• 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. acouchy

    Human papillomavirus infection?

    The water park was really yuck. My 3 yr old cousin had to go to the bathroom and the bathroom floor was 1/2" deep in pool water/ toilet water and toilet paper. Neither of us had shoes on and I immediately picked her up and carried her so her little feet wouldn't be exposed to that slurry of who...
  2. acouchy

    Human papillomavirus infection?

    I have read that ME might be caused by many viruses but don't see much about the human papillomavirus (HPV). Have any studies been done on HPV and ME? I am curious because 1-2 yrs before I became ill with ME I developed a very severe case of plantar warts on my feet from an exposure at a...
  3. acouchy

    Just terrified.

    I wish we had some real answers. Definitely feels like adrenaline is involved. It happens so very fast. Lasts under a minute.
  4. acouchy

    Just terrified.

    I am terrified of a sorta new symptom I am having. I am guessing it is cardiovascular but really have no idea. I get this fluttery feeling in my lower throat/upper chest. Messes with my breathing. Then I feel very, very, very faint. It is a really intense blackout or die feeling. Then my...
  5. acouchy

    Tyramine / Amine Intolerence?

    So last night I had some sort of extreme vertigo attack. I suddenly became very dizzy and could not see or think straight. I immediately layed down to see if it would help. The super dizziness mostly subsided but I still had a very strong feeling of unwell. I decided to check my BP. Standing it...
  6. acouchy

    New research on treating migraines with ketone supplementation

    I tried the south beach diet many years ago to lose weight after I was misdiagnosed with depression and put on antidepressants that made me fat. At the time, I did not realize the first portion of it was ketogenic. I only lasted a few weeks because it was so difficult to eat out and stay true to...
  7. acouchy

    New research on treating migraines with ketone supplementation

    Was not sure where to post this. Hopefully this is the correct location. Not directly related to ME/CFS but many of us suffer from headaches and migraines. When I read this article I thought this could be the connection. From the article... "Increasing evidence suggests an energy deficit...
  8. acouchy

    Mycoplasma Pneumonia causing neurological symptoms?

    I don't really understand why they won't try to treat it either. I have read that it usually lasts 3 weeks and goes away. Mine was active for at least 5 months (that was the last time I was tested) and that is not normal. You would think that your body must be working constantly trying to get...
  9. acouchy

    Mycoplasma Pneumonia causing neurological symptoms?

    It is fascinating... I am not sure how accurate the test is. Hopefully someone who knows more will respond. I know my specialist thought the lyme test here (Canada) is pretty useless. At the time I was tested I had zero respiratory symptoms. I was shocked. I hadn't had a cold or flu of any sort...
  10. acouchy

    Mycoplasma Pneumonia causing neurological symptoms?

    Could mycoplasma pneumonia be responsible for neurological symptoms? I have had ME for 21 years. 7 years ago I started experiencing 7 day migraines. Not long after the migraines started I also starting having episodes of vertigo. Around the same time I was seeing a specialist who tested me for a...
  11. acouchy

    Long QT Syndrome?

    Interesting. I also had an echocardiogram done about a month ago and everything was fine. I have been complaining to my GP for a few years that my lips look blue. I also have also noticed that I have changes in the colouring of my finger and toe nails. It does appear to be something going on...
  12. acouchy

    Long QT Syndrome?

    Thanks for the info. I will definitely look into it.
  13. acouchy

    Long QT Syndrome?

    Just got some test results back from my GP. My GP sent me for a electrocardiogram because I suspected that I have orthostatic hypotension. The result came back showing that I may have Long QT Syndrome (LQTS). Totally caught off guard by this. I don't think it is genetic and we looked up...
  14. acouchy

    Peter White (PACE) in the Guardian

    Unbelievable yet at the same time I am not surprised. I am seriously beginning to believe that some people live in a parallel universe that every now and then crosses paths with reality. Only way I can even begin to comprehend how they see things so differently. Maybe CBT would help.
  15. acouchy

    Creepy posts by James Coyne to Jeanette Burmeister

    Watching all this unfold is truly disturbing. He is not an ME/CFS patient or advocate. He will never fully understand what it is like to have this illness and just how little physical and mental energy we have. Pwme should ignore him. We should be using the little energy we have to support...
  16. acouchy

    Vestibular Migraine?

