• 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. HRManager

    r/CFS is the biggest shithole I've ever seen

    I think part of the issue is the recoil reaction to ivermectin due to the hulaboo surrounding it with COVID. People just automatically roll their eyes at the mention of it even though research has shown it to be a pretty good drug. Just not for COVID lol. I have experimented on myself...
  2. HRManager

    r/CFS is the biggest shithole I've ever seen

    This is where I am at. Had been able to pace enough elsewhere to continue working 7.5 hours per day. Then was hit by atrial fibrillation, heart failure, hypothyroidism and kidney disease (last two caused by that nasty fucking amiodarone). Now I am barely making it 4 hours per day at work and...
  3. HRManager

    Does anyone else experience this "Sleep intoxification"/hypnopompic confusion states

    I experience the first upon waking. In my dreams I run jump etc and rarely get tired :oh-dear:
  4. HRManager

    Products that make your life easier?

    I would like to try an ice bath. Looked them up on Amazon for shits and giggles. They really aren't too expensive... but the cost of ice would add up. An ice maker would probably be cheaper.
  5. HRManager

    Products that make your life easier?

    I use an organizer like this: https://a.co/d/7Iwyca3 Mine is a little bigger. I need a 4X daily with large slots for vitamins and gabapentin.
  6. HRManager

    A seemingly unexplored simple explanation for ME/CFS and my experiments with it

    How do y'all afford these machines.. I would love to try one but jeeeeezus they want $2000+ for them :cry: :cry::cry:
  7. HRManager

    Tonsils, Appendixes, Gall Bladders and ME/CFS

    I just saw an article that stated that scientists/doctors believe the appendix has something to do with the immune system... I had my tonsils removed at 28 (what a shit show that was.. way too old lol) My appendix removed at 34 after acute appendicitis I have a couple of small stones in my...
  8. HRManager

    Prof. Carmen Scheibenbogen Recommendation of nutritional supplements

    What amounts of the B vitamins??
  9. HRManager

    Saga of the semicentennial sick chick

    Its an easy way to make sure folk know how you feel about things :D :rofl:
  10. HRManager

    Saga of the semicentennial sick chick

    I take 400 mg of magnesium 2X a day plus what is in my multivitamin... I occasionally use spray oil of magnesium also. Should use it more regularly :whistle: I was only in the hospital for 5 nights - Got out on 9/5/22. I was not shock converted until 11/1 because they were trying to see if...
  11. HRManager

    Saga of the semicentennial sick chick

    No - the anuerysms are completely separate from the stroke. I think they are waiting on surgery until she gets to her max recovery from the stroke. I was admitted to the hospital on August 31, 2022 and converted on November 1, 2022. Thank you for recommendation of EKG machine. I did order...
  12. HRManager

    Anyone else a walking storm detector?

    Strangely... I tend to hurt less when it is cloudy and/or raining. I live in area that is about 900 feet above sea level in Illinois, USA.
  13. HRManager

    Saga of the semicentennial sick chick

    I ordered one of the 6 lead monitors.. thank you!!!
  14. HRManager

    Saga of the semicentennial sick chick

    One of the treatments for the heart failure (low ejection fraction) and atrial fib is a drug called amiodarone. It is a nasty med. It basically killed my thyroid and caused the Hashimotos. Now unfortunately, the synthroid I now have to take for the Hashimotos is 'linked' to atrial...
  15. HRManager

    Federal Schedule A for job

    Has anyone ever gone this route for federal employment in USA? https://www.usajobs.gov/Help/working-in-government/unique-hiring-paths/individuals-with-disabilities/ I would love to get a remote job through them so I could work from home. I think that would really help me. I approached my...
  16. HRManager

    Saga of the semicentennial sick chick

    Amen! Was an AMAZING concert with the BEST freaking tailgate party. Dream of the day when I will be able to go to another concert like that. Or even a Cardinals game in St. Louis.. And a great quote for dealing with the issues we deal with. I HAVE to laugh.. or I would lose it :rofl:
  17. HRManager

