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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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Search results

  1. L'engle

    ME as a permenant damage to the central nervous system

    It's probably immune based as a start but then as we are forced to overdo things and keep upright postures etc, damage could occur. When I collapsed at work 15 years ago, I felt a "clunk" or "thunk" feeling in the back of my head a few seconds before having to sink to the floor. I was...
  2. L'engle

    ME as a permenant damage to the central nervous system

    I tend to agree. Sometimes I think my body might be able to improve significantly but brain fog and other neurological symptoms it seems less likely. The long covid brain scans are showing damage at a small scale and I think this will be a most likely diagnostic for us as well.
  3. L'engle

    I have more sense than a team of Neurologists

    :bang-head: :bang-head::bang-head:
  4. L'engle

    My son has been sleeping 14 to 16 hrs a day

    How did you treat it? I think my mum has this.
  5. L'engle

    My son has been sleeping 14 to 16 hrs a day

    Yes, short grain brown rice is much easier to eat than long grain. Cal-rose rice or others like that are good. Long grain brown rice can be hard to stomach.
  6. L'engle

    My son has been sleeping 14 to 16 hrs a day

    Melatonin would likely make him even sleepier. Maybe he just really needs sleep for a few days to finally get over the crash from the overnight appointment. Is he bothered by how much he is sleeping, or is he just very out of it?
  7. L'engle

    Biomarker study MedUni Vienna

    Though I do think researchers are making great efforts. They just rarely get the funding to continue with the larger studies that are needed.
  8. L'engle

    Biomarker study MedUni Vienna

    How many times have we heard 'possible biomarker'.
  9. L'engle

    Why is my fatigue down while I have my menstrual period?

    Might be worth trying zinc as a simple way to balance estrogen dominance. Definitely good to get tests and find out as much as you can!
  10. L'engle

    Severe LDN side effects continuing even after stopping the medication?

    Operator overloading has its uses, in IT and elsewhere. This is off-topic, and not something we're going to solve here.
  11. L'engle

    Severe LDN side effects continuing even after stopping the medication?

    You are not careless. Avoiding side effects is virtually impossible. You aren't the cause of any of this. :hug: :hug::hug:
  12. L'engle

    Severe LDN side effects continuing even after stopping the medication?

    If I understand correctly 'they' are one (1) non-binary person. English doesn't have a singular non-gendered pronoun so the use of 'they' has become standard practice.
  13. L'engle

    Medicinal Mushrooms to boost NK cells and modulate immune system?

    Looking back, the increase in physical energy may have been from liposomal CoQ10, 25mg. I still get the sedating effects from the curcumin/chaga/ashwagandha, but I haven't gotten the increase in physical energy. I also took a chromium and vanadium supplement, though this seems less likely to be...
  14. L'engle

    Severe LDN side effects continuing even after stopping the medication?

    The first time I took a very small amount of LDN I couldn't sleep for three days. It normalized eventually.
  15. L'engle

    Medicinal Mushrooms to boost NK cells and modulate immune system?

    Reishi gives me some physical energy. Doesn't seem to cause a crash. The curcumin supplement I bought also has chaga (100mg). It seems to help physical energy as well, though I don't know which thing is doing what. It also has a small amount of ashwaganda. Strangely it is also making me...
  16. L'engle

    Social Anxiety being related to CFS

    Some of us are kind of jaded and cynical, from years of hearing theories. Don't let that stop you from sharing your ideas!
  17. L'engle

    Social Anxiety being related to CFS

    It's not a bad idea. This is a forum for sharing thoughts including theories of illness. Be interesting to see what you come up with.
  18. L'engle

    For those of you who are moderate

    I find slow movement is worse too. I end up leaning on shopping carts and counters. Especially if it is airless in the building.
  19. L'engle

    For those of you who are moderate

    I'm having something like this. It's almost guaranteed to end so I'm trying to enjoy it while it lasts. Maybe the anti-inflammatory supplement I just started.
  20. L'engle

    Substantial improvement with (strange) dietary adjustments

    Legumes and nightshades are high in lithium. Not sure if this is a factor for you or something else. I've been able to handle more nightshades since I started taking boron. I still don't trust them as a regular food. Like you I can eat most things once but continuing to eat them causes...
  21. L'engle

    Pacing success?? What's yours...

    I could see it working for someone who has very compromised physical energy but fairly unlimited mental energy. Some people do seem to have that pattern where their cognitive abilities are not affected much. For me it would take too much away from my limited mental energy to do that.
  22. L'engle

    Pacing success?? What's yours...

    I haven't been able to. Most activities don't lend themselves to being cut short suddenly and picked up another day halfway through. Maybe some people can rigidly do the exact amount of activity each day and not have worsened symptoms. Some people have reported setting timers on everything...
  23. L'engle

    Social Anxiety being related to CFS

    I would think if they were strongly related, people with ME would be fine with doing solitary activities. People I know who are introverted and healthy tend to thrive with solitary physical activity. There may be more neurodivergent people with ME. The illness is certainly nerve-wracking.
  24. L'engle

    For those of you who are moderate

    I agree. I do much better with seated or lying down exercise that builds strength or flexibility. I used to love taking long walks when I was healthy! I've kept doing it to the point where I seriously overdid things so many times that it just doesn't even seem enjoyable anymore.
  25. L'engle

    For those of you who are moderate

    It sounds great in theory but there aren't usually places to sit and rest every three minutes of walking. Resting standing up can be worse than walking. Also if its cold or rainy stopping can just leave you more chilled and damp. It's generally socially unacceptable to stop in front of...
  26. L'engle

    Supplement ideas for neuropathy

    Phone calls are incredibly draining.
  27. L'engle

    Trying Lactofferin (jarrow), anyone feel more tired at first?

    I had reactions like this from kefir and other probiotics. Lactoferrin might have some of the same effects, though I don't know a ton about it. The symptoms went away when I stopped it. Hopefully it will be the same for your son. It might take him a few days.
  28. L'engle

    Managing Potassium Deficiency - Share your experience

    I have done potassium foot soaks with powder when I didn't want to keep taking the capsules. I don't know how much translates to a capsule but if you try it try like 1 minute of soaking on a given amount of powder mixed in the water, and see if you can gauge how that is stacking up to a capsule...
  29. L'engle

    Poll about duration of low potassium (or other deficiencies) after b12/folate

    Unfortunately it's like this in North America too. People with means can pay out of it but if you need to interact with social services, the word of a naturopath or TCM (traditional chinese medicine) doctor doesn't carry much weight.