• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. TakMak

    Severe ME Sufferer faces ban on volunteering

    This is sadly so true. But my point was that you can probably ignore it and do what you feel is the right thing to do and HOPE that they won't find out or penalise you if they do. And given the various cut backs to the teacher's pension services I don't think they will find out unless one tells...
  2. TakMak

    Severe ME Sufferer faces ban on volunteering

    I don't think you should be too worried about it. The TP service is not going find out if you volunteer for the odd hour or two a week unless they follow you 24/7 which they are not. It's one of those legal things that they feel they have to say. I have several friends who took early retirement...
  3. TakMak

    How often do you get twitching eyelids & for how long?

    I've had ME for 18 years but for the first 16 years the only parts of me that would twitch were my eyelids and my big toe. The eyelid twitching would typically last for four or five seconds and would re-occur every few minutes. It tended to last over a period of several days but then would stop...
  4. TakMak

    Do you get a flu vaccine?

    I got it this year for the first time. We're supposedly due a bad bout of flu this season so I decided to risk it. Apart from a slightly sore arm and a very mild fever in the evening on the day of the injection, no other bad signs. That is, there was no apparent worsening of my usual crappy...
  5. TakMak

    NHS Persistent Physical Symptoms website (North and West Cumbria)

    I'm not keen on the distinction between psychological and physical. All of it is physical - the brain is a biological organ and it functions by moving chemicals around. That's surely physical. At its simplest, psychological disorders are problems with brain chemistry and function. The problem is...
  6. TakMak

    NHS Persistent Physical Symptoms website (North and West Cumbria)

    Yep I don't doubt that for a minute. The problem is that for the ones with whom I have had dealings, is that they just can't hide their real thoughts very well. I regard them much in the same way as I regard double glazing or timeshare people. I don't trust them. I think they probably mean well...
  7. TakMak

    NHS Persistent Physical Symptoms website (North and West Cumbria)

    I've been offered a referral to Carlisle's PPSS several times now. I've declined on both occasions being less impressed by the psycho-social model they appeared to follow. However, they have improved their webpages over the last year or two, so it does look perhaps more suitable. I'm not...
  8. TakMak

    MRI shows no signs of MS, but...

    This reminds me of what I am experiencing and have done for the past three years. It started with the faintest of pins and needles in both feet lasting for a few weeks. After it abated I was then left with odd pain, almost cramp like, in my feet. It re-occurred several weeks later, but this time...
  9. TakMak

    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    Had mine yesterday morning by my GP. I had to pay a tenner for it. By the end of the evening I felt mildly fevered on top of my usual symptoms. Today, apart from a slightly sore arm, nothing unusual to report.
  10. TakMak

    Inducing somatic symptoms in functional syndrome patients

    They should also have looked at a third group of people - those with a chronic illness that even the authors accept as non psychosomatic such as MS or RA. I would have thought it obvious that people with any chronic illness are going to be a little more reactive than perfectly healthy people.
  11. TakMak

    What induced your ME?

    A particularly nasty bout of gastroenteritis almost exactly 18 years ago.
  12. TakMak

    Anyone feel a little better at night?

    I think I'm at my best around lunchtime. I'm less tired in the early mornings but have more pain. All symptoms seem to improve up to about midday but then slowly get worse throughout the afternoon. There's often a sudden worsening at around 7pm to 8pm. By 9pm I improve somewhat but by 10-30pm I...
  13. TakMak

    Intermittent fasting and CFS/ME?

    I tried a 5/2 regime for a month after seeing Michael Mosley on a BBC program about fasting a few years back. I felt dreadful for the day after the fasting days. The first week I thought it was just a coincidence but, no, each time I fasted the following day I felt worse. I may try it again at...
  14. TakMak

    Confusion about ME characteristics

    Regarding the amount of times one gets flu, this article appears to shed some light on it: http://www.telegraph.co.uk/news/health/flu/11448031/Adults-only-get-flu-twice-a-decade-say-scientists.html For me I haven't had flu for some time (probably three times in the 18 years I've had ME). I...
  15. TakMak

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Actually I'm tempted to go. If only to see what it's about. I was offered it last year but I politely declined on the grounds it looked too CBT/GET based. I'm pretty sure that's a new website because the old one was not appealing at all.
  16. TakMak

    Diagnosis

    I'm in the UK too and I got given a diagnosis of ME by my GP some 18 years ago. After a serious relapse last year I was then referred to a neurologist who was also able to diagnose ME. Because of my other symptoms I was then sent to a rheumatologist who diagnosed me with fibromyalgia. I got a...
  17. TakMak

    Overwhelmed and discouraged after doctor visit

    Indeed. I'm still not sure what he makes of me. However, I have been trying to 'educate' him in my time with him. I think I may have altered his viewpoint somewhat and this can only be a good thing if he encounters another ME sufferer. That said, I've never been offered some of the tests that...
  18. TakMak

    Overwhelmed and discouraged after doctor visit

    On my first visit to my current GP a couple of years ago he told me 'that the problem with people with ME is so often that they've just given up on life'. I tried to put him right on that but I'm not convinced he thinks it's a real condition. Indeed, he still feels the need to say things like 'I...
  19. TakMak

    Poll: Neurological Symptoms or No Neurological Symptoms

    A long time lurker responds... Pins and needles in my hands and feet - it varies in intensity but is generally worse when other symptoms flare up. My hands often now don't have the fine motor control they once had. Very odd smell disturbances which tends to exaggerate some smells, create whole...