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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. VeganMonkey

    Keratoconis Question

    Anyone with keratokonis here? Have you had surgery for it? I was told to get a cornea transplant but I researched it a bit and everywhere people with EDS say it didn't go well for them. I read a book about EDS and eye conditions and corneal collagen cross-linking was suggested as better option...
  2. VeganMonkey

    Is it correct to say ME is really EDS ?

    ME/CFS is caused by different things for different people, some have EDS, some have Lyme's, some have POTS, some have a viral infection etc. But a very large group does have EDS, so that's why it's discussed so much. Btw that thread on Not Crazy you mentioned has 62,000 hits, so it must be...
  3. VeganMonkey

    Rare Diseases Survey

    Interesting survey Really important survey for us - to get our conditions 'on the map'. It's by WA government but is for all Australians (don't think you have to be Australian to fill this in). About 40 questions on topics like delays in diagnosis, misdiagnosis, adequacy of research...
  4. VeganMonkey

    Dr sending me to geneticist

    I was diagnosed by two specialists, at two differnt times. One is a geneticist and the other a POTS/EDS specialist.
  5. VeganMonkey

    Dr sending me to geneticist

    Some people with EDS only experience the CFS side, for several years that was my main problem, the pain is on and off, it can stay away (I would still have a tiny bit but I'm so used to it it doesn't register for me) for years and come back and stay for years. That's why I thought I couldn't...
  6. VeganMonkey

    Widespread pain in arms, crepitus (cracking sound)

    I have had joint pains since I was a teen, I also have had the fatigue since I was a teen, same, my joints pop and snap when I stretch. Are you hypermobile? That might cause the pain (you could have a connective tissue disorder) I was diagnosed with EDS last year, it makes sense, with the joint...
  7. VeganMonkey

    Interesting Video on POTS

    This is very detailed video for understanding POTS and GUT issues : "If you can't connect the issues...think connective tissues"
  8. VeganMonkey

    ME/CFS, POTS and Connective Tissue Disease on Insight

    This was yesterday on TV in Australia, but you can catch up though this link: http://www.sbs.com.au/ondemand/video/315349059622/ The show also has people with other illnesses/disabilities, Natasha is the person with ME/CFS, POTS and connective tissue dissease.
  9. VeganMonkey

    Dr sending me to geneticist

    Neuropathy is, not sure about RSI, I think non-EDS people can get it too. But it's common in EDS
  10. VeganMonkey

    Dr sending me to geneticist

    It is possible, I'm the 3rd generation in my family with EDS and we all are different. We don't all have all of the symptoms. And it manifested differently in each of us. That's what made it so hard to get diagnosed, because it didn't even look like it was the same illness in the 3 of us. I am...
  11. VeganMonkey

    Is this hypermobility?

    I'm not in the UK and my specialists are not fake specialists. We have two very good CFS specialists in my city and they do test. Because most people with ME/CFS do have POTS. Not sure why they would recommend not to test it, what if people to on undiagnosed with POTS, that's awful, because it...
  12. VeganMonkey

    Is this hypermobility?

    I thought routine testing for POTS/OI was done by all ME/CFS specialists, both mine did (and that's how we got onto the track of EDS) and I was also given medication for it.
  13. VeganMonkey

    Is this hypermobility?

    I have Elher-Danlos, I had been diagnosed with CFS for a long time, but once I was diagnosed it made sense why I have POTS and I could be treated for it and avoid more injuries. So I don't think an EDS diagnosis is useless.
  14. VeganMonkey

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

    I got CFS because of EDS, I wouldn't call it ME because I certainly don't have a brain inflammation and it wasn't caused by a virus for me but by EDS. My EDS specialist said it's quite common to develop CFS from EDS, as well as getting OI from it. I have both sadly. OI would also add to the CFS...
  15. VeganMonkey

    Low Blood Volume - mine now proven by Red Cell Mass test

    It kind of makes sense when blood pressure if low that not enough oxygen gets pumped to the brain and that could maybe kill brain cells? I think that's why we get so brain fogged, not enough oxygen. With low blood volume you get low BP too? I assume it does
  16. VeganMonkey

