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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. river

    Should I fix my sleep pattern

    To make a long story short, I feel a lot better when I follow what many would consider an unhealthy sleep pattern. I have read many times that the hours before midnight are the most restful But when I try to go to bed at 10pm I wake up at 5am shaking and feeling spaced out and anxious and...
  2. river

    Your typical day

    Well, there's something there I would never get fed up with: interacting with kids/family/partner/friends Even if I was totally healthy, that would be the most important thing in life to me. And as long as I can interact with people I love, everyday is a different day even all the other routines...
  3. river

    What cardio is tolerable?

    I thought that because when I'm not bed bound and I'm not waiting for PEM to subside, it takes like 30 minutes of walking (slow paced) before my heart pulse increases. So compared to whatever other exercises where my pulse starts increasing after 50 seconds and I need to rest a lot in between...
  4. river

    Your typical day

    For those of you who don't work and spend most of your time inside or at bed and never go out or just go out from time to time, what's a typical day of yours like? What do you do when you wake up? I feel like the first half of the day I'm just idle and things start to get going later in...
  5. river

    What cardio is tolerable?

    walking is well tolerated by PWC, isn't it?
  6. river

    What cardio is tolerable?

    Is walking, either outside or inside, considered cardio?
  7. river

    What cardio is tolerable?

    What cardio is tolerated? I'm asking out of curiosity and also because I have read a lot on the topic, in the forum too, but didn't understand what the bottom line was. I know that a typical symptoms of CFS is cardio intolerance but I also know that when one feels a bit better, some cardio...
  8. river

    Wheelchair for people with CFS

    Indeed I'm feeling way better. The first days I had terrible arm and back pain but now it's gone and I need to sleep less, feel stronger in the upper body and I have less brain fog.
  9. river

    Wheelchair for people with CFS

    Since I have been bed bound for a few months so far because my legs collapse under the weight of my upper weight and they're always numb and the muscles are always contracted and in pain, the doctor and the social services rented gave me a wheelchair to move around. Now the problem is that my...
  10. river

    Morning Anxiety

    Do you know why anxiety strikes me in the morning? I don't feel particularly anxious after noon unless I'm suffering from PEM but for some reason I feel anxious in the morning around 7 to 10 am But it's weird because: If I fall asleep around 1 am and wake up at 8 am then I have morning...
  11. river

    Yoga

    In your experience, what yoga poses someone with CFS and POTS should be wary of or avoid enterily?
  12. river

    The Happiness Project by Gretchen Rubin of The Happiness Project

    Great reading, thanks! May I suggest this article as well? http://www.threenewleaves.com/happy-memories/
  13. river

    Do anger and disappointment cause PEM?

    Is it possible for anger or rage or fear or disappointmet to cause the same kind of PEM that excessive physical activity causes? I have had few things making me angry and full of rage (my computer crashes) scaring me (thieves in the building) and disappointed me (people making excuses instead...
  14. river

    new empowher article: "Chronic Fatigue Syndrome: 10 Ways To Make Thanksgiving Easier"

    This article is great, one of the best things I've read in a long time. In few words it describes CFS perfectly (even to those that still don't understand it) while providing sound advice to cope with holidays. Great job!
  15. river

    The Anxiety thread

    Some of the anxiety might be caused by hypoglycemia and oversleeping. Addressing those issues might help to decrease anxiety, at least the ones caused by those. I wrote a post here about the way over-dreaming and over-sleeping causes anxiety and depression: Anyone else here sleeping long...
  16. river

    Hypoglycemia: what helped the most

    I got a lot of useful advices on treating hypoglycemia But after many days of testing with the glucometer, I've found out that I don't need to be as strict with my diet if I'm as strict as possible with just one rule. That rule is to avoid liquid food as much as possible. I read somewhere...
  17. river

    Anyone else here sleeping long periods of time, 11 hours+?

