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

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  1. Dainty

    My Cure for Sound Sensitivity

    I'm so glad you found something that helped you. Thanks so much for sharing it! I had really severe hyperacusis that improved when the rest of me did. A lot of mine is/was tried to trauma. I still have pretty severe PTSD from my severe years and certain noises can still result in hyperacusis. A...
  2. Dainty

    housing options

    This is the reason I ended up on the streets. I was on SSI, which was just $733/month. Living in a vehicle was my only financially viable option to have any independence.
  3. Dainty

    ME/CFS Housing Co-Op

    You're replying to my post from 2 years ago! At the time of that posting, we had tried various spots, but unfortunately in this area arrangements like the ones you've mentioned are illegal. We're currently doing it, but if a neighbor complains we'd be kicked out by the cops immediately. It's...
  4. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Oh that's a really good point. A long drive like that would likely undo a lot of the benefits of treatment. I actually just spoke with an osteopath a couple weeks ago who told me she informed a patient she couldn't continue treating her unless/until the patient found a way to not have to drive...
  5. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Mary, that's a very interesting osteopath indeed! The fact that she's an MD but her site and her practice appear to be all about osteopathic medicine is fascinating. Yes, she'd be a great person to start with. I'd recommend calling her office, explaining a summary of your history and ask if she...
  6. Dainty

    Losing fragrance free options. Help bring it back!

    Thanks, @Gingergrrl ! Due to you're response and man others from my FB post I now have several to try out and steer folks towards. So far in my testing Almay's antiperspirant is stronger smelling than others but still seems to be a viable option. Thanks a bunch!
  7. Dainty

    Losing fragrance free options. Help bring it back!

    Thanks, Judee! I used to use milk of magnesia as a natural deodorant, I didn't realize some use it as an antiperspirant as it didn't work for me that way. :/ Thankfully there are a lot of fragrance free deodorants out there, but I'm building my consulting business on helping people find...
  8. Dainty

    Losing fragrance free options. Help bring it back!

    While many of us avoid antiperspirants due to aluminum concerns, I've encountered others who prefer antiperspirants and cannot give them up for a fragrance free environment. I used to mention Tom's Of Maine's unscented antiperspirant as the only option I could recommend without hesitation. But...
  9. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    We investigated that route prior to discovering cranial osteopathy, because I had many of the symptoms associated with it. Not sure how many years ago. The MRI was done and they said I did not have it. I have since been told that the MRI must be read by doctors familiar with Chairi Malformation...
  10. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Wayne, I'm always so happy to "see" you! I don't think I ever told you that you were instrumental to me realizing i needed to slow down. I recall a brief phone call we had a long time ago, before I learned how to calm down my nervous system, and it was clear to me that my wound up energy we not...
  11. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    From: Almost completely bedridden - could usually get to bathroom on my own and shower sitting on the floor, but also had paralytic episodes that would last a good 12 hours or more PEM that was generally delayed....the next day I would often be okayish, but approx. 48 hours later I'd completely...
  12. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    You're welcome, so glad it was helpful! I will ask around about a good practitioner in the Bay Area. I know I looked into it a couple years ago for another friend so I'll see if I can dig up the names again and PM you. I took a couple years off of seeing an osteopath due to fiances when I was...
  13. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Cranial osteopathy is a manual medical treatment administered by doctors with a medical degree and extensive training in anatomy and physiology. This training makes it possible for them to identify the root cause of a structural problem and treat that, which is often an entirely separate area of...
  14. Dainty

    In Memory of Dr Annie Macintyre who passed away last night 24th November 2018

    I am so, so sorry @Countrygirl , she sounds like she was a wonderful woman.
  15. Dainty

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Addressing structural issues impacting the base of my skull and other key areas was absolutely key to my recovery as well. I did it through cranial osteopathy, which is often confused with craniosacral therapy but is actually a much more involved medical treatment.
  16. Dainty

    I have not forgotten.

