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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. Shell

    Could treating mono/glandular fever stop ME ever happening?

    Having seen the gut wrenching appeal from candie about her son I have wondered about mono/glandular fever and the whole nine yards of EBV and it's effects. According to an NHS site glandular fever lasts about 3 weeks and doesn't require treatment. So I had it twice 6 weeks each time. So...
  2. Shell

    losing my minds ability to think

    candie I wonder if Dr E. would have some ideas and he could prescribe. Your biggest problem at this point, it seems, is you couldn't access antivirals or anything much as your GP is behaving so appallingly! If there's an ME support group near you, there might be recommended local GPs as well...
  3. Shell

    ME/CFS Research Newcastle UK - Team Newton

    Ah yes the BBC - the propaganda wing of anything "elite". Can anyone take anything they spew seriously?
  4. Shell

    trying to make some sense of it all - would be grateful for corrections

    As I am sofa'd at the moment, I am trying to make sense of a few things. I have been collecting dx and potential dx - HyperPOTS and IST fibro ME asthma vocal cord dysfunction. migraine labile hypertension ( making the hyperPOTS combo) So. I think I get the whole autonomic nervous system...
  5. Shell

    losing my minds ability to think

    Candie - can't add more for you and Billy than what's been said here. I certainly recommend Hummingbirds though. I'm glad you've joined us here. I hope you can feel supported.
  6. Shell

    Fibromyalgia solved; a pathology not in the mind (research)

    Interesting stuff, - would like to have seen a link to the paper though. The "bust thermostat" is very much a part of Fibro but it's also a part of ME and Dysauto stuff. It seems to be saying there's yet more evidence of a HPA dysfunction pointing back to Woods et al's findings suggesting...
  7. Shell

    FDA CFS and ME Teleconference - October 16, 2013

    Listened to it. There was some good comments and questions. I am glad that it was (yet again) reiterated just how sick we are and how, unlike the other "communities" we are often too sick to fight and thanks to the stupid "CFS" label can't get family and friends to fight for us. After 30+ years...
  8. Shell

    Can't stand upright without coughing and retching

    Thanks both. I think bronch spasm could be it. Managed to stand up this morning - just have to be very careful and slow. I so love this illness- always trying something new on me.:eek:
  9. Shell

    Can't stand upright without coughing and retching

    I've started something that won't stop. Last night I crawled upstairs too quickly- because I'm a right eejit and didn't want to be seen by my 10 year old son! - got to the top of the stairs and stood up. Couldn't catch my breath, heart doing a dicky-fit and I ended up coughing and retching for...
  10. Shell

    Vocal Cord Dysfunction and ANS response.

    I saw a specialist in VCD yesterday as my Respir Cons thought the constant voice loss and some other stuff was probably VCD and not just the asthma or other breathing stuff (orthostatic) The woman I saw was very good. She took a full history, was fine about my reading research and then I had...
  11. Shell

    Specific questions re heart rate monitoring

    Can't think of a website just off hand but here's some basics: A healthy person's resting HR is between 65 to 80ish. Athletes can have resting HR of 50 but that would be bradycardic in a "normal" person. Resting HR of 90 + is a bit high. 100+ is tachycardic. Running could get a healthy person's...
  12. Shell

    ME/CFS Research Newcastle UK - Team Newton

    I hope not. We could do with having Julia Newton on side. She's done a lot for POTsies with NMH but I've had a sense she's so focused there that Dysauto of a different flavour passes her by. If she is looking at the autonomic aspects of ME that would be very good - IF she is allowed to do it...
  13. Shell

    A "going to bed" question.

    There's a doc somewhere in America whose name I can't remember who did some limited research on POTsies based on his hypothesis that as astronauts can get a form of POTS from the deconditioning of zero gravity. (Put aside for a moment the sheer lunacy of assuming that one very unusual...
  14. Shell

    A "going to bed" question.