    Low Blood Volume - mine now proven by Red Cell Mass test

    I can't find it anymore but yesterday I came across an article on low blood pressure and brain issues, I think it was about brain cells dieing. I have no idea where to find it, but has anyone come across that article by any chance?
  17. VeganMonkey

    Good Days v/s Bad Days?

    ahimsa thank you :) yes I do that too, comparing to when things were worse. Last year was the worst ever so that's now my example of how bad things can be and how much better things are now. Even if I can't compare to anything from before where I was feeling better its good to know I overcame...
  18. VeganMonkey

    Low Blood Volume - mine now proven by Red Cell Mass test

    That was my CFS/ME specialist who checked it, he checked for it because it happens to more of his patients, but I can't remember what the tests was called :(
  19. VeganMonkey

    Low Blood Volume - mine now proven by Red Cell Mass test

    I will do that. I'm with several doctors, so I will ask the first one I see. I got all the blood test and other results nicely put in a booklet for me by one of my doctors, very handy! Possibly with the small red blood cells it could be possible that makes my blood volume small too? Who knows...
  20. VeganMonkey

    Good Days v/s Bad Days?

    Yes I heard different theories from my doctors, it gets really confusing! One said that POTS/OI can be caused by a problem in the brain stem where things get regulated, so then you'd get issues with body temperature (which I have) and things like POTS/OI and heart rate issues. I'm just...
  21. VeganMonkey

    Low Blood Volume - mine now proven by Red Cell Mass test

    In my blood tests it always comes out that my red blood cells are too small. What is that about? Apparently quite common in ME/CFS according to my specialist.
  22. VeganMonkey

    Low Blood Volume - mine now proven by Red Cell Mass test

    Forbin if it's impossible to find a doctor to give blood transfusions, what about finding a donor yourself? Would they do it then? I find it disturbing that not each batch of donor blood is tested for diseases. But that's what I meant with if you can find your own donor. Always the same...
  23. VeganMonkey

    Good Days v/s Bad Days?

    Creekee, just very stupid, I can't see well so I stepped on something in the tram and slipped. At that moment I didn't feel pain, that started only the next day. I got misdiagnosed two weeks later and 3 weeks later found out it was broken. It hurt like hell. The inactivity is taking its toll...
  24. VeganMonkey

    Good Days v/s Bad Days?

    I'm doing that too, so far I do not know if it helps but that's because I am having trouble with a broken back, the pain causes a lot of energy. So I'm not my normal self, makes it hard to compare. I have been reading through ths thread...
  25. VeganMonkey

    Good Days v/s Bad Days?

    It's quite like The Spoon Theory. But for me each day I get handed out different money even if I have been resting or pacing myself. In summer I get more money, in winter nearly nothing. But then suddenly out of the blue I can have days whe there is a bit more for no reason. Or less...
  26. VeganMonkey

    Flexible Joints

    Yes many of my family members too and all sorts of EDS symptoms, but not as ill as me. We do have a history of fatigue and sickness in the family, I'm the 4th generation and the worst (and the generations are going too stop with me LOL) although my great grandmother was very bad too, but not bad...
  27. VeganMonkey

    Flexible Joints

    Oh normally I'm not stiff, I'm bendy compared to other people even when stiff, but it feels stiff to me, if that makes sense? In winter the cold makes me feel stiffer. Think it's a fibromyalgia thing. Not sure. I was wondering, the 2011 International consensus document says that many people...
  28. VeganMonkey

    Good Days v/s Bad Days?

    Does anyone here have changes in how they feel? For me it's strange it goes up and down and there is no way to predict it. I have times where I feel kind of 'good', not like a normal person of course but good that I can do more than usual. Other days I'm bedridden or don't even wake up (in...
  29. VeganMonkey

    Flexible Joints

    That picture looks familiar! I can do that too. I can do all the things from the Brighton Scale (more about that in here: http://en.wikipedia.org/wiki/Hypermobility) the only thing I don't have is where people can bend their back backwards like gymnasts can. My joints click and clunk too and...
  30. VeganMonkey

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

    pollycbr125 glad you got diagnosed :) now you know what it is at least. After many years of useless things with doctors and hospitals I'm on the right track too. First when I got my POTS diagnosis, that was really useful. We sure got to stick to our guns! Lucky my ME/CFS specialist is all...