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

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Search results

  1. happy

    I feel significantly better (briefly) when I take a nap in the afternoon

    I discovered that 3 years ago as well and have started taking daily afternoon naps no matter whether I felt like it or not. I used Yoga Nidra meditations to fall asleep as I usually couldn't fall asleep by myself, but I felt so much better after the nap (or even just after lying in my bed with...
  2. happy

    Doing a Whole Genome Sequencing (WGS)

    Just letting you know that Dante Labs has a sale (until end of July 17 2018) on both WGS and WES. I just ordered WGS at 30X for 299 EUR :) Link: https://www.dantelabs.com/
  3. happy

    What is your favorite probiotic

    I can still eat pretty much anything, but energy has been lower for the last few days. I definitely don't feel like exercising now.
  4. happy

    What is your favorite probiotic

    I am now able to eat anything I want :balloons::woot::balloons: (for the past 2 years I had to avoid wheat and most fruits and vegetables). I believe it's thanks to the probiotics (VSL3 + l.reuteri + l.rhamnosus). I've been taking them for a year with little improvement, but a few weeks ago I...
  5. happy

    What is your favorite probiotic

    I'm taking VSL3 and a local brand of "women's probiotic" (l.reuteri and l.rhamnosus). I started taking VSL3 at insistence of my gastroalergologist because I couldn't eat most vegetables and fruit for the last 2 years following several bouts of abx. The other one I take to hopefully decrease the...
  6. happy

    Bacopa

    Ouch, I'm sorry it didn' t go well for you :(
  7. happy

    Bacopa

    I've been taking bacopa for more than a year now, it helps me focus at work and with general cognition like original poster mentioned. I used to take ginko biloba with it and it was a fantastic combo, but unfortunately I don't tolerate that anymore. I take 3 tabs of Himalaya Bacopa every day...
  8. happy

    Creatine supplementation reduces my PEM

    I've been taking a mix containing 2g of creatine monohydrate for the past few weeks and I am seeing some improvement in steps per day and definite improvement in fatigue levels. I can't be sure it's due to what I'm taking though, it could be that my crash which started in February is coming to...
  9. happy

    PEM and pacing

    My understanding of PEM is that worsening of the symptoms should last at least 24 hours, so I don't know if I would call that PEM. Your description of pain after activity reminds me of neuromuscular diseases (but I am not a medical professional). Has your doctor looked in that direction?
  10. happy

    Does this look like PEM to you?

    Yes! It's like first you have to buy the goods, only when you already carry them out of the store do they tell you how much they cost. I had two day CPET test two weeks ago. The first CPET wasn't bad at all... I was more tired than on average day, but not exhausted. Also no other symptom flare...
  11. happy

    burning sensation on skin

    It seems that for me this was part of PEM following 2-day CPET. It's gone now.
  12. happy

    burning sensation on skin

    Did you figure out what this is? It just started for me a week ago. A cold/hot feeling right under the skin, like Icy Hot. Sometimes I feel it on my neck other times shoulders, whole back or arms. For me it usually occurs in early morning, but yesterday it happened in the evening.
  13. happy

    Does this look like PEM to you?

    Let's say that this is my schedule of the week (I work 6 hours per day, but don't do much else): Monday: a friend comes to visit me on top of my 6-hour job (so a very active day for me). That day I feel moderately tired, but not much at all compared to how active I was. - high activity...
  14. happy

    Does this look like PEM to you?

    Yes, it's scary how severe it can get :( As you know there are many PWME that are much much worse off than I am.
  15. happy

    Does this look like PEM to you?

    I do get the flu aches with extreme fatigue (without signs of respiratory infection), but only when I seriously overdo it, which is maybe twice a year. But if I get that far it takes me months to get back, so I don't know if it would be called PEM. The flu aches are the first to go away, fatigue...
  16. happy

    Does this look like PEM to you?

    Ouch... yes I've been there too. Hang on :hug:
  17. happy

    Does this look like PEM to you?

