru master. northern hemisphere folks should sleep, head to the east or east/south. southern folks, head to the west. his argument is, that the magnetic pull of earth magnet field is drawing on the blood iron and pulling blood to the head which isnt ideal. if this is...
  4. SWAlexander

    New study links 14 genes to ME/CFS

    A study has analysed existing genetic data in a new way to link 14 genes to ME/CFS and identify many patient subgroups. If the new approach pans out, it could transform ME research and turbocharge the development of treatments. Paper: Genetic Risk Factors for ME/CFS Identified Using...
  5. C

    Non-Restorative Sleep in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Fibromyalgia and Chronic or Long Covid is A… (Aguirre-Chang et al, 2022)

    Non-Restorative Sleep in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Fibromyalgia and Chronic or Long Covid is Associated with Immobility which Causes Stasis or Stagnation of Blood Flow and Hypoperfusion. Investigations and treatments should be directed at the vascular level considering...
  6. Woof!

    Has anyone tried an Avocado mattress?

    Hey all, from the achy-breaky back and neck department... It's time I got a new mattress for my bed. Has anyone tried the newer Avocado Green mattress? I love that they're from organic materials, and pretty darn non-toxic* to boot. Unfortunately, there are no stores within a 4-hour drive of me...
  7. RyeRyeBread

    Waking up feeling like I've crashed [PEM] in my sleep?

    I've been waking up [from naps and general overnight sleeping] feeling like I've crashed in my sleep, and been a little caught off guard because I didn't think I was going to- Anyone else? When I crash/have a PEM episode, I usually have a whole handful of symptoms that occur, as somewhat of a...
  8. E

    Anyone else feel the worst first thing in the morning?

    I feel worst (fatigue, lightheaded, generally not good) first thing in the morning when I wake up. I usually sleep around 8-10 hours per night. Never suffered from insomnia as many do, I always had the opposite of sleeping too much. I usually wake up and just have to lie in bed for an hour...
  9. SNT Gatchaman

    An attempt to explain the neurological symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021, Wirth et al)

    An attempt to explain the neurological symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Klaus J. Wirth, Carmen Scheibenbogen and Friedemann Paul Link Full text link Abstract There is accumulating evidence of endothelial dysfunction, muscle and cerebral hypoperfusion in Myalgic...
  10. frozenborderline

    Dealing with major amounts of hypersomnia, need help

    So I had some episodes ofnhypersomnia pre surgery but they were more limited and different than what I'm experiencing now. My sleep wasnt usually deep in a refreshing way, I often felt unpleasant and like I was gasping for air when I woke up. It also was just less consistent hypersomnia and...
  11. frozenborderline

    Getting an accurate Pulse Oximeter

    I need accurate pulse oximeter for a few reasons. One being I am recovering from pneumonia outpatient. Two being I'm on. Big doses of pain medications, and sedatives , which combined can certainly lead to hypoxia. I used to have one that had an alarm if pulse or oxygen went too low or high...
  12. GlassCannonLife

    THC or CBD oil for sleep?

    I am about to trial some THC oil to help with my sleep. I currently take a multitude of supplements to try and help with it, but still wake multiple (5-10 or so) times during the night, sometimes struggling to fall back asleep. Most recently, I have also started having episodes of restless leg...
  13. V

    What are symptoms of autoimmune encephalitis?

    I have a vague knowledge of it and have seen various posts scattered, so was wondering if those who have been through it can say some more about how it presented in them. Also interested in whether there is any connection to that and, for lake of a better term, (new onset) "neuropsychiatric" (I...
  14. R

    GERD exacerbating insomnia

    For the past several months I've seen a flare-up of insomnia, including great difficulty getting to sleep (sometimes not until the afternoon of the next day), irregular heartbeat, and nausea. Acidic foods, caffeine and spices all exacerbate it. It seemed to trigger after being placed on...
  15. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Piggybacking off https://www.mechanicalbasis.org/ + https://forums.phoenixrising.me/threads/have-you-ruled-out-chiari-or-craniocervical-instability-cci-as-a-cause-of-your-cfs.56908/#post-945253 , a story of a man that suffered CFS alongside POTS...I'm inspired to sort out my body, especially...
  16. overtheedge

    Are there any doctors who work with sleeping pills other than psychiatrists?

    I've been working with an ENT for a while now who has been prescribing sleep medications to help fix my insomnia. I've tested the four or so sleep meds he's Rx'd with partial success but after telling him this last med didn't work he says he's out of his depth and the only doctor he can...
  17. SeanQHX1

    Cyclical Alternating Insomnia/Sleeping

    Hi everyone again! I can't say I've had much to report regarding my illness, it's been more of the same, only increasingly worse as time progresses with most of my symptoms. But recently my insomnia seems to have went from week long episodes to a more chronic/intermittent state. Before, there...
  18. Sarah94

    Mannan oligosaccharides (MOS)

    Has anyone taken a supplement containing "Mannan oligosaccharides" (MOS) (it's in some probiotic supplements) and did you get any bad effects from it? I'm trying to work out what's causing my sudden terrible sleep for the last 3 nights. I started the supplement containing MOS 3 days ago (it's...
  19. Y

    Superficial sleep as a side effect of CBD oil

    From time to time I take CBD oil, which improves my mental state. But because of this, my nighttime sleep worsens: it is difficult to fall asleep, and sleep becomes shallow. Has anyone managed to eliminate this side effect with any medicine?