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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. Bookworm84

    Pregnancy, birth and ME/CFS- my experience

    Thanks everyone! I’m loving every moment, it’s even got me back into writing a journal. I’d given up over the years (weeks of illness and watching tv aren’t fun to look back on!) but re-started during the pregnancy and I’m continuing now. @RebeccaRe congratulations on your marriage. I know...
  2. Bookworm84

    Pregnancy, birth and ME/CFS- my experience

    Hi, I just wanted to note my experience of going through a pregnancy and birth with ME. When I got pregnant I found very few testimonials from people who’d been through it and wanted to offer up some information for anyone else going through this. I’ll start by saying that my ME pre-pregnancy...
  3. Bookworm84

    Calls for Ibuprofen sales restriction

    An article has just been published calling for the restriction of sales of Ibuprofen. A Danish study suggests that it can increase the risk of cardiac arrest by 31%. Prof Gunnar Gislason of the University of Copenhagen, who led the study, called for tighter controls on the sale of ibuprofen and...
  4. Bookworm84

    Comment by 'Bookworm84' in 'Sense and Sensibility...and Shortbread.'

    Firstly, I'm glad I'm not the only one who differentiates between daytime and nighttime PJs ;) Secondly, I'm sorry you're having a rough time of it. I completely get what you're saying. You live by the strict rules you've developed over years of trial and error. You follow them to a T but...
  5. Bookworm84

    Comment by 'Bookworm84' in 'The Bright Side'

    I love this! It's great to concentrate on the positive for a while. I agree with the maturity one. I think it's made me pretty level headed and practical about things. How lovely that it's brought you closer to your grandmothers. I lost the last of my grandparents last year (they were all...
  6. Bookworm84

    Comment by 'Bookworm84' in 'Not the last day'

    I'm glad that you had your cats and V to help you get through your hospital stay. I completely get the impact and sense of comfort a pet can bring. They are family. The most moving parts for me were the periods of time you couldn't remember and your reaction to discovering snippets about what...
  7. Bookworm84

    Comment by 'Bookworm84' in 'Health notes including suicide attempt 1995-6'

    You kept a very detailed track of your symptoms and experiences. I can imagine this helped you with your GP when getting your diagnosis. If nothing else it organises thoughts and you can see patterns develop. Thank you for sharing.
  8. Bookworm84

    Unicorn spotting

    I read a really interesting post about success stories and what people had done/eaten/taken to get better. Success stories in our world feel a bit like spotting a unicorn or the Loch Ness monster. Exciting, awe inspiring but impossible. I've seen a few articles over the years (and had them...
  9. Bookworm84

    Comment by 'Bookworm84' in 'My Relationship With Trousers- It’s Complicated.'

    I have to say I read this and felt true kinship! I sympathise with your plight in trying to find trousers that are comfy, keep everything in and look somewhat trouser-like. I will freely admit to being a skinny minny (as my mum likes to call me), but due to anxiety issues I find trousers near...
  10. Bookworm84

    Comment by 'Bookworm84' in 'Then… And Now – What having ME has taught me.'

    Love this, so positive! And I've come to the same conclusion about my PJs, I spend more time in them and my hubby's tops over leggings than I do my 'outside' clothes. Is it weird that we have separate inside and outside clothes? Only just realised that might be odd! Inspirational words warrior...
  11. Bookworm84

    Comment by 'Bookworm84' in 'Talk is cheap'

    Thanks @Kinesis I'm glad that your friends are supportive and that they encourage you to take is slow. I've given advice to someone on here before that if they are true friends they will support you, if not they don't matter. I should take my own advice! I definitely understand not wanting to...
  12. Bookworm84

    Comment by 'Bookworm84' in 'Trip to the charite in Berlin, part 12'

    That's really interesting. It's quite exciting that you have lots of information and things to try. Co-enzyme Q10 and B12 seem to come up a lot in symptom treatment for CFS, it'd be good to hear about your experience if you give them a try. I was on Lyrica last year for nerve pain and I found...
  13. Bookworm84

    Talk is cheap

    I saw an episode of Sherlock the other day, the new ones with Benedict Cumberbach. The villain said that he wanted to talk to his daughter and co-workers but had set it up so that they received a drug and in an hour they would forget the entire situation. He could confess and feel the relief...
  14. Bookworm84

    Offer on folding wheelchair

    Hi all, not sure if this would be of any use but Lloyds Pharmacy's EBay store have wheelchairs for £58.49...
  15. Bookworm84

    Falling down...symptom or clumsiness?

    @Valentijn Thank you so much, that's really helpful. I'll have a read up on it and check in with the Dr. One of the hardest things is trying to seperate symptoms from more general issues or personal quirks.
  16. Bookworm84

    Falling down...symptom or clumsiness?

