• 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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  1. T

    Does anyone know a specialist in Poland for ME/CFS

    Hi, One of my online overseas friends has a very unwell mother-in-law and I think by the sounds of it she may have ME/CFS (her doctors havent been able to work out what is wrong with her). I dont think they've ever heard of this before. Does anyone know if Poland has some ME/CFS...
  2. T

    Feeling weak and shaky when overdone things

    Feeling shaky is one of the signs that Im overdoing things. When I'm like that I got to be careful as my legs can just suddenly give way on me.
  3. T

    In memory of anonymous victims of ME

    good idea. I have someone who was not a friend as such but someone who used to live in my neighbour hood. This guy I would guess would of been in his early 50s?? (he didn't look all that old) when he finally died of "organ failure". His nick name was Radar, he was a friend of my father. Radar...
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    Comment by 'taniaaust1' in 'Autism: shutdowns, meltdowns, misdiagnosis, gaslighting'

    " Medical Harm Some people have been actively harmed by medical professionals due to their misdiagnosis, particularly from a misdiagnosis of borderline personality disorder. " Yes, that is exactly has happened to me and once you have a wrong mental health diagnoses put on your file, its near...
  5. T

    At a loss now

    Standing up can be hard for many with ME/CFS and just the exertion from doing so can put the heart rate up. I do think though from things you have said that you probably should be tested for POTS (postural orthostatic tachycardia syndrome). It is also possible to do what is sometimes called the...
  6. T

    What does elevated bilirubin indicate?

    I just found something which could be helpful to you. looking back with that abnormality and the fact I also had abnormal anti-nuclear antibody too but with a different doctor (non of the doctors worked together with things) but that doctor ignored the abnormal ANA as a follow up testing of...
  7. T

    What does elevated bilirubin indicate?

    I had that abnormality on my blood tests back in my early years of ME/CFS.. due to that they thought for a bit that I had hepatitis (but that turned out not to be the case. Im sure it was just caused by the ME/CFS)
  8. T

    At a loss now

    if you think you could get your mother to sit down with you and watch something.. there is a couple of good ME/CFS documentaries out there.. eg Voices in the Shadows could help. Along with a good symptom list of ME/CFS symptoms eg http://wwcoco.com/cfids/bernesx.html
  9. T

    How to objectify brain fog / cognitive dysfunction?

    I was in a ME/CFS study which do lot of neuropsych testing done (It was done as part of quite intensive ME/CFS study of all different things eg MRIs with contrast, eye scans and other things), when they published I dont think they published the stuff on the neuro testing results or not much on...
  10. T

    POTS and bronchitis?

    POTS can be started by viruses, it is a known trigger for someone developing POTS in the first place. I suppose seeing we already have ME/CFS in which POTS is common, we then would be more suspect able to a virus possibly giving us POTS. sorry to hear that you are getting this new issue as this...
  11. T

    Refund for a test?

    sure she has not diagnosed you with IBS.. IBS is common in ME so I can understand her taking this approach if that is the case. She may of diagnosed you with having it but not told you she has.
  12. T

    Refund for a test?

    I suppose if you got the results.. you already got an actual product and it's one which can not be returned. Usually when someone buys something and gets a refund.. they are able to return it. It would be like someone dying in the family and burying them in a coffin and then saying you do not...
  13. T

    Comment by 'taniaaust1' in 'Getting Better'

    "Had a consult with my PCP internist today to troubleshoot some hypertension due to taking nicotine as an apoptosis stimulator. I take a lot of nicotine during the treatment. The equivalent of 2 packs of cigs per day via vape " that all sounds hugely unhealthy. I hope you are aware of the vape...
  14. T

    Article Never Enough Hours in a Day With ME/CFS

    Good article (though I didn't manage to get through it all). I'm having that problem currently with my support agency cause they moved my meal support time forward to cater for another person which means Im now asleep still trying to recover from the support I have from them earlier in the...
  15. T

    Comment by 'taniaaust1' in 'Sunday school, frustration, autism, and thank God for LEGO.'

    that's awful and I would of left too if someone was doing that. (i'm curious what bible quotes they were thinking of when they treated you like this. Does the bible really say that people should never feel upset or frustrated). " seek support for less than happy happenings " Well they failed...
  16. T

    Why is the forum not separated by subtype/subgroup?

