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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. SickOfSickness

    Fatigue May Be the Wrong Term

    Sorry you're dealing with those neighbors!
  2. SickOfSickness

    Frustrated with "supportive" family encouraging me to work

    That is so frustrating. People can be so unaware of their privilege and of what others are going through. So many especially don't get health issues when it comes to anyone who is younger. And with some types of medical issues, some will assume the person just needs to try harder or be more...
  3. SickOfSickness

    Electric wheelchair recommendations?

    Lightweight, foldable, FSA eligible, and excellent turning radius will limit your options a lot. It seems you also want to use it out on pavement and sidewalks sometimes (with your family's help)? Most wheelchairs don't do everything, unless they are the really expensive kind. They tend to be...
  4. SickOfSickness

    Cervical smear test

    Great that you got this accomplished.
  5. SickOfSickness

    How do you cook your legumes?

    Yes, soaking before would be even softer. Also if you add a little of an acidic medium to the soaking water. Lemon or apple cider vinegar or other. There are also smaller chickpeas available, if you don't already have those. Or split chickpeas.
  6. SickOfSickness

    Medicinal Mushrooms to boost NK cells and modulate immune system?

    Yeah, avoid walnuts. I've read that most people can tolerate the level in potatoes and corn even if they can't handle much glutamate. Cheeses also vary by type. I feel that glutamate tolerance will vary. Especially if someone has another intolerance or sensitivity that is varying (because of...
  7. SickOfSickness

    Medicinal Mushrooms to boost NK cells and modulate immune system?

    Shiitake are one of the worst for glutamate. Some mushrooms have about 1/7th as much as shiitake. Unfortunately, glutamate.org says that mushroom extract has the same glutamate. I'm unsure if it's the same because the volume ingested is much lower. I don't know if the extract has more...
  8. SickOfSickness

    EEG to determine possible causes of hypersensitivity to environmental stimuli

    Just a quick thought: I wonder if it could be related to high levels of excitatory glutamates.
  9. SickOfSickness

    Chronic Vertigo

    I am open to receiving PMs.
  10. SickOfSickness

    Chronic Vertigo

    In my opinion, many with vertigo are affected by things that a cranial osteopath (and some chiropractors and others) can help with. Mold exposure can be a possible cause as well. Some people don't realize they are having exposure because the mold is only in the hidden areas of their washer...
  11. SickOfSickness

    Loneliness ...how do u cope

    I think it's good to have some face-to-face contact when possible. Could be just few minutes speaking to a neighbor or delivery person. And to have more voice contact. Better if possible to do with video (Zoom, Facetime, etc). Voice contact could be Skyping or calling another ill person just...
  12. SickOfSickness

    High dose vitamin B1 (thiamine)

    I believe it requires molybdenum. Selenium too? B12?
  13. SickOfSickness

    I Have confirmed that earthing does improve HRV (and vagal tone) instantly.

    Wow, thank you for sharing. I would be curious if smaller doses helped regularly, like earthing for only 10-90 mins a day.
  14. SickOfSickness

    I Have confirmed that earthing does improve HRV (and vagal tone) instantly.

    Even after weeks of not earthing during sleep?
  15. SickOfSickness

    Advice needed pls

    Decaf green tea helps me with alertness and also reducing anxiety. I don't think it has much risk (like caffeine does) but decaf would still have a small amount of caffeine in it. Say that you sprained your ankle and that's why you are leaning on the chair?
  16. SickOfSickness

    Advice needed pls

    I would avoid taking a new herb/supplement for the first time before a talk :( Also taking it in your final days before the talk. Are you already very aware of how you react to caffeine? I think some people get too anxious or hyped up. I would avoid carbs. I think you might need to say that...
  17. SickOfSickness

    SSDI application: phone calls

    Yeah, be careful.
  18. SickOfSickness

    SSDI application: phone calls

    I have heard that DDS and/or SSA employees have to write notes after having contact. One problem is that the disabled person might be trying to sound polite, nice, perky, etc (because we are used to trying to hide our illness), and then the employee would write down that they sounded energetic...
  19. SickOfSickness

    Don't know where to start - feeling confused

    You could see a vestibular disorder specialist.
  20. SickOfSickness

    Need advice for long-distance car traveling

    Seems like your ability to tolerate things will be different after the CPET :( Maybe not immediately. I have sometimes laid across the back seat with a seatbelt (loose, but on). It's not completely flat but was kind of ok. With some kind of padding to help even things out.
  21. SickOfSickness

    Vertical ridges on fingernails

    I have a pinch under my left ribcage. For me it's related to tightness and misalignment in my upper spine.
  22. SickOfSickness

    has anyone used a saunders cervical traction device?

    A little, I think that my body wasn't "ready" for that at the time. So I don't think it was right for me. I think everyone needs to see how it feels for their body.
  23. SickOfSickness

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    I also had neck pain, dizziness, numbness in limbs, unrefreshing sleep, inability to relax, etc. Not saying you have the same cause(s) as me. I highly recommend trying probiotics and supplements for the inability to relax and to improve sleep.
  24. SickOfSickness

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    I was also sick from a young age. And fixing digestive issues helped to fix my jaw pain. I would also suggest you get a 23andme genetic test (or maybe a better one through a doctor) and look at your methylation and detox SNPs.
  25. SickOfSickness

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    I would suggest reading my "basics" thread which has a lot in it. Now I think so much has a digestive/food allergy underlying cause, especially for people who have been sick since childhood. I would also recommend a good colostrum for allergies, immune system, etc and l-lysine to help with some...
  26. SickOfSickness

    Help paying for supplements?

    Good luck. There was speculation that my insurance would cover my self-administered injections (picked up at pharmacy) if I had a nurse gave me an in-home lesson on injection (covered by insurance). I did not try to follow up on that option.
  27. SickOfSickness

    Help paying for supplements?

    Yep, it's horrible. Certain prescribed supplements are covered, but most of them would need a blood test showing too-low levels of D3, B12, iron, etc for coverage. But I believe doctors can also get other things covered based upon diagnosis instead of blood test. Such as another B vitamin for...
  28. SickOfSickness

    Pacing Help (also: paralysis!)

    Don't know if these would help you, but in case you haven't seen these: https://forums.phoenixrising.me/threads/supplements-and-drugs-that-reduce-or-prevent-pem-post-exertional-malaise.48438/ For me and others, the pre-exertion and post-exertion supplements allow us to do more and recover faster.