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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. serenity

    waking up at 1 am with continous adrenalin like surges

    be sure to mention it to your doc & check to be sure it's not sleep apnea. i think it's pretty common for us, but i had a sleep study to be sure to rule out apnea & think anyone with sleep issues should. it's not fun, but i think it's needed.
  2. serenity

    Anyone have issues with continuous hair loss?

    my meds cause hair loss. i have gotten myself some extensions, & will consider a wig if needed. i tried to come off the meds but just got too sick, so i find other ways to deal with the hair loss. it can be very upsetting.
  3. serenity

    "So you're really faking it?!"

    what a terrible thing to say, i am really sorry. we hear so much of that kind of crap, it's really bizaar. why would anyone think we would fake something like this? good for you for doing your best to go & be there for your friend. you deserve praise, not stinging insensitive remarks.
  4. serenity

    I wouldn't be suprised if this worked for CFS'ers

    yeh it's true - i have found groups who will not discuss illegal drugs, board policy. & i'm fine with that. i'm also fine with the fact that this group will discuss the issue openly. it took me a bit to get used to it, haha! but i am ok with it now :) (i am a recovering addict, so for me...
  5. serenity

    I wouldn't be suprised if this worked for CFS'ers

    can't say i loved the way i felt on them but of course i think i took way too much - we're talking back in my 20's (now i would never dream of taking an illegal drug.) anyway i wasn't a fan, but hallucinagens were never my thing. i have much stronger reactions to narcotics & benzos, which is...
  6. serenity

    Adverse reaction to acupuncture

    yes just be careful & start out small, obviously exercise isn't for everyone so dont' take my word for it - some here really can't tolerate it & there was a time when i couldn't either. how i suddenly was able to & it helped i do not know, but it did.
  7. serenity

    Adverse reaction to acupuncture

    all i can say is what worked for me - remember my primary diagnosis is Fibro tho... i execise gently every day. it helps me very much. i also gave in to meds, sleep meds & anxiety meds & antidepressants. so far i have not had to give in to narcotics for pain since my work out helps to keep...
  8. serenity

    Adverse reaction to acupuncture

    yeh i agree, i don't tend to think anyone is out to get me - just you know, they may believe in something that i dont'.
  9. serenity

    Cort: Happy Birthday To You!!

    oh it's your bday Cort? well HAPPY BDAY!!! :)
  10. serenity

    Adverse reaction to acupuncture

    i don't have an answer as to why it happened to you, yeh this doc was not good - tryin to sell me her potions & powders & mushrooms & stuff, told me "forget Western medicine" when i tried to give her my history. not cool. if i do acupuncture i want them to be able to understand a mix of...
  11. serenity

    Adverse reaction to acupuncture

    i did not have as bad an experience as you but i did not have a good one - having to sit in one position for so long, dealing with a doc i thought was a quack, seeing strange things like those little beakers they put on people that produce swollen red whelps (is that the word?) - it was all too...
  12. serenity

    Is it important to go to sleep before midnight?

    i try to head to bed at 11pm but this often gets pushed, i stay up as late as i want & my sleep doc doesn't seem to care - but i need at LEAST 10 hours & usually more like 12 or more.
  13. serenity

    Should Doctors Sell Supplements?

    for me, it's a no. i want things to be easy for those who need the supplements & for that reason i would support it, one stop not having to go elsewhere to buy is great for those of us who the tiniest errand can seem like a battle. but for me personally, i do not care for it. i am turned off...
  14. serenity

    where can you buy a comfy sleep mask?

    it works really well for me, maybe i dont' roll in my sleep? i'm not sure i think maybe i don't - i think ? sleep is such a mystery to me, i used to sleep very lightly & would have said that i was aware of it every time i rolled over even tho i do often. but i've been on sleep meds lately &...
  15. serenity

    where can you buy a comfy sleep mask?

    just to share a little trick i learned, the most comfortable sleep mask i've ever found is a pillowcase. mine happens to be silk i think, maybe even fake - but you can get any kind you want. i find it more comfortable than an actual mask as i could never stand the strap on the back of my head...
  16. serenity

    Dealing with noise sensitivity

    i have the same problem for sure, for me it is noisy neighbors. they have screaming children, barking dogs, blaring music... etc. it's hard, but i have had to fight to get some peace. i had to threaten to take one neighbor to court over the constantly barking dog. they finally stopped him. we...
  17. serenity

    I finally found good breads! Gluten free.

    like i say i am not strict vegan at all, nothing to worry about with me - haha! i'm very very loosely vegan, when i meant try i meant that is all - just give it a good shot but nothing cut & dry. i dont' really believe in cutting anything out completely. when i have a choice i will choice the...
  18. serenity

    I finally found good breads! Gluten free.

    i have some quinoa & i don't know how to cook it! what i have is not refrigerated, but maybe ya'll are talkin bout something else? we use Greenling organic delivery online, they have a great whole wheat shortbread to die for. & hemp milk. i try to be vegan, but i don't always stick to it...
  19. serenity

    I finally found good breads! Gluten free.

    i had choc before bed last night & it kept me up all night. :( guess i gotta keep the choc to before 5pm, which isn't really when i want it - but at least i can have it. so sorry you can't Sal. my morning staple is an apple with peanut butter. :) yes the stuff ya'll talk about buyin over the...
  20. serenity

    ME/CFS, THE MINI SERIES, by Mindy Kitei

    fun! :) i can't wait for the movie!!!
  21. serenity

    NEW! - UK DEPT. OF HEALTH to BAN ALL ME/CFS BLOOD DONATIONS from NOV 2010 (from MEA)!

    this seems like very big news yes? i wish America would follow...
  22. serenity

    Sensory Overload

    yes - my friends think i'm nuts but i am always right! i seem to see things that are very obvious to me & competely elude them. & it's exhausting, seeing so much all the time. i read some book i should give you the name of, let me find it... the Highly Sensative Person. it's an old book i...
  23. serenity

    Sensory Overload

    i'm sorry Tom, i sort of know that feeling - you may have it worse than me even but i count it among my worst symptoms. i mean, fatigue dizziness & pain are all worse to feel but the sensory overload is very distressing when you are tryin to deal with other people. it's as if you notice things...
  24. serenity

    xmrv + , how will we be treated by ordanary folks

    our vet is really good, i have said many times i would like for him to take a look at me instead of the pets - haha! ;)
  25. serenity

    Is it Not Possible for a Person with Chronic Fatigue to have Fibromyalgia?

    i think they are the same basically, i was diagnosed with fibro but i no longer have much pain - i exercised it away. but now i feel mainly fatigue. & dizziness, more foggy, more the CFS type stuff - but i can still exercise so??? you know, you tell me. i have no idea what to call it (i...
  26. serenity

    Modes of transmission of XMRV - MRVs

    Omer, i know this sounds unrealisitic - but a girl who really loves you wont' care.
  27. serenity

    I think my CFS is gone....back to work?

    wow, that is a tough one. i am lucky not to have to work & have no desire to, but i have to admit when i start having a really good period i do start to think "what if" about whether or not i could work. i always think about how i'd do it & know i would keep it small tho. i am fortunate not...
  28. serenity

    Media Coverage of Dr. Alters NIH paper, post stories here

    a short mention on the air, well that's something. but i gotta say, i'm starting to be concerned with the lack of interest too now. humn, really a roller coaster of emotions isn't it?
  29. serenity

    MAY BE REPOSTED ME ASSOCIATION SUMMARY AND STATEMENT ON LO et al PAPER:

    this is just awful, i really feel for you guys. i certainly hope we are not already Old News!