• 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. H

    Substantial improvement with (strange) dietary adjustments

    @Wonkmonk wow, that is very specific!
  2. H

    I think insomnia is largely related to gut - solution tips?

    No sugar at all has helped me😊
  3. H

    Diet change

    @Timaca Thank you so much for your input. I haven’t eaten wheat in years, I feel horrible after eating anything with wheat, dairy, and sugar.😜 I’m gonna play around with a little less grains and see if it makes any difference. Thanks again😊
  4. H

    Diet change

    @Dr.Lynne thank you so much! I eat similar to this but also beans and grains, no eggs. I’m going to skip the grains and see if I feel better. Thanks again for this😊
  5. H

    Diet change

    @ljimbo423 i feel like for me anyway diet is so important! Your diet sounds just like how I ate for about 5 years. It did help me for so many years but the last two I just started feeling worse. The change in how I felt for the first couple of months was remarkable, especially in my pots...
  6. H

    Diet change

    @Viala I completely agree with you! What is mysterious to me is when I switched diets first from a regular American diet to paleo I felt a lot better literally overnight for months and months until gradually back to baseline and then switching to plant based vegan and then feeling great for...
  7. H

    Diet change

    @wabi-sabi veggies and fruit?
  8. H

    Diet change

    @Dr.Lynne I would love to see a “sample menu” of what you eat in a day. I too feel much better eliminating meat which I was adamant about not giving up. I’m getting input from all directions that I should eat more protein even though I’m eating legumes, nuts, veggies, and grains. I would love...
  9. H

    Diet change

    @wabi-sabi Unfortunately I feel worse when I eat ice cream or anything with sugar.
  10. H

    Diet change

    I have had ME/CFS for at least 25 years. About 7 years ago I switched to a Paleo and sometimes keto diet and noticed an immediate change of symptoms. I felt at least 50% better. I ate mostly veggies, small amount of fruit, and meat daily. Within the last two years I have gone back to feeling...
  11. H

    Cold seizures

    @Spanky88 i get something a little similar. If I over do it (which isn’t very much) I get episodes that wake me at night that only happen when I’m dreaming. I wake up freezing white a weird feeling in my head and will start shaking if I don’t immediately wrap my head and body with blankets to...
  12. H

    Should i get this mri tomorrow of brain?

    I was in the same boat 2 months ago. I’m glad I got it just to make sure nothing abnormal in my brain. The MRI came back normal. I have terrible sound sensitivity so the loud banging really drove me crazy. My sound sensitivity was a lot worse for about a week after the imaging and overall...
  13. H

    One step forward, two steps back: treating inflammation and HPA axis

    Thank you- I will experiment with this:)
  14. H

    One step forward, two steps back: treating inflammation and HPA axis

    @Wishful - may I ask how much cumin do you find therapeutic? In ground form?
  15. H

    Don't know where to start - feeling confused

    @lookingforanswers4 I have had ME/Chronic Fatigue Syndrome for at least 20 years. This has been going on for me for about 2 1/2 years now. I feel like I’m on a boat most days. For me it came on suddenly with menopause. My doctors tried to get me to take Lyrica but am not on board for that...
  16. H

    Do you have an active EBV infection? (POLL)

    VCA IGM - Normal EA IGG- 47.6 H VCA IGG 750 H NA IGG 150 H
  17. H

    Study about infection-triggered autoimmune disease, Multiple Sclerosis, EBV and Theiler’s murine encephalomyelitis virus

    @YippeeKi YOW !! I’m one of the unlucky ones. I’m O-Negative. I’ve had ME for at least 25 years.
  18. H

    B12: a simple 5-second poll for everyone

    When I eat foods high in b12 I do seem to feel better:)
  19. H

    Leg hair loss (leg alopecia), a sign of neuropathy in Diabetes, 2019

    Hmmm I thought it was a natural sign of aging, loss of testosterone.
  20. H

    Coronavirus: what your country is doing, how you feel & general discussion

    @ShepherdK wishing you a speedy recovery:). Please keep us updated.
  21. H

    Tryptophan as an IBS gut treatment

    I didn’t experience any IBS for my first 10 years of the illness. Now I have to be very careful with what I eat, especially carbs.
  22. H

    Vitamin D

    I would eat more seafood:)
  23. H

    High Adrenaline before CFS?

    I feel like I still have high adrenaline and have a hard time to calm my nerves
  24. H

    ron davis ME & you & us and glucose?

    This is me also. I feel my best if I eat a good balanced 3 meals but in between lunch and dinner I have to eat cucumbers because I feel like my glucose drops ( I want to eat chocolate chip cookies ha ha).
  25. H

    Justin Bieber is suffering from ME type illness

    Just read on the news that Justin Bieber has been very sick for 2 years with chronic Epstein Barr and Lyme disease. Maybe this will bring some attention to these type of illnesses.
  26. H

    Autoimmune Paleo protocol

    It’s not easy, I’ve been doing this for 4 years. It is worth it but food is #1 priority on your mind all the time because your constantly prepping and or cooking. You do gradually have more energy if you stick with it.
  27. H

    bathroom cleaner

    It is so hard for me to clean like I used to. For the bathrooms I use Dawn dish soap and mix it with white vinegar, it does a pretty good job. I leave on for a couple of minutes before I rinse. After anyone uses the shower I spray the grout on floor and corners with hydrogen peroxide and...
  28. H

    Brain fog that lasts after resistance training

    In my 20s I used to lift weights. This (brain inflammation) was my only symptom. I had to space my workouts out every 3 days because it took me that long to recover. I was first diagnosed with CFS in my late 20s. I’m now 53 and am very sick from years of pushing myself. My advice would be...
  29. H

    Reverse-engineering Mast Cell Issue? (MCAS, MCAD, ACV apple cider vinegar, ketotifen, bicarbonate)

    Following
  30. H

    Hair and nails grow faster during crashes

    I have noticed when I’m at my sickest my nails and hair grow really fast. Has anyone else experienced this? My hair isn’t as thick as it once was and my nails are starting to get ridges but they do grow fast.