    Saga of the semicentennial sick chick

    I haven't even heard from the Endo yet.. going to Mychart the doc and ask why they can't. I just can't deal with this for months when it is preventable. Still feeling the more severe exhaustion and confusion. Working about 4 hours a day then going home and collapsing. Making lots of atypical...
  18. HRManager

    Saga of the semicentennial sick chick

    So I am seeing from reading! That is great. I wish my GP would just prescribe the meds without having to wait months for an endocrinologist appt. It was mainly the feeling of 'dayam.. kickin a bitch when she's down' :bang-head: feeling of adding the thyroid to everything else lol. My 17 yr...
  19. HRManager

    Saga of the semicentennial sick chick

    Sorry I wasn't clear.. couldn't see through all the brain fog ;) BOO! I did NOT have COVID - it was all the fluid I was retaining in my lungs because of the atrial fib. The doctor didn't really say why I suddenly developed it. My mother has it so it might be genetic? I AM overweight which is...
  20. HRManager

    Saga of the semicentennial sick chick

    Forgot to add: While I was taking Cardizem - a calcium channel blocker - I had a whole month of NO PAIN. It blocked ALL my fibromyalgia pain. YEAH! After my conversion, that was the med they took me off of. BOO!
  21. HRManager

    Is your worst fatigue in the morning too?

    Mine are worse in the afternoon/evening. I start dying off at work about 1 or 2 PM
  22. HRManager

    Saga of the semicentennial sick chick

    I have had a bit of a health roller coaster for the last few months. Background info: I am currently 50 years old Dx figromyalgia 2009 (symptoms for many years prior to) Dx CFS 2012 In August I had to travel to Louisiana because my best friend had a stroke. She wanted me to take care of her...
  23. HRManager

    Anyone have good - or bad - expereince with gabapentin?

    I do not think it has any effect on my sleep since I take it 4 times a day. Overactivation? Don't think it helps. Does NOT help with my arthritis pain - ortho in knees and newly in hands. I unfortunately do not know what my dopamine levels are. What test finds that? I am also on...
  24. HRManager

    Bateman Horne Center: Suzanne Vernon and Dr Lucinda Bateman form an ME/CFS/FM Center of Excellence in Utah

    @Redtruck99 The company responsible for the med in the fibro trial is Virios. I found this on their website: https://ir.virios.com/news/press-releases/detail/79/virios-therapeutics-study-featured-in-peer-reviewed It mentions a medication called IMC-1. "MC-1 is a fixed dose combination drug...
  25. HRManager

    Anyone have good - or bad - expereince with gabapentin?

    I have fibromyalgia and it really helps with the 'nerve' pain from that. I have been on it for years and currently take what is basically the max does - 600 mg 4 X daily.
  26. HRManager

    Dissolving implant for pain

    "The biocompatible, water-soluble device works by softly wrapping around nerves to deliver precise, targeted cooling, which numbs nerves and blocks pain signals to the brain. An external pump enables the user to remotely activate the device and then increase or decrease its intensity. After the...
  27. HRManager

    Poll: Are you going ahead with a Booster vaccination?

    Already did. I had a lot of side effects with the Moderna vaccine so I got the Pfizer for my booster. Hardly any side effects! A headache for a day and sore spot on my arm. Any future recommended boosters will also be Pfizer for me.
  28. HRManager

    Poll: Are you going ahead with a Booster vaccination?

    My vaccination was Moderna and I had some bad side effects. Was in bed for 3 - 5 days each dose. Got Covid arm on the second. I had the Pfizer as my booster on Saturday. Some gastro issues on Saturday and slept most of Sunday. Back to work today. I took extra D-Ribose and ubiquinol. And...
  29. HRManager

    Any stories of remission from Magnesium IV/Infusions?

    Magnesium helps a lot with my fibro pain. I find a mix of oral and transdermal (I use lotion or spray oil) works the best. I don't know if its just because I feel better, but I do have more energy when I remember to use my lotion or oil.
  30. HRManager

    Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    Very interesting reading "We here provide an overview of treatment trials for prolonged intensive care unit (ICU) patients and theorize about their relevance for potential treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Specifically, these treatment trials generally...