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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. T

    Little jolts as you fall asleep?

    Yes. Your body is stuck in fight flight mode. It jolts you awake so you dont miss that a tiger is coming to get you. But obviously it's not.. our body just senses a danger so it's trying to protect you.
  2. T

    unrelenting flu feeling

    I am 16 months from onset. For me I had that daily in the beginning for months. It was horrid to say the least. I figured I would just stay that way. However after about 10 months it just started getting less and less. Now 16 months in when I get it...its way more mild and infrequent. The only...
  3. T

    2 weeks of constant adrenaline surges

    I get these alot too. I've been taking seroquel low dose to help me feel calm. I have anxiety and panic disorder so I often just attribute it to that but I do think it is some form of dysautonomia. .my cfs doctor tells me that when we are stuck in this fight or flight mode we need to do more...
  4. T

    increased heart rate going from walking to standing

    Hello did you ever find answer to this ? I'm having same issue.
  5. T

    Amitriptyline Poll - Does it work for you?

    I was on elavil 10mg years ago to try and treat IBD diarrhea. I did not hsve CFS at the time. Ive only hsd post viral fatigue for past 4 months. Doc just prescribed this to help me with sleep now but havent started yet. In past i had morning grogginess for about 3 days. After that i just had...
  6. T

    Amitryptiline / elavil

    Thanks. I have taken 10mg in past years ago but did not have this illness at the time. I had that morning grogginess for just few days and dry mouth. I tolerated well. I just was hoping it could help me now.
  7. T

    What do You think is your most disabling symptom?

    I relate to this. I am only 4 months in ..in the pvfs stage vs a cfs diagnosis yet. These flu symptoms are horrid. Ive never trued anything for them You think i should try antiviral ? Do you still get ?
  8. T

    Bad reaction from vitamin B complex anyone?

    I had loose stools in am and a bit of nausea
  9. T

    Fluish symptoms come and go

    I get this. I am not on any medications. It drives me nuts and always comes in aftrrnoon lasting the evening. Some days stronger than others and so.e days barely any. Curious how you are now? I am only 4 minths inthis illness so technically the PVFS right now
  10. T

    Amitryptiline / elavil

    Anyone on this medication ? Does it help any of your symptoms ? Im thinking of trying low dose at night to help with sleeping. I dont want to feel any worse though during the day. I get flu-like symptoms daily, weird toxic fatigue, fake fever, sometimes sore throat, irritated nose and chest...
  11. T

    Good day bad day .. a puzzle. Help

    I am wondering. Can your parents go to your place to help you out? My mother in law lives in our basement suite so i have been lucky to get her help with dinners during the week. I am not on an SSRI but i feel toxic and fatigued regularly. I get like that because of just being tired. The more...
  12. T

    Bed resting and heart rate

    Sorry for typos. Guess no way to edit once posted.
  13. T

    Bed resting and heart rate

    I feel best when I am.resting in bed. Problem is the longer I do this my heart gets used to being calm. When i go to get up and move my heary beats fasyer and pounds. I can avoid this if i dont bedrest all day. Its vicious. I need bedrest to help avoid crashes but i need to get up so my heart...
  14. T

    Post viral fatigue

    I started crashing again today sittingbin my recliner. I ate a bag of m&ms which i shouldnr have done. Then started feeling sick. So went to lay down in bed and the bedrest mafe me feel better. Not fully but def better than sitting in chair. Thing i hate about bedresting is that my heart gets...
  15. T

    Post viral fatigue

    Yeah i thought of that. I do soooo little. I dont know how to do less. I lay in bed from about 930 pm until 11am next day. Have a seated shower. Rest until noon in my bed. Then i get up make toast sit in chair all day until bedtime. In chair i fiddle on my phone alot playing games social media...
  16. T

    Post viral fatigue

    I also want to say. Im cognitively well. My mind is sharp. My attention span is normal for me. Im not sleepy per say but am energyless!. Im depressed badly because of this. Even have had suicidal thoughts because i cant see myself living this way. Not going to do it but i dont know how much...
  17. T

    Post viral fatigue

    Curious how many people on this forum are in the early stages called post viral fatigue. Under 6 months or even under a year ? I am 4 months and few days in. Curious how your progression has been this past year, how it started. How functional you are and what treatments you have tried? Any...