• 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.

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Search results

  1. M

    Cfs outbreaks explanation

    I don't believe in outbreaks when I see this list, where the last one took place over 20 years ago: http://me-pedia.org/wiki/List_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome_outbreaks
  2. M

    Can nausea and insomnia be a PEM symptom?

    I don't think so. It is something between nausea & cough, a deep cough.
  3. M

    Can nausea and insomnia be a PEM symptom?

    I think - yes. When I exert too much I definitely have troubles with getting asleep. Also, after exertion I have a symptom that I would call it a "nausea cough".
  4. M

    Tolerable Antidepressants

    I am not sure if antidepressants work for people with cfs. I tried many of them and I found that fluoxetine worked for some time as a stimulant - not antidepressant. As the disease progressed I stopped tolerating any of them. Now I use tranxene 5-10mg and tegretol 200mg. I had a clinical...
  5. M

    Depression is a physical illness which could be treated with anti-inflammatory drugs, scientists sug

    In your case it could be the oxidative stress factor.
  6. M

    Depression is a physical illness which could be treated with anti-inflammatory drugs, scientists sug

    Actually there are a few concepts of depression - mitochondrial, inflammatory, oxidative, and neurotransmitter imbalance.
  7. M

    Alternate Immune System Mode?

    As I see it, I think since I developed ME/CFS my body was too weak to let me know that infections occurred. To put it simpler I guess that in healthy people there is a stronger manifestation of infections (mucous, redness, inflammation) and also overactive immune system. As soon as you become...
  8. M

    I can have a psychiatric origin?

    It is quite usual that CFS/ME sufferers react badly to classical antidepressants. Also, trauma often correlates with maladaptative conditions, not just real problems in life which are subjective. Something which is easy to handle by a healthy person may be unbearable for others. You can have...
  9. M

    Dr Martin Rhisiart 'killed himself after ME diagnosis' BBC news South East Wales

    So sad, lack of sleep may induce strong suicidal ideation. I think his case was actually very similar to mine. I was also diagnosed with dep&anxiety.
  10. M

    Could CFS/ME be an endothelial autoimmune disease, which triggers the cell danger respon

    My father died from vasculitis, and till the end of his terrible illness he didn't have classic ME symptoms. He was weak but without PEM. Certainly his brain was also involved in earlier stages of the disease. As I see it, ME is some kind of metabolic/mitochondrial dysfunction of the brain.
  11. M

    Stop taking all supplements and or drugs?

    @rosie26 Second that. When I have intense legs paresthesia I know for sure that I am in a very weak state.
  12. M

    Variation in Working Memory

    @rosie26 I have always had ME and before I suspected I had something like low grade chronic depression called dysthymia. But I was always motivated, did not have symptoms of classic depression, so now I think it was just ME (my throat was always inflamed). Nowadays I do have full blown...
  13. M

    Stop taking all supplements and or drugs?

    I have spent a lot of money for supplements which failed because I can't tolerate them any longer. I take only vitamins and minerals in normal doses.
  14. M

    Homeopathy poll

    I did not try homeopathy. For me it works as placebo, sometimes placebo is quite close to marketed drugs if we consider efficacy, so I don't neglect it either.
  15. M

    What induced your ME?

    My me is chronic, I was born with the disease with its progressive nature. Of course there were some incidents that lowered my condition faster than expected but that is inevitable especially if you experiment and search for solutions.
  16. M

    Hot springs - have you thought about it?

    I can't tolerate heat. When summer ends I worry that the next one will come within 9 months or so ;)
  17. M

    Variation in Working Memory

    Actually for short term task I don't have huge problems. I could make a short phone call without anyone noticing I am so sick. Also, I make meals, clean the apartment but then after 2 days I feel so bad (like my head is empty without brain cells) by not only having pem but also clinical...
  18. M

    Chiari 1 - please inform yourself on this

    I have chiari and had a decompression surgery. Actually it helped a lot with numbness and neck pain.
  19. M

    Never thirsty?

    Long time ago when I was pretty active, I also drank small amounts of fluid. I would say nothing between normal meals. Now the situation has changed. Although I am not thirsty, water with electrolytes gives me more energy, definitely.
  20. M

    Bedbounders: how do you get essential medical treatment?

    I don't get any treatment at all. I can't imagine staying at a hospital or any public place. What is interesting I can manage to live on my own. I am not sure how long it will last but that is how it goes at the moment.
  21. M

    Brain feels enflamed

    What I feel is cranial nerves paresthesia. It correlates with wet legs feeling and overloading phenomena.
  22. M

    procto-Glyvenol

    I think it is really worth it to share that I have noticed a big improvement of my functioning just after 2 hours of using procto-Glyvenol. It was intended to relieve my haemorrhoids only but I am almost certain it works centrally on the inflammation process (in the brain). I will keep you...
  23. M

    My son has just been diagnosed with Autism

    Yes, this was a bit unfortunate, but in my country they don't even diagnose ME/CFS :(
  24. M

    My son has just been diagnosed with Autism

    Probably most of the chronic neuropsychiatric diseases could be passed down genetically. Autism, CFS are only a group of symptoms that may overlap. So, you can inherit symptoms , weaknesses that could be named differently.
  25. M

    How to create more stomach acid?

    It stimulates stomach to create acid
  26. M

    How to create more stomach acid?

    Green tea works pretty well in that area.
  27. M

    Head spins linked to POTS?

    The head spins are probably due to the lower perfusion of the brain until compensation with increased heart rate is reached.
  28. M

    Never get colds or flus anymore? Here's one theory as to why....

    I think that you do respond to viruses but you don't notice it. The body and your immune system is to weak to increase the temperature, make the symptoms clear. From 2002 until recently I did not have symptoms too. Recently I have noticed that I do have frequent infections. The only symptom is...
  29. M

    Mitochondrial Myopathy - high dose B1&B2

    Has anyone tried high dose thiamine and/or riboflavin as suggested in the article below? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4748504/
  30. M

    Poll: what's your pattern of muscle weakness?

    I have severe muscle loss. It concerns my trapezius, upper arms, neck, face and legs. My back (apart from trapezius) is actually intact. I do also have lazy sphincter muscles without incontinence.