• 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. Jwarrior77

    Pupil Hippus Anyone? (Pupils constricting/dilating)

    Does anyone get bad exaggerated hippus where your pupils go back and forth from constricting and dilating? This is regardless of light hitting them. The pupils will keep oscillating back and forth. I swear I can even feel it do this and my vision will get shaky/jerky when its bad. I don't know...
  2. Fighttolive

    Does anyone crash after eating?

    If I wake up- have black coffee only, I can feel almost normal until I get hungry enough to eat. No matter what I eat- 45 mins later or so I come down with brain fog, lethargy, that distinct feeling you’ve been poisoned. infant, fasting with moderate exercise can actually fix me for a few...
  3. K

    Dysautonomia worse treating B12

    Hello all, It appears we finally have the right approach and my MMA levels are coming down. I have already upped my potassium. My dysautonomia seems to be getting worse. Anyone else experience worsening while treating? I suspect it’s the cells being created and nerves healing... at least I hope...
  4. ChookityPop

    Anyone resolved blood pooling?

    This is my biggest problem. If I can fix this, I think that I would be in much better shape. I have Pectus Excavatum which can mimic POTS and I think I will have to do the NUSS procedure in the hopes it can better my symptoms. I use compression, drink fluid, salt and Mestinon. I also have...
  5. F

    A Unifying Hypothesis of the Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS),,,,,

    A Unifying Hypothesis of the Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Recognitions from the finding of autoantibodies against ß2-adrenergic receptors Has anybody read this? I thought we tended more to low blood pressure than high (please correct me?). I...
  6. Pyrrhus

    Is SIBO caused by dysautonomic gastrointestinal motility?

    Small Intestinal Bacterial Overgrowth (SIBO) is a common diagnosis these days in ME/CFS patients. The most common reported symptoms are gas, bloating, and constipation, although there may be others. Diagnosis is often based on a breath test such as the lactulose breath test. Some people report...
  7. D

    Treatment for shortness of breath (air hunger)?

    I’ve suffered from shortness of breath for nine months. Probably the worst symptom I deal with. I’m asthmatic but my asthma was worse as a kid. It’s almost nonexistent now. What I experience now is different. I don’t wheeze. I just don’t feel like I’m inhaling oxygen most of the day. But my...
  8. pattismith

    Dysautonomia: "The finger wrinkling test can be used as a screening test before tilt table testing"

    Evaluation of the finger wrinkling test: a pilot study S. van Barneveld,1,3 J. van der Palen,2,5 and M. J. A. M. van Putten1,4 2010 Abstract Purpose Tilt table testing mainly evaluates the systemic cardiovascular part of the autonomic nervous system, while it is assumed that the finger...
  9. Murph

    Circadian rhythm abnormalities and autonomic dysfunction in patients with CFS/ME

    PLoS One. 2018 Jun 6;13(6):e0198106. doi: 10.1371/journal.pone.0198106. eCollection 2018. Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Cambras T1, Castro-Marrero J2, Zaragoza MC2,3, Díez-Noguera A1, Alegre J2...
  10. dangermouse

    Reaction to local anaesthetic

    This is the second time that I've experienced a reaction to local anaesthetic that was administered by my dentist. I become drowsy during procedure and afterwards (yesterday) I developed light headedness, severe nausea (still lingering), shakes and tremors. Vision blurred. The nurse gave me...
  11. Tammie

    air hunger/shortness of breath

    have had this symptom for awhile, but lately it is getting much worse - almost feels like I am trying to breathe carbon monoxide instead of oxygen anyway, just wondering if anyone has any good ways of dealing with this.....I have tried laying down and relaxing, and I have an air purifier in...