• 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. PracticingAcceptance

    Doctors in and around London, UK

    Dr Bansal is retiring soon, I think at the end of the year, I'm not 100% sure. I have a final appt booked with him in the summer.
  2. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'All the things I've tried so far'

    I'm not an expert, but speaking from my own experience - the psychodynamic psychotherapist I had knew about Jung and Freud and that sort of thing. It's a kind of talking therapy where they interpret what's being said, and find patterns of what's happening now that stem back to childhood history...
  3. PracticingAcceptance

    Treatment and supplement survey on Twitter

    I've taken about 17/18 of those. Do they ask about each one, or each category? 11 out of the 20 categories... a fairly good spread... there must be people who have taken something from every single category out there.
  4. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'All the things I've tried so far'

    Thank you for asking @linusbert. That was an error from brain fog! I actually meant psychodynamic psychotherapy. I will correct it now :) It helped me process trauma, which helped my life immensely, without which I'm sure I'd be much more stressed in my daily life which would likely lead to...
  5. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'Introduction to myself - repost from a comments section'

    Awww <3 <3 <3 This really made me smile! I misread that as 'Fun With Pants', and thought that that might be high on the agenda too.... but maybe that's more of a 6/7 year old thing? Finding pants hilarious? Haha that made me laugh. So glad you got to play!
  6. PracticingAcceptance

    Introduction to myself - repost from a comments section

    Introduction to me - ME/CFS since 2016. Mostly housebound. Varied btwn moderate to severe to moderate-severe. - Designer, entrepreneur, management consultant, professional events. Do-gooder, thinker & doer, visionary (LOL can hardly believe that was me). Haven't been able to work since 2017...
  7. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'All the things I've tried so far'

    Hello @Jjplant. Earlier this year I tried a low histamine diet which involved cutting dried fruits. It made me really unwell and took me months to recover. I don't eat bananas often but I don't notice any effects from eating or not eating them. I generally don't eat much gluten these days, and...
  8. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'Initial appointment with Dr Bansal'

    You sound like you know more about this than I do. You'd have to ask him about that. I do find that it keeps my viral symptoms more under control - not perfect but certainly less sneezing and sore throats than I used to have. I used to have a blocked nose at night so much of the time so it's...
  9. PracticingAcceptance

    Anyone heard of Dr. Nikoleta Koini, of the Functional Medical Corporation?

    It looks like a pretty standard functional medicine website: https://functionalmedicalcorporation.uk/chronic-diseases/chronic-fatigue-syndrome/?ad1&gclid=Cj0KCQjwwNWKBhDAARIsAJ8Hkhf1FIXIOhgk9AdZJn3icQECHnZfZAyzq3YdwsDTcmww-avpQwezqYEaAsmEEALw_wcB Her viewpoint is that CFS is adrenal fatigue...
  10. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'All the things I've tried so far'

    @Irat thank you very much. Things have helped and I have made some positive progress, but I still would really like to be in a position where I could work and leave the flat whenever I feel like it. For a long time my aim was to have a romantic relationship and do more creative stuff, and I...
  11. PracticingAcceptance

    All the things I've tried so far

    First posted in summer 2021 Updated spring 2023 I recently put data about treatments I've tried into Stuff That Works to help build their database. They're hoping to identify treatments that work for subgroups. I thought it might be helpful to share my big old list here. I've split it up into...
  12. PracticingAcceptance

    Egg Freezing - have you done it?

    @gbells thanks - I am a bit confused about this information. I'm genuinely not concerned about my offspring having ME/CFS at this stage - it sounds like this is the part that you are interested in, though? What I'm concerned about is how I will react to the hormones during the process of egg...
  13. PracticingAcceptance

    Egg Freezing - have you done it?

    @gbells that's v sweet of you. Quora is an interesting idea... I find the responses are such a mixed bag, I'm afraid to post. I was thinking about calling up the ME Association tomorrow and finding out if they knew any hormone specialists... and that maybe even if I didn't pay to see one...
  14. PracticingAcceptance

    Egg Freezing - have you done it?

    I'm confused about your response - that is what I meant. Though I thought it was about checking genetics rather than infections. This is getting a bit off topic now. I know how egg fertlisation works. What I'm concerned about is how the process of doing it might affect me with ME/CFS.
  15. PracticingAcceptance

    Egg Freezing - have you done it?

    They're not getting heavier. For the first time in my life, they're well managed with tranexamic acid and mefanamic acid. They're regular too, thankfully. But yes, I'm aware that it can happen - my friend is 35 and is in peri-menopause. I'm really glad your daughter and granddaughter are ok...
  16. PracticingAcceptance

    Egg Freezing - have you done it?

