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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. Snookum96

    How to survive the Christmas holidays without meltdown/flare-up

    It comes in spurts:). Some days I can be grateful for what I do have, and others I can barely muster a desire to live. Good days and bad days, you know how it is:)
  2. Snookum96

    How to survive the Christmas holidays without meltdown/flare-up

    I will spend Christmas morning with my family. That's about it. I only do the things that are really important to me. My husbands family's Christmas I probably won't go to. Too much use of precious energy and don't think they would care that much anyways. I look at the amount of effort (and...
  3. Snookum96

    How to survive the Christmas holidays without meltdown/flare-up

    I have noise-cancelling headphones that I use , great when around toddlers.
  4. Snookum96

    Body temp 95 - too low?

    Thanks @SOC I'm seeing my GP tomorrow so may ask her about it. I've had a bunch of thyroid tests and all normal so far. I'll have her check it too maybe, her thermometer should be better quality than mine:)
  5. Snookum96

    Body temp 95 - too low?

    I have started tracking my symptoms to keep a better record and decided to take my temperature at 10 every night when I go to bed. Tonight I am at 95 F. I'm usually around 96.5 when I've measured randomly in the past so that's low even for me. I know we have abnormal temperatures compared to...
  6. Snookum96

    Has anyone had their thyroid removed?

    My mom had her thyroid removed about 10 years ago. She was otherwise relatively healthy though. Suspicious nodules that were causing her voice to change. They started her on thyroxin. Her doctor said at that time it was trial and error with the thyroid meds but my mom did well on the thyroxin...
  7. Snookum96

    "Huddersfield woman Nathalie Wright talks about the misery of living with ME"

    Great piece @harveythecat !! I think it's very representative and really well written!
  8. Snookum96

    stretching and strengthening exercise links (supine!)?

    Here is a link from Dysautonomia International. It has some exercises for people with POTS. Just keep in mind they're not designed for people with ME so the heart rate and intensity stuff wouldn't apply. I recently had a phone consult with a neurologist who specializes in autonomic disorders...
  9. Snookum96

    Finger pads are wrinkly at times

    Yes! This seems to be constant for me lately. I assumed it was dehydration but it doesn't seem to matter how much water I drink. It won't go away.
  10. Snookum96

    MRI with contrast

    So it turned out that I didn't get contrast. I was sure he had said he was ordering it but my brain doesn't work that well. @halcyon no not yet. It is moving painfully slow. He is great but requires an incredible amount of patience to work with. Interesting it was in the pons. I'll ask him...
  11. Snookum96

    MRI with contrast

    I'm having another brain and cervical MRI tonight, with contrast...again. I still don't know why I reacted the way I did last time. I'll just try not to freak out unless I really can't breathe. This one is being done in Canada so at least I'll be in a hospital if something goes wrong.
  12. Snookum96

    DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

    Is that hh:mm:ss? I can't figure out if you were standing for just over a minute or just over an hour.
  13. Snookum96

    Poll: Viral vs. Non-Viral Onset and Contagious Relationship

    I voted female, non viral with no ill family members. Lately I've been wondering if I've been misdiagnosed though. My symptoms seem so random and my memory sucks. I'm overwhelmed just trying to figure out what my symptoms are at this point. Would be interesting to see if those with non-viral...
  14. Snookum96

    What do you do when a flair comes on to minimize it's impact

    Nothing helps me but rest and sleep.
  15. Snookum96

    Vivonex Elemental Diet Experiences?

    Ugh I didn't realize how much sugar was in it. I try to avoid sugar as I don't tolerate it well. Homemade formula might be a better option for me.
  16. Snookum96

    Vivonex Elemental Diet Experiences?

    I've seen that. I don't feel like I'm knowledgeable enough to play with a recipe that way. That's why I was thinking Vivonex, because I'm worried about making sure I get everything I need. Is it the corn products you are trying to avoid?
  17. Snookum96

    Heart rate profile

    I don't think my lightheaded news is related to my heart rate either. Possibly related to dehydration or electrolyte imbalance? At this point there's so much wrong I don't even know how to go about evaluating things.
  18. Snookum96

    Vivonex Elemental Diet Experiences?

    @Daffodil @acer2000 Did you guys try using this? If so, what was your experience?
  19. Snookum96

    Heart rate profile

    I'm the same way. Supine I'm about 70, seated about 90-100. Standing I'm 125-130 and moving about the house from 130-150. I do have POTS, but I wouldn't be surprised if there's a bit of deconditioning in there as well as been a while since I've been able to go for walks or anything.
  20. Snookum96

    PACE Trial follow-up: Here's the table looking at the effects of having CBT or GET after 52 weeks

    Makes sense. I would think insignificant data would be more of a note at the end of the study or a brief sentence, rather than the part that makes headlines.
  21. Snookum96

    PACE Trial follow-up: Here's the table looking at the effects of having CBT or GET after 52 weeks

    That's ridiculous. They know that most people don't really understand what statistically significant means? What kind of idiot publishes stats that aren't statistically significant. Douchebags.
  22. Snookum96

    PACE Trial follow-up: Here's the table looking at the effects of having CBT or GET after 52 weeks

    I don't remember a lot from stats courses but aren't the p-values for GET kinda high? I remember the minimum we would accept was 0.05 I think.
  23. Snookum96

    Childhood illness & ME/CFS ?

    I had roseola at 11 months that caused seizures but I think that's it. I had chickenpox as a kid but nothing out of the ordinary.
  24. Snookum96

    Sinusitis or cfs.

    I have chronic sinusitis. Sinus congestion was one of the first symptoms I noticed. I didn't usually have issues but I was suddenly stuffy all the time.
  25. Snookum96

    Questions - Diabetes Insipidus, Dehydration, DDAVP, Sodium, Water - Help

    Hi there, I'm sorry you are having such a hard time with your doctor. I'm not knowledgeable enough to answer your questions but your post caught my eye because of your description of crampy and bubbly legs. I get the same thing, but have never heard anyone else explain it as bubbles before...
  26. Snookum96

    Constant spaced out feeling

    Not that I know of. I haven't been tested yet because it took me so long to find a doctor that believed my symptoms are physical. I'm working with a diagnostician now and that's in the next round of tests I believe.