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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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  1. Blasted

    What Types of Fatigue Do I Experience Poll

    This is a great description Wolfcub. It's very hard not to overdo it when there is rarely a signal that says 'ok you're on verge of triggering a flare up'. One might reason well maybe if my body gives no signal then I will use a pedometer and track how much I've walked. The problem with that is...
  2. Blasted

    Looking very aged and gaunt when CFS symptoms flare up+bad skin...do other people experience this?

    Continued exertion after using up my small energy reserves causes my face to become incredibly haggard. The quick transformation from handsome to looking like a meth addict (think sunken face) is something to behold.
  3. Blasted

    From brain fog to clarity in 30 minutes

    Our friend nanonug doesn't have any activity on PR in over a month which is odd given how frequently he was posting before. I hope all is well with him.
  4. Blasted

    From brain fog to clarity in 30 minutes

    Watching the new tv series Afflicted has encouraged me to retry a supplement regimen for my SEID. Researching PQQ brought me to this thread. Do you see the supplements you list as a good place to start or might supplements like carnitine, ribose, coq10 be a better jumping off point? I'm trying...
  5. Blasted

    Burning Muscles and Skin

    Carrigon, I see this is an old post but you're the closest someone has come to describing what my flare ups are like minus the IBS stuff. That cold burn that you talk about, I get the same thing, I've heard it referred to as cold fire. When I'm flared up that accompanies the other symptoms you...
  6. Blasted

    How long does your PEM last?

    My PEM hits about 48-72 hours post-exertion and lasts from 2-7 days. The duration, degree of pain and sickness behavior I experience correlate with how active I was. After an active day it's so hard to slow down the next day (in order to avoid the flare up or reduce its severity) since I still...
  7. Blasted

    Dr Jekyll and Mr hyde

    My TSH is back to normal possibly due to me discontinuing opioids. I still need to check my cortisol levels. As my condition affects mostly my nerves (presumably just the small nerve fibers as my nerve conduction test was normal), I think that my next step will be to get a skin biopsy. I was...
  8. Blasted

    Massive Brain Fog evolves to Head Pressure and sometimes Headache

  9. Blasted

    Anyone with experience taking immunosuppresants for neuron inflammation?

    I realize that immuno-suppresive therapy would only be indicated in cases where the nerves are inflamed due to an underlying auto-immune condition such as Sjogrens for ex. However, I'd be very interested to hear from people who experience flare ups of their nerves/neurons and who have taken...
  10. Blasted

    Dr Jekyll and Mr hyde

    Thx. I'll certainly investigate the possibility of adrenal issues.
  11. Blasted

    Brain Fog Vs Cognitive Impairment

    It was working off of those articles that prompted me to wonder if people on PR who talk about experiencing brain fog were actually referring to a clouding of their consciousness in which case it wouldn't be as fitting a descriptor for me as it would be for you. I guess it depends if we agree...
  12. Blasted

    Dr Jekyll and Mr hyde

    Before this started 8 years ago, I experienced 4 months of acute physical and psychological stress due to living with a crazy roommate. After that I was unable to deal with stress at work and got burnt out shortly thereafter. It felt like I had fried my brain. My mental burnout segued into this...
  13. Blasted

    Dr Jekyll and Mr hyde

    Stress and lack of sleep are triggers for me as well, yes. Not temperature afaik. My TSH has been on a steady rise the last few years (from to 3.8 to 6.7 currently), still waiting on new T3/T4 results and cortisol as well. Will update.
  14. Blasted

    Brain Fog Vs Cognitive Impairment

    Ok that makes sense. So I won't exclude myself from the brain fog camp due solely to lack of changes in arousal/wakefulness.
  15. Blasted

    Brain Fog Vs Cognitive Impairment

    Yes I agree with this. It seems that the descriptive term 'cognitive impairment' has been appropriated as a defined medical condition (pre-dementia) which kind of precludes us from using it to describe what we're experiencing. However, I really like how you got around this with the phrase 'mild...
  16. Blasted

    Brain Fog Vs Cognitive Impairment

    The distinction between these two symptoms is not clear to me... Brain fog seems to entail a foggy mind due to a disturbance in arousal (wakefulness) while cognitive impairment would be a dementia-like impairment of the mind without an associated disturbance in wakefulness or arousal. So if...
  17. Blasted

    Dr Jekyll and Mr hyde

    I seem to have a threshold, like say I walk 10 blocks I probably won't trigger it but if I walk 15 blocks in one go then I probably will. It's not an exact science but it's pretty consistent. Needless to say I avoid exercise. Stress and lack of sleep can also act as triggers. Funny thing is that...
  18. Blasted

    Dr Jekyll and Mr hyde

    Would really appreciate some thoughts on whether or not this seems like CFS to you and what could be behind such a reaction... Below is what I experience during a flare up. Once the flare up clears and I get over the residual depressed mental state, I'm fine. Post Exertional Malaise (delayed...
  19. Blasted

    sodium bicarb, acidosis, and my BP went up a tad ?? and Sjogrens. :)

    Hi MeSci, yes I'm sure it was anxiety driven in my case. It was years before I got CFS (if that's what I have) and I was going through a hard time and I'd head to University, get over-anxious, over-breathe and then become over alkaline. Ofc I had no clue what was going on at the time, I was just...
  20. Blasted

    sodium bicarb, acidosis, and my BP went up a tad ?? and Sjogrens. :)

    I'm toying with the idea that the 'burning' arms, leg, face I get during my post-exertional flare ups are due to low ph/high anions. I find it interesting that the burning sensation is the first symptom I experience preceding the brain fog, myalgia and muscle tenderness. If this burning...