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

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  1. CantThink

    Suffolk

    That should read Long Melford not Medford!
  2. CantThink

    Suffolk

    I'm in Essex and visit Suffolk for the dentist (Long Medford/Lavenham). Whereabouts in Suffolk are you?
  3. CantThink

    How old were you when you got sick

    Thought to be glandular fever (EBV?). It was sudden onset.
  4. CantThink

    Inability to co-ordinate

    I get that but without the legs buckling. Mine seems more like an absence seizure or a simple partial seizure. Like I'm stuck on brain pause button!
  5. CantThink

    How old were you when you got sick

    10 in 1991. My parents do not suffer from it.
  6. CantThink

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I'm interested too. I'm in Essex. I read this: At present in the UK there is only one upright scanner facility suitable for diagnosing CCI which is based in London. Please click the link which will take you directly to the facilities website. Click the link for upright MRI facility website...
  7. CantThink

    Gastroparesis - Problem w/Fluid Emptying Only - Need help with rare symptom / diagnosis

    I have this problem. Lost 26kg through it but gained some back while pregnant as being pregnant and breast feeding has helped the gastroparesis (homones?!). In my case, the doctors kept saying all was okay but that the symptoms were spot on for gastroparesis- they could not understand that it...
  8. CantThink

    Bradycardia (slow heartrate) with ME?

    I get both brady down to 47 and tachy up to in the 160s. When mine goes low, it is as if my pacemaker is struggling to work and then suddenly kicks in. I can feel it's going sloooooow, pause, then suddenly boom bomb boom and it will start climbing to the normal 60-100 range.
  9. CantThink

    New to forum,, would like advice

    Has your heart been checked out? They should probably check it given the issue with exercise and your HBP. A cardiologist would be the person to see for that. This is quite interesting given the neck up only symptoms combined with appearance after exercise...
  10. CantThink

    Fear for a worsening disease?

    Do you have a copy of your actual thyroid results? Where are the results in the ranges - top bottom middle? What's your TSH? I have the hanging skin issue in isolation too. Mine is very evident on upper arms and thighs. I look as if I have been super obese and lost loads of weight. You could...
  11. CantThink

    New to forum,, would like advice

    So are you still having the generalised fatigue? Are you saying that if you didn't exercise, you'd be able to function normally such as go to work, cook, shop, clean etc? Your initial illness sounded somewhat like glandular fever/mono, which is why having an EBV test can be helpful. Perhaps...
  12. CantThink

    Anyone make money online?

    Aside from cognitive impairment, I've found feasibility depends on what type of freelance writing it is. I have done various types in the past, but some of them were too much for me for because they had turnaround times/deadlines which were too tight/urgent. It is often the same situation...
  13. CantThink

    New to forum,, would like advice

    Hi & welcome! So does the rest of your body from shoulders down feel normal? If you do day to day stuff in your home, how do you feel? Are you sleeping well, too much, or too little?
  14. CantThink

    Unpopular idea: witchcraft for general wellbeing?

    I agree 100%. :thumbsup: I'd definitely be interested to hear what happens.
  15. CantThink

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    @bohemian Do you have any access to an Independent Mental Health Advocate or a specialist mental health lawyer?
  16. CantThink

    irregular periods.

    I'm hypothyroid too (on NDT). Thyroid issues (both hyper & hypo) really affected my periods. I remember they went reallyong and heavy, and then short and still heavy. I think when I was hyper they might have been very light. They definitely changed quite noticeably. Eventually I was bleeding...
  17. CantThink

    Rituxan Update

    Really good news! So happy for you. Wishing you a wonderful trip! :thumbsup::woot:
  18. CantThink

    Fear for a worsening disease?

    These can all be symptoms of thyroid issues. Would probably be worth getting sex hormones, prolactin, thyroid (including free T3 and free T4) and growth hormone/IGF-1 done to check their current status.
  19. CantThink

    irregular periods.

    I wasn't taught about babies or menopause haha @hellytheelephant @Fuzzyhead With the weight gain, I would suggest to get your thyroid checked, and also have a look on Thyroid UK forum. You can post there with the results - it is not just for UK people, and experienced members on there will...
  20. CantThink

    Anyone make money online?

    There is a site called Care.com or something like that, which you can advertise dog sitting on and they also have adverts from people look for dog sitters. Also, you can let local veterinarians and pet stores know that you are offering this service, as people sometimes will ask them for a...
  21. CantThink

    POTS relief - could it be?

    Thank you for the review @Xander5 it is helpful to have feedback from someone with M.E. who has actually taken it.
  22. CantThink

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    Just a quick uodate - Following this discussion, and another thread on here linking to an article that Valerie recently wrote about Karina Hansen and published on her blog, I have contacted her and sent her links so that she can read about what has been happening to B. She has indicated that...
  23. CantThink

    How to respond to my doctor...

    I hope it went well! Let us know:woot:
  24. CantThink

    Raw vegan (or almost raw-vegan) issues with CFS

    I see this with veganism and raw vegans a lot. I have seen it in the 'no sugar' and the paleo communities too. It is not just a way of eating - it becomes a fundamentalism. It comes across IMO that there is a certain superiority gained through this way of eating and lifestyle choice. It is...
  25. CantThink

    Raw vegan (or almost raw-vegan) issues with CFS

    I agree. I noticed a lot of the rawists take many supplements and supplementary foods/items. I don't have an issue with that - they can do what they like, but I do ponder how 'natural' is this? It seems counter to a lot of the original ideas behind this way of eating. Of course certain...
  26. CantThink

    Raw vegan (or almost raw-vegan) issues with CFS

    I did too! The Hippocrates Diet. It made me sicker than ever. It was hard work too. One of issues with raw vegan food and veganism is that I never felt energy from food. It seemed to require as much energy to prepare & try to digest it as was contained within it! I felt so weak from it... I...
  27. CantThink

    "Karina Hansen 2: the Ghost in the Room" by Valerie Eliot Smith

    What about B? http://forums.phoenixrising.me/index.php?threads/brian-nicholson-detained-in-psyschiatric-unit-with-me-cfs-for-3-years.40617/
  28. CantThink

    How to respond to my doctor...

    @Gingergrrl I am the same. I believe in my case - due to specific onset - that I have M.E. underlying (as my long term PITA), but there are things/symptoms that have been happening to me in the past 10 years that make me wonder: what are the missing puzzle pieces? I see other PWME who have...
  29. CantThink

    How to respond to my doctor...

    Oh no, I completely understand why you want definitive diagnosis!!! I would too and in fact have pursued it for other diseases I've gained on top of having M.E.. I've only had one so far where I have had to admit defeat, as the doctors were driving me crazy and I just gave up. :alien: I think...