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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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Search results

  1. W

    Food you find easiest to eat

    What food, excluding meat, do you find easiest to eat. I was already slim before becoming ill but now I have lost even more weight over these 5 years or so. The problem is finding foods I can actually eat, I feel sick always. Very sick sometimes. Fore the importance is calories but the odd...
  2. W

    Waking up at night feeling extremely unwell

    thank you for all your replies. it is odd for me because sometimes it seems to be caused by doingong things too stressful the day before, one of worst wprst culprits is going on my iPad. Another is if i stand too long, pqrticulary before bed, it can be a very short amount of time...
  3. W

    Waking up at night feeling extremely unwell

    I haven't looked into a sleep study, I don't even know if you can get them in the NHS (I'm in the UK). If I had a deviated septum would I be able to physically see that I did? And similarly with the sleep apnea, is there anyway to know if I actually suffer from that before going to a doctor. I...
  4. W

    Waking up at night feeling extremely unwell

    Thank you for your reply. I haven't but I haven't been checked for anything to do with my nose or throat even thought I have felt I should for quite a little while. Like I said I am pretty much housebound so it would require me to get taken by parents and feel more unwell because of it, but I...
  5. W

    Waking up at night feeling extremely unwell

    I wasn't sure where to post this as I don't know what's causing it but any help is welcome. I am posting now after having been in/still slightly am in, one of these 'episodes' and really want to get to the bottom of it. I used to think it was my stomach/GI system causing me these issues but is...
  6. W

    Constant Motion Sickness?

    Thank you for all the replies. I plan on seeing someone in regards to ENT and eyes also, but I am pretty much housebound so I hope they will come to me some how.
  7. W

    Constant Motion Sickness?

    Does anyone else suffer from this or have any ideas? I wonder I am getting constantly motion sick, not dizzy, but the nausea side of symptoms. It is mainly set off by going on laptop, iPad or phone, I use my wheelchair indoors so when I wheel around on it but this is less so I think, both...
  8. W

    Possible pancreas problems?

    I wasn't sure where to put this. I have for a couple of years, more chronically recently, a pain below my left ribcage. I assumed it was my stomach except one time I thought it could be spleen but it wasn't. Today my dad had some medical image of a the human body, or part of it, it looked...
  9. W

    Has anyone tried not talking about your illness over a long period and seeing if it helped?

    Hello, I do not mean this in a way others might (ie. it's in your head if you stop talking about it you will forget it's there). But just sometimes for me when I discuss it with family members sometimes it is positive and sometimes it really leaves me down. It is constantly on my mind but...
  10. W

    seem to crash each day around midday and i dont know why? plus symptoms etc for no reasons?

    From the time I started this thread to now I have noticed a reasonable improvement. One thing that seems to have really really helped is using a wheelchair. I know this is not something most people would want, and I only use it at home as I pretty much housebound, and my family were worried it...
  11. W

    Spleen pain rather than what I have presumed for ages was stomach?

    Mine seems to be a lot worse if I am stressed or stay up too late, is this possible?
  12. W

    Spleen pain rather than what I have presumed for ages was stomach?

    In the general area of my spleen or more the gallbladder area? With my spleen it is pretty much a constant discomfort, same for the rest of the general area spreading across just below my ribcage it is in a state of discomfort, especially if I stand or walk (I am now in a wheelchair) and it...
  13. W

    Spleen pain rather than what I have presumed for ages was stomach?

    Hopefully I will be seeing the doctor about, I don't know when though, it's tough for me to go out at all.
  14. W

    Spleen pain rather than what I have presumed for ages was stomach?

    I think mine is mainly dull ache but I have noticed it gets worse straight away pretty much when I am particularly stressed, does anyway else experience this? I think all of my lymph node areas are tender but this area seems to be in constant discomfort nowadays.
  15. W

    Spleen pain rather than what I have presumed for ages was stomach?

    No I haven't, is this a relatively easy thing to do or does it require something invasive or generally difficult? Gallbladder issues have been suggested to me before but I never seem to get pain in gallbladder area, (although maybe I do and like this I was mixing it up with gastrointestinal...
  16. W

    Spleen pain rather than what I have presumed for ages was stomach?

