• 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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    A Tribute To Rich Van Konynenburg

    I am yet another person who was touched by Rich - what a tremendous loss to the community. He was a great man, personally and professionally. I give thanks for his work daily, and wish his family and those who loved him peace and strength.
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    How do i get off the seesaw?

    Justy, the moment is all we have. There's a great book out there - Radical Acceptance - by Tara Brach. She also has/had CFS, and is a therapist of some kind and a teacher of bhuddism. It is a beautiful book, that really really helped me come to this point of view of accepting the simple reality...
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    2009 Chalder slides for Medically Unexplained Symptoms Talk.

    Did anyone else notice how most of her references are actually authored by ... her? The part that pissed me off more than anything is that they recommend that therapists avoid using the term "psychological" because they know it will piss patients off. I didn't know whether to laugh or cry, but...
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    No one REALLY gets it

    I know exactly what you mean! I spent my whole birthday in bed because I decided to let my family take me out for breakfast, after a very busy (for my standards) weekend. It was too much. Ah well. Again, though, they did it for the right reasons, and I did enjoy it. I just paid for it, that's...
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    There is no life

    All depends... how you define things... is that life? house, children, spouse, work, honeymoon? Life is so much more than that, and just because you don't have those things doesn't make it worthless. Our lives may be harder than most, and may be more limited than most, but we are still...
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    How do i get off the seesaw?

    A couple people have mentioned the feelings of guilt and denial. I think it's really important, in order to get the pacing right, to really accept the reality of our illness. It is very complex indeed, and frustrating, and I get really angry sometimes that no matter how much I do take care and...
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    ME/CFS Doctor List

    Anyone at the Environmental Health Clinic, Women's College Hospital, Toronto.
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    Does your Brain Fog Relate to, or Coincide with, your Post-Exertional Malaise?

    Lucy, I also find it harder to speak in Spanish when I'm brain-foggy, and I'm perfectly fluent most of the time. It actually takes more effort than it's worth. I wonder if that has to do with the anomia or dispraxia.
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    How long does PEM take to kick in?

    I don't get DOMS at all. Just the PEM. As to the onset on the PEM, it's pretty sudden. Just like initial onset was for me.
  10. I

    No one REALLY gets it

    It wasn't easy, but I did :) Listen, I beat myself up all the time for not being there as much as I'd like for him, and all that. All the time. But I try to keep things in perspective. That's all we can do, right?
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    Naturopathy- any effect?

    I'm in Canada, seeing a naturopath who does specialize in CFS, and is fantastic. I agree with ukxmrv that it makes a big difference how much knowledge and experience they have with the illness. The naturopath who treated me at onset was amazing, but was overwhelming me with a huge amount of...
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    How long does PEM take to kick in?

    I've found that it varies greatly, but will most often, when I REALLY push it, not kick in until the next day. Sometimes up to 48 hours. My solution is that when I make the decision to push it, for whatever reason, I make sure the following two days are totally clear. With lesser activities...
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    No one REALLY gets it

    Nielk, I had a really hard time with Pesach this year, too. I love Pesach - it's such a lovely time of year, and it's the time that my mom, my sister and I get together to plan and arrange and cook and beautify my mother's home... the last couple of years, our own children have been involved in...
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    Does your Brain Fog Relate to, or Coincide with, your Post-Exertional Malaise?

    I did not read all the responses in detail, but am answering the original questions. 1 - the brain fog comes and goes. 2 - it is definitely worse with PEM, although, it does appear without it. My PEM does not show quite as described in the original post, more like SickofCFS's, it's a general...
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    Dizziness/POTS questions

    Thank-you for the handout - very informative for me, my parents, and most likely for my doc. I wonder if my naturopath would know more, as she specializes in CFS... Anyway, thanks!
  16. I

    Dizziness/POTS questions

    Thank-you. That all makes a lot of sense. I will talk to my GP next time I see her.
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    Sound Sensitivity Causing Panic Attacks

    My biggest problem with this is that it severely limits my interaction with my family. My sister has three young ones, and I adore them, and they lift my spirits, but spending time with them, especially when there are also various adults around, is painful, and exhausting. When we get together...
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    Dizziness/POTS questions

    Another question: Is it helpful to actually have this diagnosed? I have a lot of the symptoms, and I know it's common in CFS'ers. I always thought it was just part of... but from what I'm reading here, it's a bit separate. I'm wondering now whether to bring it up with my GP and try to either...
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    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    Thank-you for this thread! It's made me laugh and groan and feel so very very happy not to be alone in this. I get the word thing really bad. I hate that. It really is like a piece of my brain just went offline. The brain fog is terrible for me. I've had a lot of those cant remember if I took...