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    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. StrivingOn

    Experiences with sleep apnea treatment amd ME/CFS

    As much as APAP is better than CPAP, if someone else is paying (Medicare, NHS, whatever) you get what you're given. Self-funding APAP is expensive. I was diagnosed without a sleep study, just a pulse oximeter test. I started out with a CPAP, which helped but left me with large numbers of CAs...
  2. StrivingOn

    Experiences with sleep apnea treatment amd ME/CFS

    I echo what Bill writes. Getting used to a modern machine takes no time at all and difficulties are unusual. CPAP machines are fine for most people; APAP is needed in only a minority of cases with large numbers of CAs, like Bill and myself. Sleepyhead is free and pretty easy to use with...
  3. StrivingOn

    Experiences with sleep apnea treatment amd ME/CFS

    Apnea varies in its causes and severity. CPAP/BiPAP can help and modern machines rarely take long to get used to, but for each person whose life it transforms there are dozens who see a benefit that trails off after a few months or get little benefit in the first place. There are several...
  4. StrivingOn

    Antidepressants

    This is a subject dear to my heart. I have both ME/CFS and depression, but which came first isn't clear; I'd had the odd bout of depression over the years when the neurotic/unstable aspects of my personality struggled in times of stress and change, but I wasn't depressed when ME/CFS hit me. I...
  5. StrivingOn

    Oxygen in CFS

    What testing did you actually do? If it wasn't during a phase of air hunger/dyspnea then I suggest you get a pulse oximeter and a lung capacity meter to monitor yourself then. As an example, I had a growing feeling of dyspnea whilst lying down about 90 minutes ago. After sitting up and taking...
  6. StrivingOn

    air hunger/shortness of breath

    I have similar issues. I don't have any answers or tips other than to try Paracetamol when you have an attack, so I'm writing in the hope that adding my experience to the knowledge base will help. My air hunger is a feeling of suffocation normally accompanied by feelings of panic that vary from...
  7. StrivingOn

    What Is Your Body Temperature? Rethinking 98.6

    BTW to save a new reader delving through the previous 5 pages here, body temperature is far more complicated than people think. The normally-quoted 98.6F/37C is highly-misleading as that will vary by time of day (I vary by 1.3F/0.7C), gender (particularly as a woman's temperature varies...
  8. StrivingOn

    Pulse Oximeter Recommendation

    I am on my 3rd pulse oximeter over several years. I strongly recommend that, for anything other than casual checks, people spend the extra for one with a good downloadable recording system that fits on the wrist with a lead to a finger sensor. The recording system allows you to download to an...