    I practically always have swollen glands (although for a while I almost always have this discomfort) and what you describe does sound pretty similar to me. A second thing I experience which originally made me think it was my stomach was on the day or so leading to a bad day (or a bad night in...
  17. W

    Spleen pain rather than what I have presumed for ages was stomach?

    I might be way off the mark in terms of what causes a fatty liver but I am only 18 and up until I was ill was very active and had a healthy diet and lifestyle as far as I know, and even since I have become ill I have actually lost weight even though I was very slim before, could I still have a...
  18. W

    Spleen pain rather than what I have presumed for ages was stomach?

    And did that come about because of ME? Or was it a problem before, how does the liver get fatty and and the spleen contain calcified granulomas? I hope you have managed to get some treatment and are feeling improved.
  19. W

    Spleen pain rather than what I have presumed for ages was stomach?

    Hello, I wasn't quite sure where to post this so I posted here. I have posted a few times about stomach problems which I certainly do have, or general gastrointestinal issues, nausea etc. But I do seem to have this constant dull ache on my left side of my lower ribcage and as I have lots of...
  20. W

    Poll: How many X-Rays have you had?

    I didn't quite realise the vast difference between difference between different types of x-rays so I can see now the question is a bit lacking in detail and won't really give a clear answer as one x-ray might be more powerful than five smaller scale ones.
  21. W

    Poll: How many X-Rays have you had?

    Hello, I was just thinking today about that when I was younger (I'm 18) I had quite a few x-rays, for my knees, elbow a few times and wrist. And I was just wondering if other people with ME had had many x-rays, it might be nothing but I just thought I would ask. I have had ME for over 4 years...
  22. W

    Feel Very Bad After Resting, Getting Up from Sitting plus Eating

    Just re read your post and I can see that different cases of OI are different so sitting position, how long to stand etc differ case by case. Either way I will try this being a wheelchair around the house to little getting up and walking around and I hope to post if there has been any improvement.
  23. W

    Feel Very Bad After Resting, Getting Up from Sitting plus Eating

    Thanks for all this information, we are going to rent for a week a self propelling wheelchair just so I can find it easier around the house because at the moment I have to get up a lot to get food because I eat very little and often and just even going to the bathroom or room to room etc, it...
  24. W

    Feel Very Bad After Resting, Getting Up from Sitting plus Eating

    Thanks for all the information, it looks very useful and I will try and delve into it a bit deeper. Is it worth me getting one of the finger things or heart rate/oxygen in blood or does that not measure anything linked with this? Also you mentioned low blood volume, do you know how I would get...
  25. W

    Feel Very Bad After Resting, Getting Up from Sitting plus Eating

    Also I should add when I wake up n morning I don't get straight out of bed, I probably stay for up to 45 minutes and the other day I did get up quickly after waking I did feel more hazy etc.
  26. W

    Feel Very Bad After Resting, Getting Up from Sitting plus Eating

    Hello, I realise now I can feel a LOT worse when I have been lying down and especially feel it after standing up, same for sitting then getting up and sometimes also with eating (stomach feels a lot worse afterwards too, for all these things), I feel much more tired, feel more sick and just...
  27. W

    How to be able to Read/Do Cognitive things longer

    I think that taking breaks for a little time but often might help as I do sometimes try and push beyond how much I feel I can do and it just makes things worse for the rest of the day and sometimes more so I just need to be patience, I will try it out, also lying down could be good too as I am...
  28. W

    How to be able to Read/Do Cognitive things longer

    Hello, I have a big problem with concentration and feeling really unwell after reading for too long, is there anything I can do to not find it so difficult and let it affect me so much. When I do too much I feel very out of it and it can make me feel really sick and crash. I don't read too...
  29. W

    Mold in our house, could have affected my ME?

    Brother has said that mold has been gone for a few months, could it still be a problem though?
  30. W

    Mold in our house, could have affected my ME?

    Hello, Even though I have known for a while I haven't really thought of mentioning on here. In my brothers room next to mine he has mold behind the walls I think it is because the chimney is above his room and the water came in. It has been obvious over time when it has started to darken the...