    Uknmy, I think that would be way too hard and akward to do, lots of people dont even know their subgroup when they come here and how would one distinguish the subgroups. There seems to be quite a few different ones beyond just the CFS or ME thing eg the EDS/POTS/mast cell disorder combo...
  17. T

    Why is the forum not separated by subtype/subgroup?

    Trying to subgroup according to how a person got sick (though this seems to be done with Gulf war syndrome with the vetarans which actually presents just like CFS) would be so hard as with lots of us it could of been many different things and what is it takes a multiple triggers to occur. eg...
  18. T

    Why is the forum not separated by subtype/subgroup?

    I think you missed the point, ones who divide themselves from CFS and say they have ME are not doing it just cause of that stupid name the CDC gave ME during the Tahoe outbreak but cause CFS usually does have a very different illness presentation to ME and this patient group often has different...
  19. T

    Weird recent neck event seemed to push a reset button

    I second what gbells has said.. find yourself a physio who is also certified in the orthopedic side of things too. I've personally found normal physios useless and have only had help with things when my physio has had the extra ortho qualifications or other special qualifications too.
  20. T

    super depressed about MD's and Montoya news

    sending you a ***hug*** if it helps. I fully agree that the doctor situation for us really sucks. I had exactly the same issue when trying to find doctors and even the waiting lists were full with doctors not taking on new people. I've just the past couple of weeks found a GP again.
  21. T

    Mum guilt. Struggling

    I suggest you take her to a doctor, what if she does have depression.... this should not be ignored and she should be evaluated by a GP. It probably took a lot for her to broach your husband and tell him how she has been feeling. With this being said, I'd like to say that depression is caused...
  22. T

    Considering brain surgery...any feedback?

    New research takes years to come out and if you issue is going to get worst without the surgery, I'd be certainly thinking about it. The mother of a friend of mine had a seizure which has left her completely unable to look after herself at all as the seizure damaged her brain.. it actually...
  23. T

    Bizarre Breathing Sensation

    Maybe try to distract yourself from the sensation rather then focusing on it could be a help (focusing on any 'feeling" at all can amplify sensations). One distraction technique is to try to find as many things in the room you are in starting with a certain letter. best luck
  24. T

    Anyone care to discuss Bladder Issues?

    Last week I had an incident when I suddenly had a bout of urgency which came of so strongly and quickly that started to pee myself before I got to the toilet (I could even hardly make the next room). I know what had caused that for me.. that was I'd had half a cup of weak coffee. (Im very...
  25. T

    Bizarre Breathing Sensation

    You don't even need to think to breathe, it's a subconscious act (otherwise you would die in your sleep) so I think you are over worrying about this. It sounds like anxiety causing you to think you are going to stop breathing.
  26. T

    Be Safe

    it makes one wonder how many people have drowned due to ME/CFS.
  27. T

    Good jobs for individuals with CFS/ME?

    I was working when extremely ill at one point as I got a care job in which the hardest thing was driving to it. I had an overnight job where I had to sleep in a room nearby to a paraplegic guy, get and give him a drink before he went to bed (hold the cup so he could use his straw), feed his...
  28. T

    If you were recovered tomorrow, what would you do

    I actually do not know what I'd do, I've been ill have long to even know that. I'd have to reevaluate my whole life and see if I still wanted to go back to the things I was doing before I got ill. I got ill right in the middle of my studies for a profession I'd planned to do, so they probably...
  29. T

    Be Safe

    I had a very bad beach experience due to ME/CFS ages ago and almost drowned due to it. It was the very last time I went to surf. I got tired and could not back to shore before I lost all my energy, I ended up collapsing in the shallows and almost did not make it there. I ended up swallowing a...
  30. T

    Big birthday approaching.

    Unfortunately yes that is all quite normal to have issues like that. I hope things improve for you. I missed doing anything at all for my 40th birthday so know how you feel.