    Thanks for your opinion. Yes, when I push too much I usually see effects the very next day.
  18. happy

    Does this look like PEM to you?

    We are all different and this thing is set up in a way to capture my experience. For me using a computer feels different from hour to hour of course, but that is captured in another variable - the level of fatigue while doing the activity. For the first two hours I might feel OK and then tired...
  19. happy

    Does this look like PEM to you?

    I'm not sure what you're trying to say here... I'm not proposing to anyone to do what I did with the logging and graphs. I'm just wondering if other people also see a delayed fatigue effect (we don't have to call it PEM). Because you know maybe I've been just looking at it too long and I'm...
  20. happy

    Does this look like PEM to you?

    Mendus site looks interesting! Will take time to check it out. Thanks for suggestion :thumbsup: Activity score = my activity estimate + daily steps (measured by Fitbit) My activity estimate is a bit complicated. I have 20 activity types, like Sleeping, Working on computer (sitting), Walking...
  21. happy

    Does this look like PEM to you?

    I apologize for long post... if you decide it's too long to read I will understand! :nerd: I am mildly affected: on average I walk 4500 steps per day and am able to do computer work 6 hrs per day as long as I don't do much else in life. No cooking, minimal dish washing, no other cleaning. In...
  22. happy

    Alternate Immune System Mode?

    Which tests did you have to discover that? I don't get colds either and when I used to, I didn't get a fever. Haven't had a fever in 15 years now.
  23. happy

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Does anyone know how HBOT would compare to actual diving with air or nitrox? I'm assuming effects would be similar (if we forget about the physical preparations for actual dive). I was diving every summer before CFS and ended up quite tired after every dive. I have a SOD2 mutation so perhaps...
  24. happy

    Differences in ME and CFS Symptomology in Patients with Normal and Abnormal Exercise Test Results

    I think the reason why Normal Result and Abnormal Result groups look so similar is that one day exercise test tells us nothing anyway. Many patients who got a normal result on 1-day test would get abnormal result if doing 2-day test and were therefore wrongly categorized. Isn't it interesting...
  25. happy

    ME/CFS Fitbit Community

    I am using Fitbit in entirely different way: to watch that I don't do too many steps per day. It works better this way, at least for me. I would be Moderate to Mild on MEA scale. I work at computer for 6 hours per day, BUT to be able to do it, I don't cook or do any housework except light dish...
  26. happy

    Chronic fatigue traced to mitochondria, Robyn Williams interviews Professor Warren Tate

    @adreno it seems to be PDHC. From the transcript: That is, it's what we call a tricarboxylic acid cycle or the TCA cycle, intermediates seemed to be lower and the enzyme which transitions the energy producing system into the final stage, pyruvate dehydrogenase complex, seems to be defective.
  27. happy

    Trouble with B vitamins

    @BBecOU for some reason I had a ton of acne this summer, even though I stopped experimenting with B vitamins. It didn't matter how much I cleaned my skin or which products I used - it was a nightmare. Then I started taking 500mg of Panthotenic acid (B5) and 800mg of Methylfolate and OMG what a...
  28. happy

    Which test to take next?

    Yeah, maybe I should look into it again. Back then I couldn't find anyone in my country (Slovenia) that would be willing to deviate from standard practice and it was impossible for me to travel because I was too weak. It's ironic, isn't it? That I couldn't get to a specialist back then when my...
  29. happy

    Which test to take next?

    Thanks, @caledonia :) My doctor did test the TSH, FT3 and FT4. The TSH was elevated and I had an appointment with a specialist. They retested and the values came back within reference ranges of the laboratory. As I recall there is quite a debate around what the correct reference ranges are and...
  30. happy

    Which test to take next?

    taniaaust1, thank you so much for your detailed reply! Yes, I have thought about being fructose intolerant. I love fruit, but almost never eat it these days at it leaves me so bloated and gassy :( I get most gas if I eat sweets and vegetables on the same day. Even if a serving of vegetables...