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

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Search results

  1. jaybird1

    How do I know if my fatigue is psychosomatic or physical?

    I would totally agree with this. Five years after doing GET which made me so much worse, I hired a personal trainer in August last year to help me start moving again, gentle exercise and sort out my diet as I had seen six months of gradual improvement. I struggled to do five push ups at the...
  2. jaybird1

    Inability to co-ordinate

    Hello all I'm fortunate to be able to live a fairly 'normal' life with my ME/CFS; I work for myself so can dictate my hours, am able to rest up, and able to travel, walk, drive, though they all have payback and require rest, plenty of planning and making sure I don't do too much. Every now and...
  3. jaybird1

    At a loss now

    Always happy to chat about stuff on here; it's been a while since I've been on the forum as I took a break from stuff. Always good to get another's blokes perspective too. Too many men don't want to speak out or share their experiences, whether that's ME or mental health or other illnesses.
  4. jaybird1

    Eye problems & Head Pain

    I went to the Optician with blurred vision, but only in one eye. They believed it was the optic nerve getting tired (?) or overworked because of M.E., and it wasn't anything to be concerned about, just rest up, wear sunglasses and don't read too much when feeling exhausted. Certainly continues...
  5. jaybird1

    At a loss now

    Really sorry to hear you go through this Chris. 6 months before coming down with glandular fever that started my ME I had a strange breathing problem that hospitalised me; at the time I had really bad hayfever coupled with a chest infection & head cold, I just couldn't breathe properly...
  6. jaybird1

    Blood test results - help to understand please

    Update: turns out I don't have non-alcoholic fatty liver disease !?!! Apparently the scan only showed some fatty deposits which have since reduced in size since the first scan 3 years ago, and there are no indicators towards scar tissue. I should never have been told I had NAFLD in the first...
  7. jaybird1

    Blood test results - help to understand please

    You’ll have to educate me on what homocysteine is I’m afraid I’ve no idea what that is. I’m already making changes to my diet, not that it was anything too bad but every little positive change is a step in the right direction.
  8. jaybird1

    Blood test results - help to understand please

    Update: been to the doctor this morning following problems with the waterworks. No infection so had some blood tests to see if any problems with kidneys. No kidney problems but liver tests have come back even worse than three years ago. Bilirubin very high and something else beginning with a...
  9. jaybird1

    How Were You DX'd With CFS or ME?

    CFS at an infectious diseases clinic after having glandular fever; Lyme, lupus, cancer, diabetes, liver disease, leukaemia, kidney disease all ruled out.
  10. jaybird1

    Is it possible to get your life back? Has anyone here done it?

    Nearly four years in but doing much better. Became very ill after graded exercise, spent a year needing a walking stick to get around. Changed my diet, pumped myself full of vitamins and nutrients and paced, planned and postponed my life as much as possible. My social life and many friends...
  11. jaybird1

    PEM and pacing

    Yes you can improve baseline; PEM is sadly a given but eventually your stamina improves and you can do a little more. I was in a fortunate position of not having to work so no pressure from that so could pace. Nearly four years from onset I walked 2.5 miles this week (didn’t plan too.....but...
  12. jaybird1

    Blood test results - help to understand please

    That is exactly how I feel - I know I'm not well, I don't feel healthy and there has to be something causing all the symptoms I have, all which fluctuate and some worse than others.
  13. jaybird1

    Blood test results - help to understand please

    Should this be something a GP should have a handle on ie if results of a patient known to them with slight liver issues come back higher than normal that they ask for repeat tests at regular intervals or do I have to chase this up? My GP has been ok but I sensed the last time I saw him (8 months...
  14. jaybird1

    Blood test results - help to understand please

    I don't know - it's just a number written in a long paragraph in a letter sent from the consultant to my GP. As I'm still alive and haven't collapsed yet I assume it's normal :) I've only been tested once for all of these, but I'm really unsure as to whether the GP will refer me back for tests.
  15. jaybird1

    Blood test results - help to understand please

    Thanks for replying; I’m overweight (trying hard to lose more) so I’m a little concerned that 30% is only normal against a certain parameter....do I bring this up with my GP?? Last time I saw GP I asked for B12 injections after the CFS clinic said it’s been known to help but the GP was having...
  16. jaybird1

