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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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  1. MargUK

    Completely eliminated my severe anxiety symptoms with three supplements!

    @asymmetry - I noticed you started with a low dose of NAG initially. I'd like to do the same after trying it twice and apparently getting a pretty bad reaction but can't figure out how to do it! Did you just open the capsule and measure out the contents until you got the dose you wanted? And...
  2. MargUK

    'My life got taken away from me' - what it's really like to suffer from Chronic Fatigue Syndrome

    Yes I felt the same - she had such a promising career ahead of her. She's the same age as my daughter and I just couldn't imagine what it must be like to have so much of your life taken away from you at that age. I thought the idea of Little Hannah was brilliant but it must make her so sad at...
  3. MargUK

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Thanks @Skippa - I found the Bluelight and several other drug forums very helpful when I was trying to decide whether to go on Subutex or not originally. How I wish I'd never touched the stuff! I instinctively knew it was far too strong a drug for my situation - someone said to me it was 'like...
  4. MargUK

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    (Apologies for long post but felt you needed all the info). I'm very interested in this thread and wonder if anyone can help me with extremely distressing symptoms I'm experiencing on a daily basis. I'm now starting to wonder if they're withdrawal symptoms. I was put on 0.8 mgs of Subutex 2...
  5. MargUK

    'My life got taken away from me' - what it's really like to suffer from Chronic Fatigue Syndrome

    I followed the link to her blog from the article - it's good - read all her entries in one sitting!
  6. MargUK

    ANXIETY, PANIC ATTACKS

    Just to warn you @Mivvi5 that thread of hip's is excellent but very long. Took me several days to get through it all! I am also struggling with major anxiety at the moment and find it extremely debilitating - it has made me housebound and bedbound for much of the day. For those of you who...
  7. MargUK

    Does anyone else worry about money/finances?

    I'm reading these posts and thinking "Did I write a post yesterday and forget?" because there was such so much I could relate to and could have written myself! I am also in the UK, currently getting ESA but finding it more and more stressful and downright impossible to keep fighting the DWP...
  8. MargUK

    Could I Have Overdosed on B12?

    Thanks so much @Mary - I had a look at that website and found a practitioner about 20 minutes drive away who seems to specialise in health kinesiology so I'll try contacting her and see what she suggests. There was someone in my home town but he didn't seem to be qualified in anything so that...
  9. MargUK

    Could I Have Overdosed on B12?

    Sorry @Mary my iPad froze there for some unknown reason. God if it gives up on me I will definitely go insane! Can you imagine having this illness and not being able to reach out to folk through the Internet or do any research online? Doesn't bear thinking about! I meant to say I'm terrified...
  10. MargUK

    Could I Have Overdosed on B12?

    That's really interesting @Mary - I would never have thought to use a Chiropractor for those sorts of issues at all. So would a good one know what to do if you said you wanted muscle testing? What is that exactly? Is it just what it says on the tin or is there more to it? I would imagine that...
  11. MargUK

    Could I Have Overdosed on B12?

    Thanks @Mary. To be honest I have no idea what caused what - as so many of us do with this illness I was pretty much stumbling about in the dark! It could well have been a bug which my body just couldn't get rid of - I think what made me wonder about the B stuff was just the fact that it was...
  12. MargUK

    Could I Have Overdosed on B12?

    Thank you @Mary and @arewenearlythereyet - that was good advice but I think I've been so shaken by the last 3 weeks that I just wouldn't be able to go anywhere near any more B complex for a while. I agree with your rule of thumb @Mary about introducing one thing at a time but I'm still confused...
  13. MargUK

    Could I Have Overdosed on B12?

    I apologise for the late reply - I really haven't been well at all but feel better today. I was very confused by this measurement business @Mary and @arewenearlythereyet but now that I've had a proper look at the dropper I can see the 1 ml measurement and see what you mean. Yes it was only a...
  14. MargUK

    BF233 Form

    Has anyone had one of these before? After stressing bigtime about my upcoming DWP Assessment which was supposed to be today at 1 p.m. I finally phoned to cancel. I had already rearranged the date (because they always ask what times/dates you are no available and then promptly ignore what...
  15. MargUK

    Could I Have Overdosed on B12?

