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

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Search results

  1. jules78

    Does anyone else get this?

    Hiya @RustyJ :) The only time I've had the waking up feeling is when I've literally just woken up and had one. But recently the Times I've been experiencing them I'm already awake. They just sort of come on when I'm doing something. They are really strange. It's like I'm here but I'm not here
  2. jules78

    Not liking myself

    I typed in Brenda at first! :confused: Clearly my sleeping all day today has not helped my brain to function any better lol :bang-head:
  3. jules78

    Not liking myself

    Thank you so much @peggy-sue . I will make a note of those. Tomorrow I'm starting a no gluten and dairy diet. And have got a big bowl of fruit on my bedside table, for me to snack on if I get hungry. I brought some As I guess a lot of it is going to be process of eliminations. Until I find out...
  4. jules78

    Does anyone else get this?

    I've not had a bite like this before .
  5. jules78

    Does anyone else get this?

  6. jules78

    Does anyone else get this?

    Thank you @Ren And @justy . Ren how you described it is certainly how it felt. I've never experienced anything like it before, when fully awake anyway. Since becoming ill I have had it upon waking up. But only recently have I started to have it where I am already awake. It's such a strange...
  7. jules78

    Involuntary movements question....

    @AndyPandy. Sertraline is the only thing i've taken. I've never tried any herbal supplements or anything like that.
  8. jules78

    Involuntary movements question....

    Hiya @AndyPandy thank you I will look that up. However I've been taking the sertraline now since March 2013 without any problems before. :)
  9. jules78

    Does anyone else get this?

    I found something that describes how I feel called spatial disorientation. I'm not sure if this is it or not. But it says people with CFS can have this as a symptom.
  10. jules78

    Does anyone else get this?

    Hiya @ggingues I'm not taking any sleep medication no :)
  11. jules78

    Not liking myself

    I'm just not used to having help. Have been raising my three children on my own for the past 13 years now. So that's just yet another thing to get used to, not being completely independent :)
  12. jules78

    Not liking myself

    Thanks @brenda I do think that's probably why I'm craving the sugar stuff so much. Because my body's being starved during the day. Not every day, but more often than not. My dad did say I should contact social.services to see if they can offer any help. My housing officer is coming to see me...
  13. jules78

    Not liking myself

    Thanks @Esther12 for all your advice. It's much appreciate. I will definitely get a fruit bowl beside my bed now. And look for alternative healthy snacks. I do like rice cakes :) And I'm sure my daughter could prepare a salad the night before for my lunch. I've just got to stop using food as a...
  14. jules78

    Not liking myself

    Thanks @Martial I will take a look. My pulse reading just now at rest in bed was 60bpm, I stood up and stood very still on the spot and for about the first minute or just under there was no change. Then all of a sudden it started climbing quickly...... I let it get to 82, as needed to sit...
  15. jules78

    Not liking myself

    @Martial I have just read up on mold mycotoxins. As had never heard of this before. It was an interesting read. I have been exposed to mould in the past, though not vastly. But I had issues for a long time with a rental washing machine, which had a lot of mould in the seal and drawer. I...
  16. jules78

    Not liking myself

    Hi @Kati , thank you so much for that :) I will definitely take a look at that. And look out for you on it. And congratulations on your weight loss. 45lbs is an incredible loss :)
  17. jules78

    Not liking myself

    Hi @Martial Thanks a lot for all your advice. To be honest my doctors not bothered to test me for anything. After six months of my going back and forth to him and having two sets of blood tests come back normal. He's just referred me to the CFS Clinic. I was only saying to my dad last night...
  18. jules78

    Does anyone else get this?

    Hi all I've just had another 'episode' where I suddenly feel like I've woken up, but I'm not asleep! I'm disoriented and not sure where I am, then a couple of seconds after I get my bearings again. I was just sat on my bed looking online. I was definitely awake as I was reading something at...
  19. jules78

    Not liking myself

    I've been bed bound now for a few months now. Before I got this I was very active, and was doing boxing classes and circuit training and dancing a lot. I was trying to get fit and also lose some of the weight I had regained over the previous year. Now because I'm inactive I have gained weight...
  20. jules78

    breathing problems solution?

    @golden thank you, I will look up that technique :)
  21. jules78

    breathing problems solution?

    Thanks @heapsreal I hadn't given a though o my blood pressure, so I'll keep an eye on that! :)
  22. jules78

    breathing problems solution?

    Thanks @Kina I was already aware of that and wouldn't do that anyway. I'm a mum who is responsible for my three beautiful babies. I would not do anything to put myself or them at risk x
  23. jules78

    clueless......

    Oh yes it definitely helped @peggy-sue . So much so that I decided it was time for a brand new start, away from all the memories of where I had been living. So I moved myself and my three children to a town where I'd never lived before. And thankfully it paid off. The kids love it here and are...
  24. jules78

    breathing problems solution?

    Thanks @WillowJ do you think I will have anymore joy at the CFS clinic, as surely they must take you more serious there? Or again is it down to finding the right person
  25. jules78

    clueless......

    My children have seen me depressed and they definitely would have known if I was too.
  26. jules78

    clueless......

    Yes that's most definitely the impression I get @peggy-sue I wanted to bang my head against a wall, because it felt like he was so adamant to pin it on depression, because I've had that in the past. Any symptom I had, he said yes that does occur with depression. Aarrgghhh :mad: I kept...
  27. jules78

    breathing problems solution?

    No I haven't tried those @Valentijn . But thank you, will ask about those in the health food shop here. I'm so pleased I found this site as everyone's so helpful. The doctors been pretty useless at offering advice or explaining things. And it's baffling at times. I'm still some days still...
  28. jules78

    breathing problems solution?

    Thank you @minkeygirl :D If you wouldn't mind sending me the link, that would be fab thanks x
  29. jules78

    clueless......

    Mine do look like sausages @peggy-sue I get a lot of jerks, which have definitely become more stronger and frequent. My kids find it hilarious, when I'm sat there and suddenly throw my arm up or shake my head lol. I get them all over, but it's mainly the top half of my body. I've bitten my...
  30. jules78

    clueless......

    Oh thank you @peggy-sue and your doing fine lol it's me being slow :D In that case I will stick to my original ME, because it's not just "fatigue" it's so much more than that, and the word fatigue, just somehow sounds like a bit of an understatement to me lol. The amount of simple things like...