    Blood test results - help to understand please

    It is yes but probably because of my Gilbert’s Syndrome. I wonder whether a lot of my health issues are due to the liver hence asking what these results are all about.
  17. jaybird1

    Blood test results - help to understand please

    Correct about being male :) thanks for the reassurance, I don’t have the ranges unfortunately so can’t provide any more info.
  18. jaybird1

    Blood test results - help to understand please

    Hi all I had a series of blood tests three years ago when first diagnosed with CFS which I was told by the consultant as unremarkable (charming!). I have Gilbert's Syndrome with small fatty liver deposits. Previous EPV infection. I've dug out the letter sent from the hospital as I think I need...
  19. jaybird1

    Extreme calf Soreness and Pain Emg/Ncs show severe damage elevated ck and alsolase- not cfs?!

    Thanks everyone for sharing your stories - I thought what I was experiencing was unique to me but turns out I'm not alone! I too get the painful calf/leg muscles, twitching, burning and energy sapping feeling and also have Gilbert's Syndrome and Restless Legs Syndrome. I've always had yellow...
  20. jaybird1

    For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

    I remember my local NHS clinic being gobsmacked at how ill I was when I first saw them. It was a 90min trip on public transport to get there so that probably didn't help! But the reason I mention it is that I had already been through 23 weeks of GET through a private provider, who turned out to...
  21. jaybird1

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    I can confirm that is exactly right. I was working for the National Trust when I became ill. Through the pension scheme I was offered treatment for my CFS paid for by Aviva. This was GET with a bit of CBT tagged on. I was promised I'd be back in 12 weeks; 23 weeks of GET later I was told that...
  22. jaybird1

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    The SMC have just released another expert comment, this time on the cytokine article. The expert is Prof Cleare, well known for being linked to health insurance companies, Wessely school and as expert witness in court: http://www.meassociation.org.uk/2012/03/10654/
  23. jaybird1

    Patient surveys and PACE: what patient surveys tell us about efficacy and safety of GET, CBT and pac

    As I have stated elsewhere on this forum, my GET was conducted by Bavinton and her Vitality360 team and she was involved in both Pace and NICE guidelines; I was made worse and lost my job so if she - the author and expert - couldn't make the therapy work who can??
  24. jaybird1

    Working from Home

    You're too kind @David Jackson; everyone can do it, just takes a bit of practice and confidence. I've taught people before who thought they couldn't paint and then shocked them when they produced amazing work. I didn't mean to put you off..... @lauluce no I haven't painted anything about ME...
  25. jaybird1

    Working from Home

    Self Employed...... I use watercolours, acrylics, coloured pencils and more recently just started with oil paints. I've been 'doing' art since being a kid but being ill and losing my job kind of put things into perspective as to what I should be doing with my life. I sell my paintings online...
  26. jaybird1

    Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

    Signed
  27. jaybird1

    Working from Home

    I did this after losing my job with the National Trust a few years ago. I decided to pursue my creative side so became a self-employed artist. I took over the spare room and set myself up with everything I needed which could be left out for a few days at a time, that way I didn't waste energy...
  28. jaybird1

    Crawley: How to deal with anti-science BRS2017

    There's another thread here about a webinar by Jessica Bavinton on the use of GET; I've explained more over there. As it was provided by my work health insurance, and funding was cut as i didn't improve there wasn't anyone to complain to! That was a couple of years ago now sadly.
  29. jaybird1

    Crawley: How to deal with anti-science BRS2017

    Q: I have read that GET is harmful. Is that true? A: No, so long as it is provided by appropriately trained healthcare professionals, as it is in this study. That's just not true; I was made worse by GET from one-to-one care by the person who trains the NHS clinics!!! You can't get anymore...
  30. jaybird1

    Did you have any strange 'episodes' before M.E properly took hold?

    Nearly 10 years ago I woke up with an unbelievably painful stabbing sensation in my head; my wife found me rolling around the floor in agony. Initially thought to be a brain hemorrhage by the GP I was sent to A&E as I was struggling to stand, see or talk properly. Had CT scan and lumber...