• 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. hangininthere

    Hangininthere/Patti J.

    Sad to say, She passed away yesterday :( Awake but in no pain at 12:05 PM Just wanted to let everyone know here who knew her. Her Son.
  2. hangininthere

    Anyone have problems with Losartan?

    I had a bad reaction from Losartan the very first dose, so didn't take any more and the symptoms went away by the next day. My reaction was that I felt pressure all throughout my body head to toe inside and out, kind of like I would physically explode. Like sick all over. Don't know how else...
  3. hangininthere

    Anyone else sometimes just can’t speak?

    I've taken aspirin for real bad brain fog and it seemed to help. I keep forgetting to take it. I do believe the CFS theory that the spinal cord and brain (or brain covering?) are inflamed. Which I believe causes brain fog. I'm gonna try the aspirin for when I can't talk. Plus remember to...
  4. hangininthere

    Anyone else sometimes just can’t speak?

    That's what I go to the drive-thru for - cigs, haha. The fish oil works right away on my speech, oddly enough, like the same day. Recently, there was some other supplement that made me talk right for a day right away, but I forget what it was. And I haven't taken it since that one day, so...
  5. hangininthere

    Anyone else sometimes just can’t speak?

    Yes, I do it all the time for many years, ever since my CFS got way worse and I got cognitive problems and all. Can't get a word out when talking to someone, like a clerk at drive-thru I want to say my order to, or at home when having to make a business call or talking to hub or sons. Or else...
  6. hangininthere

    Severe fatigue but not pain -- do I still have ME/CFS?

    I consider the weakness without pain to be PEM. I get limp as a wet noodle and bedridden with PEM ever after my CFS got way worse at age 45. My orthostatic intolerance makes me weak in a different way than the exhaustion from too much physical or mental exertion, too. I especially hate when...
  7. hangininthere

    Severe fatigue but not pain -- do I still have ME/CFS?

    I didn't have CFS pain the first 27 years of CFS, from age 18 to 44. Then at age 45 I went way downhill and became bedridden and got the flu-like CFS pain and extreme debilitating fatigue and brain fog and orthostatic intolerance to this day at age 65. Patti
  8. hangininthere

    ‼ emergency, please help..need drug advice about prednisone or alternatives

    You can buy hydrocortisone cream over the counter at any drugstore or store like Walmart or a Dollar Store, or online. It's called anti-itch cream. Its main ingredient is a small amount of hydrocortisone. Ask a clerk to show you which aisle it's in. The store brands are very inexpensive...
  9. hangininthere

    Charcoal increased my energy immediately - what does this mean?

    Charcoal capsules perk me up from a miserable malaise by the next day. I believe it can work immediately, within the hour, because look how they use it in emergency rooms for ingested drug overdoses. It works immediately to save a life. Charcoal soaks up toxins fast. When we are laid up in...
  10. hangininthere

    Question about scents

    Most perfumes make me feel sick all over, but some don't. It's got to be because the ingredients do vary. Patti
  11. hangininthere

    Sleep apnea

    No sleep study. I only suspect because of the waking up with a gasp like my brother does who had a sleep study and can't stand to wear his machine and wakes up with a gasp at different times during sleep like I did. When I tried antidepressants, the waking up with a gasp throughout the night...
  12. hangininthere

    Sleep apnea

    Several years ago a high dose of Magnesium at bedtime every night eased what I suspect was my sleep apnea. When asleep, I would gasp and it would wake me up. I took 1,000 mg. Magnesium for a year for something else and the apnea cleared right up right away. Plus I woke up in the morning alert...
  13. hangininthere

    Wet sensation

    I've had that feeling a few times this year that my lower leg near ankle is wet, a cold wet, as if my pajama leg bottom hem got wet and touched my leg. It happens when I get up off the toilet and am washing hands, as if my pant leg got wet from floor, but the floor's not wet nor my pants or...
  14. hangininthere

    Trying to wrangle my Foreman grill

    I didn't have any luck, either. Cooks unevenly. And too much work cleaning it after. I tried lining top and bottom with foil to make cleaning easier. But cooks so unevenly. It's sitting in the attic storage. Patti
  15. hangininthere

    Tight Stretchy Belt For Orthostatic Intolerance

    Yes, I'm amazed the simple stretchy fashion belt works just as well. I discovered it by accident when I wore it to store to hold my thick heavy denim blue jeans up. If the belt's not real tight, they slide right down. I've never worn a belt in my life. These blue jeans are weird like never...
  16. hangininthere

