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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. CFS_for_19_years

    Losing hope - my endo thinks I have Cushing's

    Thanks for asking. The chest pain was a one-time thing. It was very intense. Ordinary folks would have gone to the ER but I was in bed and trying to get to sleep when it happened, and I wasn't about to get out of bed then or the next day to get checked out. Lungs: I only breathe normally when...
  2. CFS_for_19_years

    Losing hope - my endo thinks I have Cushing's

    I don't have Cushing's but it's a long story how my cortisol values were at the upper end of normal. (More later.) I've become more bedbound lately and haven't left my home since Nov. 2017. I developed severe shortness of that came on over a period of about 2 weeks and I had an episode of...
  3. CFS_for_19_years

    Losing hope - my endo thinks I have Cushing's

    That's terrible! Do you then add CKD to their problem list and/or write something in their evaluation about their reduced renal function? Emphasize hydration? Say no to NSAIDs? My own doctor didn't think it was necessary to determine a cause when my GFR was bouncing between 50 and 60. It's now...
  4. CFS_for_19_years

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    I still think sinusitis should be placed much higher on the list. I brought up the topic in 2014. Too bad you're not a doctor @Hip, I think your priorities on the Roadmap would be different. While some may find your roadmap helpful, I think it is misleading in some respects. Here is the...
  5. CFS_for_19_years

    NIH Lead investigator promotes 'mental illness' theory of CFS

    This is old news. There have been many posts here about Walitt. Here's just one thread from March 2016; there are many others: https://forums.phoenixrising.me/threads/by-j-burmeister-keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability.43703/
  6. CFS_for_19_years

    How do you know if you have depression?

    FWIW I always feel better (not depressed) when I'm not hypothyroid. Your primary GP can get you started on thyroid replacement. You may not need an antidepressant if your hypothyroidism is adequately treated. I don't have the energy to look for references right now, but even if you were to...
  7. CFS_for_19_years

    Advances in Understanding the Pathophysiologyof Chronic Fatigue Syndrome (Komaroff, 2019)

    The full article is also available as a PDF on sci-hub: http://sci-hub.tw/10.1001/jama.2019.8312
  8. CFS_for_19_years

    Sharing Observations re PT Neck Traction

    I wanted to add something to my post above: I get the most relief from tight neck muscles when I force my chin into the foam cervical collar for just a second or two, and then release. Sometimes I can feel and hear some soft tissue pop or snap and that always feels good. I will repeat that...
  9. CFS_for_19_years

    Sharing Observations re PT Neck Traction

    A long time ago I discussed cervical traction with my chiropractor because he wanted to make sure that massage therapists were doing it right. Here is what he said: "When pulling back it is essential that the curve in the spine be preserved, so if the therapist is pulling straight back, they...
  10. CFS_for_19_years

    Anyone else improve at certain times?

    Go back and read the second post by Rich Vank and subsequent posts: https://forums.phoenixrising.me/threads/anyone-else-improve-at-certain-times.12269/#post-208318 Many of us have found our cortisol to be elevated at night. I've posted my salivary cortisol results from a few years ago. See...
  11. CFS_for_19_years

    My right jaw muscle

    A dentist or ENT can make the diagnosis of TMJ syndrome. Dentist can make bite guard to wear at night or even during the day if you want. If chewing is problematic, try switching to soft foods and don't chew gum. A dentist can also show you how you can massage the muscles around your jaw from...
  12. CFS_for_19_years

    10m test on treadmill as well as blood flow

    They may stop the test early if they find you've reached the top of your ability. They monitor heart rate and blood pressure throughout. I had a treadmill test decades ago and I recall the first thing they did when they stopped the treadmill was to put a chair under me and take my blood...
  13. CFS_for_19_years

    Latitude and CFS?

    Went from northern USA to Jamaica for vacation years ago with no improvement. Scenery was better.:cocktail:
  14. CFS_for_19_years

    Brain felt as if I was hit, or an explosion

    @Seven (formerly lnester7) I would really urge you to get to an ER as soon as possible.
  15. CFS_for_19_years

    Protein deficiency: possible root causes?

    https://www.drcourtneycraig.com/nutritionist-for-mecfs https://www.drcourtneycraig.com/blog/2016/11/1/special-dietary-considerations-for-severe-mecfs-patients-protein
  16. CFS_for_19_years

    UK online tool: 'Know Your Human Rights' (covers English law only)

    Similar tool, written for doctors: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/consent/part-1-principles https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/consent/part-2-making-decisions-about-investigations-and-treatment
  17. CFS_for_19_years

    Bad Sinus Infection: are antibiotics needed?

    @Zebra, if I were in your position I would definitely ask for Amoxicillin. Ask if you can get Amoxicillin with clavulanic acid, also known as Augmentin. The clavulanic acid helps overcome bacterial resistance. I had chronic sinusitis for about a year around the time my ME/CFS began. My...
  18. CFS_for_19_years

    Fibromyalgia and positional cord compression

    This is an interesting article that should interest anyone with fibromyalgia. It is written with less technical jargon.
  19. CFS_for_19_years

    Advice for learning to breath more deeply?

    I get it. The smell of chlorine is overpowering even for someone who is healthy. If you do swim, the smell stays in your hair and skin.
  20. CFS_for_19_years

    Advice for learning to breath more deeply?

    Are you able to swim? Try to hold your breath for a few seconds while doing the breaststroke or crawl. Instead of coming up for a breath when you normally would, hold it until you come up the next time, so that you are breathing every other stroke. This will encourage you to forcibly exhale...
  21. CFS_for_19_years

    Can anyone explain in English what possibilities my doctor is hypothesizing?

    P8. Reactive hyperglycaemia is elevated blood sugar levels that are controlled by insulin, which is affected by cortisol levels. I'm fuzzier on this aspect, but I think it means if you have proper cortisol levels glucose will enter your cells more readily, making you feel better. (Help me out...
  22. CFS_for_19_years

    American supplements may contain nothing.

    I've bought supplements that are well-known brands from sellers who have good feedback many times on eBay. There is no assurance the supplements have been stored at proper temperature. Expiration dates are usually posted or are visible in the images. These are some of the supplements I've...
  23. CFS_for_19_years

    American supplements may contain nothing.

    The three manufacturers that take part in the USP program are some of the "cheapest" brands available. Look for NatureMade, Kirkland and TruNature. Garden of Life is also very affordable.
  24. CFS_for_19_years

    American supplements may contain nothing.

    Four Websites List Quality Products and Companies http://www.supplementquality.com/testing/Quality_seals.html This one includes Before you give a black eye to American-made supplements, I would urge you to take a look at several voluntary programs that some American vitamin manufacturers...
  25. CFS_for_19_years

    Tracking CCI / AAI MRI & Treatment outcomes

    Posters please take notice of this. Thanks.
  26. CFS_for_19_years

    Poll: Have you Experienced Temporary Remissions?

    In January 2019 Dr. Robert Phair, a physiologist working with Ron Davis, had the following request: https://forums.phoenixrising.me/threads/the-ido-metabolic-trap-guy.62727/page-7#post-1027967 That particular thread had 25 instances where members discussed the topic of remissions. If you wish...
  27. CFS_for_19_years

    Poll: Have you Experienced Temporary Remissions?

    I'm fixing those right now. :headslap:I'll be right back!
  28. CFS_for_19_years

    Poll: Have you Experienced Temporary Remissions?

    I had a full remission for 2 to 3 days right after an acupuncture treatment. If I had needed to report to work on any of those days (mostly standing) I could have worked a full 8-hour shift. Since I wasn't working at the time, I did the next best thing - I went swimming. While sick I had...