    That's what I'm concerned about. I'm thinking of going on anti-depressants since I'm also starting therapy this week. If I can get my mental health to be optimal, that will help. I'll have therapy support in place. I'm also curious about whether I might find out something useful for ME/CFS...
  17. PracticingAcceptance

    Egg Freezing - have you done it?

    I'm thinking about freezing my eggs (I'm in my early 30s). My concern is how injecting myself with hormones in preparation might affect me. I'm also slightly concerned about the twilight anaesthetic and the physical egg scraping procedure. I would expect to have a setback based on just the...
  18. PracticingAcceptance

    In Memory of Patrick Johnson "PatJ"

    I've just seen the news and have had a big cry. I really barely knew him but to see someone's name so often and then to know they are not present in this world any more still hurts. The obituary and what his sister wrote is really moving. The bit about his handmade cards felt like a wallop -...
  19. PracticingAcceptance

    Have you tried ADHD medication? (Lisdexamfetamine)

    Ah @Judee that's disappointing to hear. I hoped they would work differently. I'm very sensitive to coffee - it makes my ME/CFS symptoms much better temporarily, then much worse for up to a week.
  20. PracticingAcceptance

    Have you tried ADHD medication? (Lisdexamfetamine)

    My boyfriend has ADHD and thought some of our symptoms sounded similar. He started looking up links between the illnesses and found that lisdexamfetamine, an ADHD medication, has actually been tested on ME/CFS patients with pretty good results. It is a small sample size though...
  21. PracticingAcceptance

    About to start antivirals — pointers?

    I hear that, and you'll probably be ok, but this IS a risk. Isn't there a way you could mitigate it? I didn't have any bad symptoms about my liver, so I wouldn't have known unless they tested me. Dr Bansal said I'm his only patient that reacted badly to acyclovir with my liver, and he's treated...
  22. PracticingAcceptance

    About to start antivirals — pointers?

    How is everyone doing on this thread? I was on acyclovir for 6 months and it really worked for me. I had more energy overall - I could do more, maybe 10% more consistently. The zapping pains stopped. I didn't feel that my limbs were so heavy that I couldn't move. It wasn't a cure but it did help...
  23. PracticingAcceptance

    Not sure whether to continue with Thyroxine

    @Sarah94 delighted to hear that. The side effects haven't been that great, hopefully they'll even out as yours did. :)
  24. PracticingAcceptance

    Not sure whether to continue with Thyroxine

    @Sarah94 how are you doing now - are you still on the thyroxine? I've just started on 25mg myself. Have been a little restless and hot, but I've noticed my body can move more easily and I can get a lot more done without any headaches. I'm feeling quite excited about it. I'm only a couple of...
  25. PracticingAcceptance

    Wet sensation

    @pattismith does a skin biopsy mean they cut a bit of skin off? I get very cold feet and hands, and it feels almost painful to be cold, so I have suspected SFN before. Since I've been on anti-virals, I stopped experiencing zapping pains and wet sensations.
  26. PracticingAcceptance

    D-Ribose

    I've just started on d-ribose. Is there anything I SHOULDN'T be taking with it? I read that taking protein supplements with it can affect absorption. I take quite a lot of other supplements: magnesium (evening, the rest are in the morning) Acetly L-carnatine cod liver oil Vit D N-Acetyl...
  27. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'Overwhelmed at December + ESA form'

    Thank you so much @Wolfcub , I very much appreciate your kind thoughts. :heart: There's a lot of advice out there about how to fill out the form - I recommend Benefits & Work, it's £20 to access all their guides which are good. It's just it's a lot of work for me and even with the advice, it's...
  28. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'Overwhelmed at December + ESA form'

    @southwestforests thanks but I think you've got the wrong end of the stick :) I do believe I have value. I cried way more than necessary yesterday, it wasn't necessary or useful to feel the despair I felt. Not sure what you're referring to about the other forum member, I hope all who were...
  29. PracticingAcceptance

    Comment by 'PracticingAcceptance' in 'Overwhelmed at December + ESA form'

    Thank you all so much for your kind words and support. @Wolfcub you're such a sweetie to offer to help. It's lovely to have your genuine support. I have to get Citizen's Advice to help with this form, or it won't be written in a way that the service approves of. It has to use the words on...
  30. PracticingAcceptance

    Overwhelmed at December + ESA form

    I've just had an unusually low moment. It's December and my second job to looking after my health is making christmas gifts. Nothing extravagant, just bath salts. My social calendar is full, with one modest social occasion a week (think a quick mocktail with my cousin in a bar up my street, or...