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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. Lucy1996

    Question about brain fog?

    And also I totally get what you mean re doctors!!!! I’ve experienced the exact same thing ..”. your throat is fine!!!” “You’re healthier than me (the doctor) “ when it’s lkke umm no I’m clearly not !!!
  2. Lucy1996

    Question about brain fog?

    Thank you so much!!! :) I really appreciate your help ! I’ve had it twice like this ... once July 2015 when I first got sick I got this symptom as my main symptom and eventually it faded and then it hit me again two weeks ago (sore neck back of head feeling really pressurised foggy really...
  3. Lucy1996

    Question about brain fog?

    I’m sorry you have the same symptoms too :( ! I have been diagnosed with chronic sphenoid sinusitus (forgot to mention that above) not sure if it’s somehow all connected .
  4. Lucy1996

    Question about brain fog?

    Thanks for this help :) I am a little stuck re doctors as I live in a very remote location. And the doctors I have won’t test me for anything / give me any medication. They just say sorry it’s post viral fatigue / CFS and give me your money! So at a bit of a loss as to what to do... ! :(
  5. Lucy1996

    Question about brain fog?

    Yes neck is stiff and hurts and yes swollen glands feel them throbbing :(
  6. Lucy1996

    Question about brain fog?

    Yes exactly correct. Sorry I know it sounds so weird. I just wish it would go away :(! Also I have a really awful sore throat when it’s bad like this.
  7. Lucy1996

    Question about brain fog?

    Yes exactly that!!! That’s how I feel
  8. Lucy1996

    Question about brain fog?

    I meant that was where the pressure is mainly focused. Just feels more pressurised in those areas but it’s probably inaccurate.
  9. Lucy1996

    Question about brain fog?

    When I have brain fog at the back of my head (base of my head near my neck) I can’t think, my memory’s awful and I generally have moments of complete disorientation/ confusion/ can’t hold trail of thought. My body feels inflamed. I feel high and stoned and it’s awful. When i was getting better...
  10. Lucy1996

    weird symptoms with mono spongy head / I think I’ve relapsed ?

    When I was first ill following glandular fever / the start of my PVFS/CFS illness I had terrible spongy head at the back of my head and weird symptoms and memory loss like I feel easily disorientated and feel I can’t remember something that’s been said earlier. I feel stoned. I’ve been recently...
  11. Lucy1996

    Very poor immunity

    That’s really interesting to hear. It’s good to know why it might be happening! And for sure I am convinced it has affected my immunity - it must have affected my immune system because I was never like this before!
  12. Lucy1996

    Very poor immunity

    Thanks for your reply! The first 18 months of my illness I got no colds and no infections - that fits your theory... I was too ill to get any colds because my immune system eradicated it straight away. Since then, I get something every month. I get to a point my CFS is “manageable” and...
  13. Lucy1996

    Very poor immunity

    Apart from the flu which was 100% flu rather than CFS, I am wondering if the other infections are just CFS flares but then if they were, would I have green mucus etc?!? It would explain certaintly why I was getting cold/flu in July August and September. I am not taking any herbs though -...
  14. Lucy1996

    Very poor immunity

    I am going to look at finding a neuropath.
  15. Lucy1996

    Very poor immunity

    That’s great to hear! Thanks for your reply. I am presuming I can’t do this in the UK though because I’ve had every test the doctor was prepared to give me here :(
  16. Lucy1996

    Very poor immunity

    my immunity is very poor - infections (cellulitis, influenza, respiratory infections, chronic sinus infections) almost every month , is here anything I can do besides vitamin, healthy diet, cleanliness the obvious. Many thanks in advance
  17. Lucy1996

    THE DIET for ME/CFS?

    Thanks for all your advice xx Today I made a banana smoothie with overnight oats! I think this is the start of something good! I know it’s not sugar free but I felt my energy was somewhat more than normal.
  18. Lucy1996

    THE DIET for ME/CFS?

    Yeah!!! I think it’s definitely something for me to work on these next few months. I find breakfast a difficult one .... cereals too sugary, toast too carby. Do you have any suggestions ? :)
  19. Lucy1996

    THE DIET for ME/CFS?

    I’m sorry this point doesn’t exactly fit to this thread but I figured it’s a decent place to ask! Is there any benefits in cutting out sugar??? To reduce chronic infections (sinus) and given my EBV and shingles cause of my CFS & I’ve heard anecdotal stories. It would be so difficult to give...
  20. Lucy1996

    Sinusitus and CFS/Me

    Definitely going to buy! Thank you :-)!!
  21. Lucy1996

    Sinusitus and CFS/Me

    Thank you for your reply :-) It’s really good to hear other people have the same issue and it makes sense. Although sad you have the suffering of sinus problems too! That’s really interesting re the machine... I will look into it. I’m going to buy some Epsom salts definitely. :-)
  22. Lucy1996

    Sinusitus and CFS/Me

    Thank you... I think I’m going to be brave haha and give it a try! :)
  23. Lucy1996

    Sinusitus and CFS/Me

    Thank you that really makes sense to me!! :-) I was offered surgery but he said it wouldn’t necessarily help and I thought it wasn’t worth the cost/stress without any obvious benefit. The only thing I’ve been doing lately for it is inhaling menthol crystals. I’m not sure where to start with...
  24. Lucy1996

    Sinusitus and CFS/Me

    What is hypoperfusion? Sorry to be a little dim :) I’m sure my sinuses affect my concentration and my eyes as everything is blurry when they’re blocked .. but when they’re dripping I can concentrate a bit better. It’s definitley not as severe as CFS fog though for me x
  25. Lucy1996

    Sinusitus and CFS/Me

    I have chronic sinusitus (sphenoid) as well as my CFS which causes brain fog (albeit differently to CFS). This might sound a stupid/gross question but ... why does my sinus type brain fog disappear when my sinuses are dripping down my throat ? When they stop dripping (like when I take anything...
  26. Lucy1996

    What food testing is the best?

    It was a blood test yes. Thanks Ryan!. That’s really helpful I appreciate your response. I think I’ll do some more research re FODMAP and go from there :)
  27. Lucy1996

    What food testing is the best?

    I’ve never really addressed the possibility of having food intolerances adding to my CFS/ME. I know I’m not a celiac as I’ve had the test done. However, I am wondering if I have a gluten sensitivity. As I have being getting pains after some food containing high amounts of gluten. I don’t want...
  28. Lucy1996

    Anxiety flaring up again since having the flu

    Hi guys My CFS has been pretty stable up until Xmas and I could predict my symptoms and how much rest I need. Since having the flu for ten days over Xmas I’ve felt my anxiety levels creeping up about the fear of total relapse and fear of extreme brain fog like when I was first ill. My chronic...
  29. Lucy1996

    Studying with CFS

    Postscript... I did actually well in my exams (No idea how!!!!!) CFS has not killed off all of my intelligence... just a little!! Now just have to keep it up and not crash before the end of my degree. Resting , resting and resting some more! Thanks for all your support xxx
  30. Lucy1996

    Best vitamins in the UK?

    Sorry if this is a stupid question but I wondered what’s the best vitamins to take as a 21 year old with some CFS symptoms (CFS caused by shingles and glandular fever) remaining and an extremely poor immune system with frequent infections (chronic sinusitis, cellulitis , flu viruses etc....)? I...