    Thanks @PinkPanda - I'll maybe reintroduce the oil at some point then. I agree I think it's far better if poss to take things singly then you have a better idea of what's causing what!
  16. MargUK

    Could I Have Overdosed on B12?

    Thanks for all your replies - I'm a bit confused by the 'low dose' bit though? Bluebonnet B12 oil has 5000 mcg in each drop and that seemed to be what some of you were advocating? Or did you think I had stopped the oil when I started the B complex tablet? I'm certainly starting to feel better...
  17. MargUK

    Could I Have Overdosed on B12?

    After reading through a thread on B12, I decided to try the Bluebonnet B12 oil (5000 mcg). I put a drop under my tongue just before my teatime meal every evening and certainly didn't feel any worse after several days of using it. Further reading made me realise it was probably pointless taking...
  18. MargUK

    Norwegian Documentary "Sykt Mørkt" - 2 Very Severe ME Patients - 1 Recovers w/ SCIG

    Would love to watch this but although I can get the page itself to translate to English, when I play the video the subtitles are in Norwegian and I don't seem to have an option to change this? Anyone help?
  19. MargUK

    Navigating The Site for Relevant Info

    Thanks @GG!
  20. MargUK

    Navigating The Site for Relevant Info

    I'm so glad I started this thread because I could have wasted a lot of valuable time reading up on this @Basilico. And I totally agree that 'avoiding stress' is useless advice! You might as well say 'avoid life'!
  21. MargUK

    Navigating The Site for Relevant Info

    That thread @Hip was the one I mentioned earlier that took me almost a week to get through! Although it was super helpful that's what made me despair because I thought if it's going to take that long just to read ONE thread on anxiety I'll never get through anything! But the roadmap is a...
  22. MargUK

    Navigating The Site for Relevant Info

    Thanks @Snowdrop - that was working fine if I knew what I was looking for but there appeared to be a myriad of different topics which I felt I wasn't tapping into just from what was being said in posts. I was also struggling to understand a lot of posts because what was being discussed was so...
  23. MargUK

    Navigating The Site for Relevant Info

    Oh no really? Super glad I didn't spend too much time on research on it then @adreno! Your suggestion was exactly what I was doing previously but I was getting bogged down seeing all sorts of different things and not really getting anywhere positive. However now that I have the roadmap I...
  24. MargUK

    Navigating The Site for Relevant Info

    THAT is exactly what I needed @PinkPanda - thank you so much! Perfect :smug:
  25. MargUK

    Navigating The Site for Relevant Info

    Thanks @Basilico that's really helpful! I'll have a proper look at those links some day. I seem to get PEM from all sorts of stuff - there's no rhyme or reason to it at all. I can do an activity like babysitting for instance which will floor me one day but will be fine on another occasion and...
  26. MargUK

    Navigating The Site for Relevant Info

    Thanks! I'm quite surprised by your criteria though - I wake up in an absolute nightmare every single morning - I NEVER feel refreshed from sleep - but that can turn into a good/bad/mediocre day - it doesn't seem to be a sign as to how the day will go? I thought most people experienced this...
  27. MargUK

    Navigating The Site for Relevant Info

    Hi @trishrhymes and thanks for this - that's a good idea to join the ME Association - I have browsed their website on occasion and found it helpful. And thanks for that link - @AdamS and already pointed me in that direction which I'd somehow missed in just browsing so I'll definitely have a...
  28. MargUK

    Navigating The Site for Relevant Info

    That's kind of what I was doing but it just worried me after it took literally a whole week just to get through ONE thread on anxiety - I just wondered if there was an easier way of navigating.
  29. MargUK

    Navigating The Site for Relevant Info

    Sorry @AdamS I just realised I didn't answer your questions! I do crash after exertion and suffer from PEM but am having a hard time knowing where my baseline is at the moment. My relapse I think came from trying to a part-time (one day a week) postgrad course at University which I started in...
  30. MargUK

    Navigating The Site for Relevant Info

    Thank you @Learner1 that was really helpful. That's what I needed - some sort of signposted guide as to where to start and roughly what order to read stuff in. I've just been reading posts which have affected me and my own situation so far but in passing have realised there's a wealth of other...