• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. C

    Reflexology?

    That's really interesting, thanks. I think it may be nice to have a relaxing treatment, I'm going to call them up tomorrow and see if they can fit me in sometime.
  2. C

    Reflexology?

    Thank you so much for this. Does the person performing reiki actually touch you? Is it a light touch or is it a non touch and they touch the energy around you? That's some of the things I have heard. I know exactly what you mean, I find keeping appointments and travelling to places really...
  3. C

    Caffeine

    Yes, I think if I don't have a few days where I push myself (even though I know I shouldn't) then I really don't think I could go on. It kills me in pain and fatigue afterwards though. I use the dex glucose tablets too. I had a red about chemicals in tea and coffee after I gave up tea, it's...
  4. C

    Reflexology?

    Thank you for this, it's really helpful. If I am honest I don't really 'believe' in reiki and I think it's like when you are small and you do light a feather, stiff as a board, sort of thing. I think what you say is true about the coach especially. I had from my physio a massage that was...
  5. C

    Reflexology?

    I agree, I don't really want them as a cure, I really don't expect that. But if they ease a bit of pain or give a little energy I could see it as a little treat/pamper instead.
  6. C

    Caffeine

    Forgot to add that I do use caffine tablets if I have to go out somewhere but I have a major crash afterwards, but that could just be fact I have been out and overexerted myself and although I know I shouldn't, well I have to feel human sometimes.
  7. C

    Caffeine

    I don't have any caffine. I used to drink a coffee in the morning and tea through the day. I never liked coffee but it gave me some energy to be able to do something. But I stopped it as I got a racing pulse with it too. I was ill and stopped drinking tea as it made me feel sick. I felt really...
  8. C

    Reflexology?

    I'm just feeling worse and worse and all but given up on medical help, so I'm looking at some alternate things to try to help me. I'm thinking of trying reflexology and possibly reiki. Has anyone here tried either of them and had good results or found it helpful?
  9. C

    Huge improvement in two hours

    Haha, me too, love him and Fed too! Good idea for your cat, I'm thinking of getting a dog and calling him Roger!!!
  10. C

    Huge improvement in two hours

    I'm wondering if I should give this a try now. It can't hurt I would imagine! Hi Grigor, I see you are a fellow fan of Dimitrov, me too!!
  11. C

    Really at a low ebb

    Yes they do sound quite similar. I had been looking into reiki recently and was in two minds about it, however I think I need to give anything a try at the moment. Re travel, I hope to be able to travel, I'm thinking not too far afield, but somewhere I would love to go and somewhere with easy...
  12. C

    Really at a low ebb

    Thank you everyone, I'm a bit better today, in a lot of pain but less tearful and low then I was. I just can't help feeling upset when I think of all the things I would love to do and go and things are just out of reach, however I am starting to think of trying to do things in different ways...
  13. C

    Really at a low ebb

    I will reply to everyone's kind replies tomorrow as I am very tired right now and will go to bed. Just to quickly reply to this one post, I think that progeria sufferers are very bad off themselves and I wouldn't say CFS was necessarily worse. They are not just adult looking in a childs body...
  14. C

    Really at a low ebb

    Thank you all for your very kind responses. I'm a bit overwhelmed. Today I feel a bit better thank you. I've been depressed and low before and desperate, but it was that combined with the worst pain that just made me not want to carry on anymore. I'm really sorry but I have absolutely no idea...
  15. C

    Really at a low ebb

    Thank you for your ideas. I haven't heard about healing touch at all, is it similar to reiki? Thank you, I'm not one for prayer as I'm not a believer personally. I try to do positive things out in the world and help as many people or animals as I can and that's what I try to focus myself on...
  16. C

    Really at a low ebb

    Thank you for your reply and your honesty about what you too have been through. To be honest I was thinking hard about it this morning but I don't think I could see it through and then I looked at other options like in Switzerland, but it made me too upset and the thought made me sick...
  17. C

    Really at a low ebb

    Thank you all for your responses, they mean a lot. Thank you. I think it's hit me that my pain is going to be really very bad now until may next year as the change in weather just makes my pain levels shoot through the roof. The superbetter looks interesting, I think I will give it an in depth...
  18. C

    Andrew Wakefield links autism to CFS

    This is funny as I have often wondered if I had aspergers and even did a test I found on it online (a medical one though, not a 'quiz' one) and it said I was high on the aspergers scale. Looking back at my childhood with my Mother and I had the behaviours then and she couldn't understand why I...
  19. C

    Really at a low ebb

    Thank you for the replies. I have had hot water bottles but it's not doing anything. I can't manage a bath or a shower today in all honesty even though I think I may feel a little better, I'll have to see if I can a bit later. I try to see the beauty, however today they seem to make me cry as...
  20. C

    Really at a low ebb

    Hi all. I have to say I come here not with good news or anything positive really. Sorry. I feel like giving up, I really, really do. I just can't seem to take this kind of life anymore. My pain level is so high at the minute there doesn't seem to be a part of me that isn't killing me. I'm so...
  21. C

    so exhausted it hurts?

    Just speaking for myself, but I would love to hear of some tips if you don't mind. I always feel like I need a massage when everything feels so bad, although I never do have one so would love something that I could do.
  22. C

    so exhausted it hurts?

    That's it, that's just how I feel right this minute!
  23. C

    so exhausted it hurts?

    Yes, completely. It's more in the legs and it is screaming pain, but it's an exhaustion pain.
  24. C

    Can ME/CFS patients in the UK choose who they go to see on the NHS?

    Yes he refused and said he would never, no matter who asked for it. He also said I would have a hard job finding anyone to give me the prescription too. It was not small doses either, they were both large doses. I also suffer from bowel and bladder problems which I did try to tell the Dr but...
  25. C

    Can ME/CFS patients in the UK choose who they go to see on the NHS?

    I'm so sorry to hear you have been let down with care too. It's such an uphill battle and then if you get help it could just be the wrong kind. I hope you get your new GP as you hope. If you need benefits then ask for help, it doesn't have to be about what your Dr says although it can help, I...
  26. C

    Can ME/CFS patients in the UK choose who they go to see on the NHS?

    I was referred to a CFS specialist through a rhummy appointment. I had no say, he contacted them and I went. I have to say I was really disappointed in them. I can't really say on here the full details, but some of what the Dr said didn't even make sense regarding science as to why I was ill or...
  27. C

    seems unfair to lump ME & CFS

    I personally don't know the difference and don't know how you tell. I apparently have one of them, I'm just not sure which or what the differences are until I came on here. I have seen there are ways to see, however the sheer amount of reading on it just makes me feel swamped and I cannot get...
  28. C

    Has anyone been completely cured of CFS?

    To be honest though, your college was in work, which involves getting up, getting washed and dressed and travelling to work and then working. I know mine is so severe I cannot leave the house more then once a fortnight or so, by the time I am washed and dressed I already feel too ill to move...
  29. C

    Experience with Dr.Levine

    Oh I know, I'm just interested in what barbican believes the answer is, if he knows that drugs are not, I would think he has some idea as to what may help.
  30. C

    Experience with Dr.Levine

    What would you say is the answer, if you don't mind me asking?