    Experimenting with myself, I have learned that if I sleep more than 8 hours in a row I wake up more anxious and depressed and tired. On the other hand the few times I have slept only 4-5 hours I woke up rested and without anxiety but was more tired in the evening. I then realized that if instead...
  18. river

    Panic Attack On Waking

    Even when I don't eat refined sugars I have hypoglycemia, in fact I have it on a low-carb diet too and I haven't yet found a way to fully control it. Of course my fasting blood sugar is normal, it is abnormal only 1 or 2 hours after eating. And a major symptoms of hypoglycemia is indeed waking...
  19. river

    Hypoglycemia again

    I think my reactive hypoglycemia is very unpredictable and doesn't always respond to food choices. I actually feel worse when I try to eat an healthy diet of unrefined foods than when I eat whatever I want. But there are days that eating whatever thing will trigger post-prandial hypoglycemia...
  20. river

    Toxic Mother

    Part of the problem is that CFS is an idiotic name and now people who are genuinely tired because of overdoing (but that recover quickly with some extra sleep and don't have all the cognitive and physiological symptoms associated with CFS) claim they have CFS too. People also are starting to...
  21. river

    My nutrition

    I seem to suffer from some kind of acetone or acidosis that causes a sharp vinegary acid sensation and taste in my mouth. No doctor have figured out yet what it could be but it seems to be triggered by an excessive carbohydrate consumption. The weird thing is that this acid-mouth symptom is...
  22. river

    Horrible report from psych for victims services application - "somatic symptoms"

    You need to file a complaint as soon as possible so that they can't claim that incident happened too long ago to do something about it. She isn't professionally entitled to make a diagnosis like that, without visiting you and without reading your medical history. You need to ask for some kind of...
  23. river

    seeking advice on gentle strength training

    I'm not feeling pain or a burn while I do the exercises, is that a good sign? I only started feeling some pain and burning sensation the next day. Also, now I understand why using the hairdryer or picking up objects in the shelt from the bed is so painful to me. Anytime I put my arms above my...
  24. river

    Yoga

    Can you please tell me more about doing Yoga in a CFS-friendly way and the right session length and poses to avoid PEM? I tried Yoga in the past but it tired me excessively, expecially poses like the downward dog, tree or cartwheel. I have POTS, OI and NMH but would love to find a way to...
  25. river

    seeking advice on gentle strength training

    Good advice, I'm not alone though... my father is there to spot me as I wouldn't even venture leaving the bedroom in this moment if there wasn't someone to keep an eye on me I googled the third world squat. That's interesting and even looks like something that could soothe POTS But should I...
  26. river

    Living 5 minutes by 5 minutes

    I've been bedridden for three weeks A combination of PEM, POTs, plus inflamation, muscular fatigue, blood sugar all over the place and bad case of impaired thermoregulation. I'm slowly recovering but suddenly, instead of doing nothing the whole day, enduring boredome and wasting time, I...
  27. river

    seeking advice on gentle strength training

    I'm still bedridden because I can't walk without feeling lightheaded and falling or without feeling the legs collapsing under the weight of my body. But I can stand upright with some support and even leaven the bedroom if I sit on a chair. I have started exercizing with weights. Weights are a...
  28. river

    Bedridden exercises

    I'm unable to leave my bedroom right now Got a major PEM, flue-like crisis and paralysis episode and have been bedridden for two weeks so far. Right now, if I try to walk, my legs fall under the weight of my upper body. But I wonder if there's any kind of exercise I can do in bed, in order...
  29. river

    Healthy Friendships with the Healthy

    Well, these sounds like plain bad people and the kind that would drag you into toxic relationships. Dishonesty is terrible in my opinion, expecially if you're playing the feelings of someone who is more vulnerable because of his/her health condition. You deserve better but don't think for a...
  30. river

    Healthy Friendships with the Healthy

    But they might actually be very bad at taking the initiative. Since I'm often in bed and often can't leave the bed, I give my friends the key of my house so they can come whenever they want. Although I have repeteadly told to them that I'm actually happen if they come often using my keys, that I...