    My bridal gown was huge and gorgeous. And also impractical. I could hardly go anywhere on my own, and my dad had just told me to stay put or else the wedding guests would see me before the ceremony. Before he left I requested, for the third time, that he go find one of my bridesmaids for me. He...
  17. Dainty

    In Memory of Purple (Klara)

    I am so, so shocked to hear this news. I knew Klara only a Purple, and primarily from chat. She was in our small band of regular chatters, talking nearly every day. She always felt so strong through the screen, even though we knew she was struggling. RIP, dear one. You are part of what made...
  18. Dainty

    In Memory of Bob: A tribute from his friends

    I am speechless. Trying to find the right words. Bob is so missed.
  19. Dainty

    What kind of job does everyone have?

    @ToxxicWishes71 That sounds so scary, and I understand. I got sick at 13 and severe at 16. I am currently 29 and was unable to work at all until recently (was reliant on caregiver for basic necessities). About 2 years ago I started doing odd jobs for friends and family, then 1 year ago I began...
  20. Dainty

    Comment by 'Dainty' in 'Progress update 10/9/2017'

    Hey tooth! DO stands for Doctor of Osteopathy. In the U.S. they are full medical doctors just like MDs and can practice in any field of medicine with all teh same priviledges and experience of MDs. D.O.s that specialize in manual manipulative medicine, however, are like chiropractors for not...
  21. Dainty

    Earn $$$ chit-chatting online

    It looks like your current privacy settings don't allow me to PM you. Try clicking on my name, and with the bubble that comes up, click "Start a conversation." Once you've sent me something then I should be able to PM you back!
  22. Dainty

    Earn $$$ chit-chatting online

    Yep! I'm still doing this every week. PM me for the info! :)
  23. Dainty

    Eliminating scents

    If it makes you feel any better, my dream is to someday be the person you call to make the typical fragrance-y home tolerable for an MCS sufferer to be in without reacting. Now obviously each person is different, so that sort of thing will always be a bit of a moving goalpost. But after seeing...
  24. Dainty

    Eliminating scents

    Yes! And I'm also interested in helping you get rid of the smell more, too. I've got my mask and decontamination protocols, so I'll b fine. Plus, I want to gain more experience in eliminating fragrances. I could handle the rest of it for you so there's no need to crash?
  25. Dainty

    Eliminating scents

    I finally saw this thread! Late to the party, but HORRAAAAAY!!!!!! This one is going to be super tricky. If I can't even tolerate your area of the house, and this room is worse, I'm afraid to imagine it! Having no carpet DEFINITELY helps, so that's awesome. I have lots of ideas, not sure which...
  26. Dainty

    Do you need a book that teaches people how to be fragrance-free?

    I honestly don't know either, I'd have to try it! I have pollen allergies as well, so I think it'd be more likely to set that off. I use Cerave lotion too! :) I know of a few different options offhand. But first, I have known dentist who have said you actually don't need to use toothpaste at...
  27. Dainty

    Do you need a book that teaches people how to be fragrance-free?

    Good to know, thanks! Agreed! That would be incredible to have product lists from around the world! I do want to be really thorough in the lists, so going international would make that a bit more tricky for me personally. But maybe if I partnered with someone in the UK....wow, ideas. At...
  28. Dainty

    Do you need a book that teaches people how to be fragrance-free?

    Yes! It's a matter of consent. We have a choice about what food goes into our bodies. But we don't have much of a choice about breathing air.
  29. Dainty

    Do you need a book that teaches people how to be fragrance-free?

    I'm beginning to pull this project together enough to have a solid go at it, but I could sure use your help. If anyone has their own personal list of products that are safe for YOU, or safe to be used around you, I'd love to hear it! I'm also planning to switch over to an email list for updates...
  30. Dainty

    Do you need a book that teaches people how to be fragrance-free?

    I get this too! They think that if we don't like it, we're just forced to put up with it...but that really isn't the case. It causes immediate physical symptoms, that can last for hours or days in some cases. We need no fragrances period. Rant away! It really sucks to receive these types of...