• 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. Eneia

    There will never be a cure for CFS...

    Right now my solution is to keep looking for good palliative care, i.e. anything that diminishes symptoms. I too believe that we have different diseases causing the same symptoms (esp. PEM) that research has failed to find a drug for. If I had any energy I would focus on any other illness that...
  2. Eneia

    Incredible improvements with Helminthic Therapy

    Sounds like one less symptom to deal with is good news @Mylifesobright! May I know whar you use for fatigue please?
  3. Eneia

    Suicide vs Modafinil

    Sorry to hear @Kenny Banya
  4. Eneia

    Suicide vs Modafinil

    Modafinil was one of the first drugs I ever tried (a friend was narcoleptic) and it didn’t do anything noticeable, in spite of me thinking this would be my saviour (as you want to believe when you first hear of something after not knowing what you have). This friend by the way was taking it...
  5. Eneia

    Ambition and ME/CFS

    I’ll say one thing today about this (lest I start crying) ME is a shitty illness. For many other handicaps, there is no going back, so it’s loss, grief, acceptance. For us, it feels like we could recover (example of a few days where we were back to normal, I had one in 30 years myself), so how...
  6. Eneia

    Energy saving tips for keeping clean

    I stopped washing my hair with shampoo about 4 years ago. I only do what is called co-washing, which is washing with hair conditioner only, with a silicon-free conditioner (to avoid build-up that would require a cleansing shampoo). I had to do it as my hair started looking greasy 2 days after a...
  7. Eneia

    Niacin for sleep

    Just passing by, I thought I’d add my experience... I’ve been on Niacin + magnesium malate in the evening for over 3 months now and it still works like a charm to fall asleep quickly when I wake up during the night.(I may use melatonin sometimes to falll asleep, but usually I feel tired a few...
  8. Eneia

    I am having the best day...

    Indeed. Every time something makes me feel better this knowledge of what could cause a crash has to be updated. I put myself in a crash 4 months ago, the Mg and Se and Niacin make me feel better but I know the crash is still there and I don't know anymore when I am doing too much! Very very...
  9. Eneia

    I am having the best day...

    @TiredBill whatever helps, however long... we have to keep trying stuff, and improve wherever we can. Some things will make a big difference, some won’t, it’s heartbreaking when a new marvelous thing doesn’t deliver long term, but here also lies our strength: we don’t give up. I do hope you did...
  10. Eneia

    I am having the best day...

    Funny! @gregh286 what other things have worked for you previously? What did you try, that gave you a positive result? Just wondering if we have reacted to the same stuff.
  11. Eneia

    I am having the best day...

    @echobravo I take it at the *end* of my evening meal to avoid a huge flush. I had tablets left out of their box, no idea what I took, 100 or 500mg, now using capsules in the past few days, 500mg, that was too much flush-wise, so taking 2/3 opening capsule, so approx 333mg and flush isnt too...
  12. Eneia

    I am having the best day...

    @TiredBill Well as I started “biohacking” using some apps, I started wondering to myself: “Why do they need to ask how I’m feeling once they’ve asked how I slept??”. There is an exact correlation between both for me. Very recently, I started using magnesium and niacin (and selenium, irrelevent...
  13. Eneia

    Constant crash anyone?

    Practicalities: the Phillips blue glo has been a godsend on my worst years for SAD. Any current model would work too. https://www.gizmodo.com.au/2008/11/sad_light_therapy_clock_makes_you_less_sad-2/ Maria Ciley's Flylady habits of morning/evening routine have gotten me out of the bad rut...
  14. Eneia

    Best earbuds for little sounds such as TV and talking

    Hearos (you get them as walgreens in the US, on Amazon in the UK). The least itchy I have found, 32dB I think, they are the best I have tried so far. I also use ear defenders (highest dB model) Peltors that do help for every nose but voice (voice is muffled but not stopped as it's meant to be...
  15. Eneia

    Good sleep aid for nine to fiver?

    Well I guess it might be part of your phobia, but I manage with .3-5mg (yes .3, physiological dose) for the first part of the night, and second part 5htp. I will most often need to eat as well before being able to fall asleep. Orange juice and salt when you wake up was meant to be another...
  16. Eneia

    Sleep Tracker - Anyone can recommend one?

    This is what I ended up purchasing, as you can use the MI band2 to monitor your heart rate and alarm if it goes higher (which you can't really do with fitbit in spite of the request being made daily by users and totally ignored since the start). You do that with the MI tool sapp. Didnt bother...
  17. Eneia

    My gut flora results

    Regarding Candida, I believe it can be eradicated. The problem, again my personal belief, is that it seems to fill a void in the microbiome, so if it doesn't get replaced by something else, it will come back. A round of additional probiotics like mentioned by @Lassesen on his blog...
  18. Eneia

    Article When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS

    Same here, I wished I had all we have now when I was a teenager and thought I was the only person in the world who had this! Happy holidays to everyone, whatever it means for each of us.
  19. Eneia

    Advice on friction over housework please (CFS and OCD don't mix!)

    Late reply but for anyone else who has issues like this (it's bully avoidance with the shared stuff I'm talking about): if you can afford it buy the minimum you need to cook, to use just for yourself. Have a pan, cutlery etc. if it will be obvious that something is missing and the bully will...
  20. Eneia

    Suggestions on How to manage organizing pills?

    I store all my current bottles in a box and replenish as needed in this weekly solution: Ez pill pouches (I think t was called like that, now Walgreens have copied them. They are quality mini ziploc bags. I buy them when I am in the US). Usual way: If what you take is always the same, you can...
  21. Eneia

    Comment by 'Eneia' in 'Firmicutes/Bacteroidetes Ratio Seen in CFS and other diseases'

    Sorry I'm too brain fogged, does this mean we should avoid dairy and capsaicin if we have CFS? I will click on the links to try and answer this myself!
    • Eneia
    • Blog entry comment
  22. Eneia

    Comment by 'Eneia' in 'And now welcome to SIBO land'

    Of course it is a product of the current lifestyle (among other reasons). Where did I read someone testing his son's microbiome before and after a 7-day McDonald's only diet, to find how much of the good bacteria was destroyed is such a short time. People don't tend to share much avout their...
    • Eneia
    • Blog entry comment
  23. Eneia

    Anyone had significant success with coconut oil (re: brain fog) & how do you take it ?

    Old thread but might be useful to someone: Biona (available in Europe, can't remember if they export to the US) makes an organic coconut oil that is lightly steamed to remove the coconut taste. It then can really be used anywhere without feeling sickly. My fav ways: - blend it in a smoothie...