    Well done Keela Too - that shows a lot of self discipline. I've realised I need more of that; although right now my body is dictating my actions a bit more - the "oh i can manage that" is becoming "Nooooo, I just can't". I can't even answer the bloody door to the postman! A fellow home ed...
  15. Shell

    A "going to bed" question.

    Ah yes that deep refreshing sleep business. Wish we could have a bit of that! Oh for some of those sweet delta waves! I am sure if we could get better sleep both the OI and PEM would improve - but even drugs don't help that. The more I do the more i crash. Simple as that.
  16. Shell

    A "going to bed" question.

    That does sum it up nicely. ;)
  17. Shell

    A "going to bed" question.

    Thank you both. I am semi-lying on the sofa - upright enough to breathe and down enough to stop the chest pain. What a daft life we live! I am missing meals too Tania. Partly because it's too much hard work to eat and I can't swallow properly (again). My kids are rising to the occasion. They are...
  18. Shell

    A "going to bed" question.

    Well I've been sofa'd. I had what looks like another TIA on Thursday night. I can't walk much at all now and being upright even for a short time leaves me breathless and with terrible chest pain. Wedged on sofa and hoping the fact that I've hardly done anything will sort it out a bit. Went to...
  19. Shell

    Desperate for help:

    I wonder if you got the pain under control if that would help other things. Pain management is always trial and error as we tend to be sensitive to so many drugs but low doses of drugs like Amitriptyline or nortryptyline help a lot of us. Others do well on Gaberpentin. I've found since getting...
  20. Shell

    Anyone else have severe tremors?

    I have severe tremor too. I have assumed it's about lack of dopamine or a busted uptake and reuptake as I have hyperPOTs and IST. They are much worse when I'm upright or when I'm trying to do something fine motor - buggered my writing and ability to draw; I do both like some old biddy now - but...
  21. Shell

    What is brain fog? An evaluation of the symptom in POTS

    I see the old "hyervigilant over reporting" canard was wheeled out. So they ask POTsies what happens with brain fog and then complain when they report on it.:rolleyes:
  22. Shell

    Heart stops, then thumps

    It seems a lot of us have heart problems. I've already had a couple of mini-strokes, and although one cardio said my heart was fine I am now getting treatment for IST and admission that I have hyperPOTS. lastgasp I agree with what you say, except that the studies I have read say heart failure...
  23. Shell

    Reaction to anesthesia

    Hummingbird has this. I doubt if there's much out there on ME and anesthesia as there's so little research on ME/Cfs overall. There does seem to be a lot of info about the bad effects of particularly general anesthetic on people with dysautonomia. As it seems (despite Ramsay) that various...
  24. Shell

    A "going to bed" question.

    Thanks Peggy-Sue that' exactly why I started this thread. I really really hope others will do the "go to bed" thing if, what Nancy Klimas and others have said is right. I have met at least four people with dx of ME or CFS who either went to bed - or go to bed regularly who are either in...
  25. Shell

    A "going to bed" question.

    That's what happened to me. I was losing muscle in my dead leg so the docs pushed me to walk as much as possible. I would crash out from walking around the block and feel guilty - that I wasn't trying hard enough - when I just couldn't do the walk every day. I went from walking (with crutches)...
  26. Shell

    A "going to bed" question.

    Thanks folks. I s'pose I am asking because I am finding it harder and harder to function. I wedge myself upright sometimes in the corner of the sofa, I've got a more supportive wheelchair - but am increasingly too ill to use it. In some ways I think the wedged approach is better than bed where I...
  27. Shell

    A "going to bed" question.

    It just so happens that I've met a couple of people who have either gone into what looks like complete remission from ME or are doing a hell of a lot better than me with ME. (If I have ME, which, of course I still don't really know) Anyway, talk to them for a few minutes and what I get is the...
  28. Shell

    Men vs Women

    Ema Internesting as that's when I became ill - I was pregnant with my 10 year old.