    Tight Stretchy Belt For Orthostatic Intolerance

    The ladies elastic belt works just as well for me. And more convenient and comfortable. I only get dressed when I go to store or appointment. I can wear the belt holding up my blue jeans when driving and sitting. But I take it off and wear my pajamas 24/7 at home. Here's a picture from the...
  17. hangininthere

    Tight Stretchy Belt For Orthostatic Intolerance

    Yes, I just wear the back brace or tightened elastic ladies belt temporarily when I'm standing up shopping or in the kitchen. Then I take it right off again. I can't even wear the back brace when driving to store, too suffocating, too tight. I put it on when I get out of car and take it off...
  18. hangininthere

    My Search For Tinnitus Relief Led to Discovery Of A Unique Vagus Nerve Stimulation Technique

    I've suspected for a few years that my orthostatic intolerance is a vagus nerve problem. My ears ring constantly for decades, as long as I can remember, since adulthood anyway. I'm used to it, luckily not bad enough to impair my daily functioning or make me miserable. Aspirin and other...
  19. hangininthere

    Tight Stretchy Belt For Orthostatic Intolerance

    I'm so happy that member Wayne mentioned that an elastic back brace could help Orthostatic Intolerance. I have never wanted to try compression stockings because I wear sandals. I recently bought a back brace and it worked. Then I bought a ladies elastic belt to hold my denim blue jeans up...
  20. hangininthere

    A Song for ME: Blowin' in the Wind

    Oh wow!!! Excellent!!! Love the photos depicting the view from our sickbed that we see years on end. So realistic. Wow. Just wow. Absolutely beautiful guitar work and lyrics and singing by all. "...how many voices must scream from the dark..." Patti
  21. hangininthere

    How did you finally get diagnosed?

    Yes, Chronic Fatigue Syndrome is a whole other beast. Patti
  22. hangininthere

    How did you finally get diagnosed?

    From age 18 when I got CFS in 1971, until sometime in my mid-30's, I just figured I had untreated depression. The rare times I went to family docs for something simple , I would mention how tired I was all the time. Mainstream blood work always tested normal, so that was that. Then at the...
  23. hangininthere

    Huge problems with fall asleep and turn off my brain from day to day - please help

    Since the racing thoughts have started in recent weeks, try backtracking by discontinuing all the supplements you're on and see which one(s) may be causing the racing thoughts. Even a supplement you've been on for a long time without ill effect can start causing a bad reaction. Sometimes a...
  24. hangininthere

    ANXIETY, PANIC ATTACKS

    I, too, feel the effect within minutes when taking certain medicines or supplements. Seems impossible, but it's true for me, too. I don't think it's psychological - I couldn't conjure up a different feeling out of the blue. I've read of what's called 'the placebo effect', but I'm not that...
  25. hangininthere

    Whats The Point?...

    I just take supplements I've read about on CFS support groups, to help ease my symptoms a bit, and to help me rest a bit more comfortably. Patti
  26. hangininthere

    What do I ask my General Practitioner to be tested for?

    I just self-treat by taking supplements that I've learned about from CFS support groups. From what I've read on CFS support groups, I think to see CFS specialists you have to pay cash. My state Medicaid did pay for my rheumatologist who took a special interest in CFS and diagnosed my CFS and...
  27. hangininthere

    Ben H on the guitar

    Absolutely beautiful! Patti
  28. hangininthere

    Considering flu shot

    Yes, I read this recently too. That this year's flu vaccine is now said to be 36% effective instead of the originally predicted 10%. My sleep is all messed up. I sleep in dribs and drabs, in small increments 24/7. I gave up trying to be a nighttime sleeper. I just sleep whenever I fall...
  29. hangininthere

    lithium experiences

    My son and I take over-the-counter Lithium Orotate occasionally as needed for a day or two for our bipolar disorder. We just need it every few months or so, not often. We take one pill - "5 mg. (from 125 mcg. lithium orotate)" as it says on the pill bottle. I take it when my thoughts are...
  30. hangininthere

    Diabetes Meds

    I take Metformin for my Type 2 Diabetes the past 5 years. Nearly the highest daily dose. It hasn't helped my CFS. I noticed at first that it seemed to calm my bipolar a bit, kind of like a mild tranquilizer. I googled it and saw it can do that. A bad effect I have, though, is that it has...