    I'm wondering if anyone else gets this as a symptom of CFS? In the last year I've fallen down the stairs twice whilst ill with other symptoms. The first time was when I had arm pain due to Thoracic Outlet Syndrome. I don't know what happened but suddenly I was slipping down the stairs but was...
  17. Bookworm84

    Comment by 'Bookworm84' in 'CFS Wedding Advice'

    I got married in 2009, about a year or so after CFS was first mentioned to me and I was still in the waiting period before diagnosis. I was terrified that I would be ill on the day. As your wedding is next month and everything is booked I bet you're feeling even more 'trapped' for want of a...
  18. Bookworm84

    Let me introduce myself

    I love this site because there's always a supportive ear or someone who has had a similar experience. Good to know about the eye drops, have to give that a try! Merry Christmas all :hug:
  19. Bookworm84

    Comment by 'Bookworm84' in 'Unwanted Christmas presents'

    Funnily enough I had 'Pop up Practitioner' that I was going to put on eBay. Turned out it was faulty, couldn't get the practitioner to do anything.
  20. Bookworm84

    Let me introduce myself

    Hi @Braveheart , I couldn't read your post without replying. It sounds like you've been diagnosed pretty recently and are still dealing with the initial shock/coming to terms with your illness. I can completely empathise with your trips to the GP. As I was in my teens - 20s when I was...
  21. Bookworm84

    Strep throat...anyone else?

    Thanks both. :) @Cohen2 That sounds awful! We do have Lemsip so I might swap a dose of paracetamol for that. I've been alternating paracetamol and ibuprofen which is making things manageable. Although I'm having to keep a record of what I've taken and when as I lost track! I've been using an...
  22. Bookworm84

    Strep throat...anyone else?

    I had strep throat last year. After a few days of terrible sore throat I bit the bullet and went to the GP where they diagnosed strep. Antibiotics worked reasonably quickly and I was fine. A few days ago the throat pain started again and yesterday I went straight to the GP before the symptoms...
  23. Bookworm84

    Let me introduce myself

    Hi all, I'm 32, married and from Wales. I have a very supportive husband and a very mischievous sausage dog. In addition to CFS I have arthritis in my one foot and last year developed Thoracic Outlet Syndrome. I caught glandular fever and pneumonia at 7 years old and developed symptoms after...
  24. Bookworm84

    Comment by 'Bookworm84' in 'Now you have been diagnosed with ME, what now? Part Two'

    Well said. I always feel especially happy when an acquaintance decides to give me 'advice'. A colleague brought me in an article from one of those gossip magazine that cost 50p and have sensational headlines. It was about someone with ME who was bedridden and had started a fundraising campaign...
  25. Bookworm84

    Comment by 'Bookworm84' in 'Now you have been diagnosed with ME, what now? Part One.'

    So true! Not sure about the rest of the UK but the NHS in Wales has been trying to get doctors to empower patients to be part of their own recovery plan (in all instances, not just CFS). For the last year my Dr has asked the same question after I've described my issue - What would you like to...
  26. Bookworm84

    Fun cometh before a fall... or something like that

    Well this week has not gone as planned! I expect most of you can relate to that. Sometimes I wonder what plain of reality my brain works on! I get these grand ideas in my head and scheme away for hours. Then reality bites me hard, right on the bottom, and I look back on my ideas and wonder what...
  27. Bookworm84

    Do all people with CFS commonly experience flu like symptoms

    The frequency cold/flu symptoms ended up being the thing that drove me to the doctor to get a diagnosis. I'd had CFS symptoms unknowingly for years but when I started a job in a call centre at 21 my body went haywire. I know now that it was a mix of stress, constantly changing shift and eating...
  28. Bookworm84

    Comment by 'Bookworm84' in 'I cannot buy a guinea pig'

    Some days there is nothing worse than watching the world go by through the bars of your cage. Or letting yourself imagine everything you're missing. Hope you feel some freedom soon.
  29. Bookworm84

    MRI...oh my! Part 2

    Ummm....... I nodded, slapped a smile on my face and stood up with much more enthusiasm than I felt (story of my life!). I was told to remove my trainers outside the room and lie down on the bed. There were small plastic L shaped pieces to indicate where your head and shoulders should sit. I...
  30. Bookworm84

    MRI.. Oh my! Part 1

    Hi everyone, I just wanted to write something about an MRI scan I had today. Simply because there wasn't a great deal of info online about the little details and I'm a stickler for the details! A bit of background info - but feel free to skip ahead in the story. As well as having CFS, I was...