    I am not sure it is POTS. It started out more like BPPV. I get really dizzy when I lay back and when I lay on my side or look up or down. I can not lay flat. Resting and stillness does not seem to help. I sleep propped up on 5 pillows. Gotten to the point where I am dizzy all the time now. I...
  17. acouchy

    Vestibular Migraine?

    Just came across an article about vestibular migraines. Many of the symptoms listed match my list... Chronic daily headaches, Dizziness, Vertigo, Feeling of floating or “bowling ball head”, Nausea, Heartburn, Diarrhea, Fatigue, Neck Pain, Rib Cage Pain, Blurry Vision, Anxiety, Brain Fog, Heat...
  18. acouchy

    Can You Work?

    No for me. Haven't worked for someone else for about 7 yrs. I do have my own little online business. Might be able to spend 2-8 hrs a week working on it. Not very good at it but it helps keep me sane. I worked at a very physical job for the first 11 years of my illness. I did it by not having...
  19. acouchy

    Reduced diversity and altered composition of the gut microbiome in individuals with ME/CFS

    I was listening to a science podcast (TWIS) last night and I was shocked when I heard them talk about this study. They reported the facts and I did not hear anything negative. Made me happy. :) Maybe things really are beginning to change. Anyways, you can find the podcast webpage here...
  20. acouchy

    Pix/reports from the #Missing Millions protests today

    That is great news. So nice to hear that people are taking a real interest. I have not had much luck in my attempts to raise awareness and have had some heartbreaking things happen lately. I really needed some good news to help restore my faith in humanity. I agree with you about having a full...
  21. acouchy

    Pix/reports from the #Missing Millions protests today

    I was looking through the Instagram posts for #MIllionsMissing and saw this post... https://www.instagram.com/p/BF10wp5kqQh/?taken-by=ubthecure Appears to be posted by someone walking by who took an interest... made my day. :)
  22. acouchy

    PACE data request FS50600710 (not the appeal case)

    Question... When was the comment about more FOI requests made on here?
  23. acouchy

    PACE data request FS50600710 (not the appeal case)

    Yup. Difficult to say "patient" when I do not have a doctor. I have been using "unwilling ME/CFS participant". :)
  24. acouchy

    What do you call your illness?

    That would be fun.:)
  25. acouchy

    What do you call your illness?

    I wish this illness had only one really good name and a better acronym... I am wanting to make some higher end awareness jewelry so I can donate a percentage to research. I am probably overthinking it. I am totally indecisive not only about this but also about pretty much everything in my life...
  26. acouchy

    What do you call your illness?

    I agree with that. When I do have to say Chronic Fatigue Syndrome I cringe. It really does make me feel ashamed. After I tell myself that it not my fault and I did nothing to deserve this illness and that it is just a name. But really it is not just a name. It is a really bad name that is...
  27. acouchy

    What do you call your illness?

    Probably better off with saying ME. Whenever I say Myalgic Encephalomyelitis I get a... what the what? Yup, it is a mouthful.
  28. acouchy

    What do you call your illness?

    Yup, Damned if you do... damned if you don't. I have the same problem. If I say ME I get a blank look. Gave my GP a printout of the ME International Consensus Criteria but I have no idea if he read it or not. Dread finding out. I usually just try to talk about whatever symptom is bothering me at...
  29. acouchy

    What do you call your illness?

    It is sad that you get more sympathy for an acute short-term injury than you do for a chronic long-term one. Lives are destroyed by this illness and yet most of society has zero empathy. Life is pretty unbelievable at times.
  30. acouchy

    What do you call your illness?

    :thumbsup: Totally understandable! Every morning I wake up and think F^&* that (last 18 years of my ill life) wasn't a bad dream. In my head I call this illness an effing nightmare.