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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    Brain Damage?

    Byron Hyde believes that ME causes CNS dysfunction. I definitely feel as though i have brain damage. Somethings don't work at all anymore and others poorly. Mainly executive functions. I have always been too ill to have the tests (neuropsych) unfortunately.
  2. S

    In Memory of Julia Browell

    Deeply saddened by this news. Funeral today 2.30.
  3. S

    quercetin---your favorite form/brand?

    I'd be interested in a non citrus type of quercetin if anyone knows of one. Not corn based.
  4. S

    In Memory of Jodi Bassett

    Tania, you are correct in saying she will not be forgotten. I was part of the severe group. Until then I did not know anyone like me. We are hidden. Mostly i cannot even use the computer now. I had asked her to write about the adrenaline surges when one of the group died. Just before I heard the...
  5. S

    Allergy / Mast cell treatments

    I have also been prescribed creon..and probiotics.....i just can't seem to manage the creon and not sure i want to do the probiotics as they can make some more ill.
  6. S

    Allergy / Mast cell treatments

    I did not know that about glutem. i just had a big gluten and wheat challenge. It went on longer than i expected and now ihave mouth ulcers and cold sores. It was so easy to have bread again but that also meant adding back some dairy...so not sure if its the wheat the gluten or the dairy.
  7. S

    Fluctuating BP, for a Lyme friend

    Is it related to when she is upright......do you know how to do a poor man's tilt test?
  8. S

    Do Antihistamines improve your OI?

    my allergies appeared to improve as my other symptoms worsened but i think it was just that the allergies were manifesting differently
  9. S

    Allergy / Mast cell treatments

    I am interested in your use of CREON as I have been prescribed it. Have been a bit wary of taking it. Did you have many digestive symptoms and were you told to add probiotics as well?
  10. S

    Brain fog: The Research

    Totally understand this. I either don't talk or type then go into loads of typing and talking which is really just a brain dump.....it happens when i get into a wired tired state. Staying on-topic is hard but grammar and most spelling remains intact. So of course people tell me I have no...
  11. S

    Please help with SEVERE pots/dysautonomia; ANY tips appreciated

    POTS can be primary or secondary illness. Those with primary POTS can overcome it. If its a secondary disorder then it depends on whether the underlying condition can be treated. If it can't there are many symptomatic treatments, some which have been mentioned. I have 2 conditions that are...
  12. S

    KDM and sleep

    a cardio told me i was suffering from white coat hypertension - which is to say that my blood pressure was influenced by seeing him...i actually have a form of orthostatic intolerance where my HR and BP go up and sometimes (down) if yours is up when you go to dr it might not be white coat it...
  13. S

    KDM and sleep

    thats interesting....i take it and i do not get any stage 3 or 4 sleep.....I thought one of the side effects was reduced stage 3/4 sleep and it was one of the reasons i was concerned about taking it....perhaps someone else can shed light on this as i know it is frequently prescribed
  14. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Yes... i was like you. I liked doing yoga and being flexible. Pushed myself to keep doing yoga till I could not do it anymore. As for treatment for EDS - those with EDS only are usually referred to pain specialists and physios. One thing i think is important for me is treatment of the...
  15. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    fortunately i do not have the vascular type..this is the one the drs seem to know about as the first thing they do when you mention it is get your heart checked
  16. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    There is no cure...but for me it helped to understand why i had certain symptoms and use a variety of strategies for management of some symptoms. It also explained why i had so many other health problems. I found it helpful to know I had it but its also a bit sad.
  17. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Its really great that you are persevering and you are right about people no longer accepting being fobbed off. The problem i have is my level of disablity precludes me from following up many of the things I would like to s i am not able to even write to my dr at present (though i am working on...
  18. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    yes even when i asked about it i was sent off for heart test no confirmation of dx and the cardiologist make some remark about people in circuses and put me though so many useless test...it took 2 years to recover and start over .......and even now that i have the dx it means nothing to anyone...
  19. S

    Protein Shakes - warning, experience

    thanks for all the replies....the problem arose because i lost my main helper and was caught out with few supplies....I did manage to get by without having to use a shake but the reality is I cannot always get food, so i wanted a standby... i can only tolerate a certain amount of coconut milk (...
  20. S

    Protein Shakes - warning, experience

    Recently i have looked into different protein powders as i am often to ill to prepare meals. Currently i survive because i am getting some help. Every aspect of eating is difficult for me...including finding a protein powder that would suit me and then being able to buy it.
  21. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Certainly laying down is absolutely necessary for me. I am dx EDS. The dysautonomia I experience fits more with POTS than NMH. Many have EDS and some form of dysautonomia. BUT my symptoms do not go away when I am laying down. Even horizontal I find it difficult to think and get exhausted from...
  22. S

    Strattera (atomoxetine)

    whoops...i did not manage that response very well....look for italics in the quoted area
  23. S

    Strattera (atomoxetine)

    ok, so it has only helped with OI?
  24. S

    Replacement for Ensure?

    Good question. I have some here to try but i don't do dairy and rarely have soy or sucrose. I am underweight currently but its more that i sometimes have a hard getting food and preparing it, clearing up etc. I know that i usually need something solid so I am not sure it would satisfy as a meal...
  25. S

    Strattera (atomoxetine)

    are your symptoms worse after exertion? i was wondering if doing more had any payback?
  26. S

    Strattera (atomoxetine)

    DOes it work best for postural hypotension? I have postural tachycardia and wonder if it would be too stimulating for me. i get wired on the lowest dose of tramadol. And can anyone tell me the difference between strattera and ritalin. Thanks
  27. S

    Do I have POTS - (vid/pics) - where do I go from here? (very long post)

    thanks....I do vaguely recall trying diamox at one stage and i think it made me ill but that was many years ago...interestingly i have not had so much of the pressure in the head feeling lately but i might try cutting back on the fluids...I think that you are saying fluids are not good? will...
  28. S

    B12 Documentary

    very interesting, i had a B12 injection at my dr and the next day the homocysteine test....i did wonder about it at the time but I did know enough about the homosysteine test nor did the doctor .....i was wondering if i had the MTHFR gene so it looks as though that test was useless
  29. S

    Do I have POTS - (vid/pics) - where do I go from here? (very long post)

    Can you tell me more about the less fluid thing....I am fluid loading for POTS issues but i have EDS, so I am curious...sometimes I crave salt and sometimes I don't. My bp went up on florinef but my symptoms did not improve.
  30. S

    The Nutritional Composition of Red Meat

    3 pieces of scotch fillet this week.....Yum and good for me too...thanks Heaps I eat it coz i have trouble cooking and its quick and easy and does not produce cravings (unlike starchy things)