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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. xxRinxx

    Chronic hunger

    I had that alll the time. If i ignored it I would suffer, badly. It made me just feel terrriiibblle if I ignored it for long. I did blood sugar tests and it was fine..But lo and behold, I had Insulin problems that DIDN'T show up as Blood sugar spikes. Now i am on metformin and it actually is...
  2. xxRinxx

    How many of you wear medical alert bracelets?

    I got mine from https://www.hopepaige.com/ ,(it was a halloween sale..My medical ID bracelet is skulls, haha). I'm going to make my own ID card out of an index card though, didn't want to pay extra on anything anywhere.
  3. xxRinxx

    How many of you wear medical alert bracelets?

    I have an ID card saying , Dysautonomia/POTS,and it lists my emergency contact number.I probably do need to keep a wallet card but I always forget@x@ I am never without accompaniment when I go out so I don't really worry about it. Everyone around me knows the protocol by now. Sushi has the best...
  4. xxRinxx

    Myoclonic seizure activity.

    I've only recently discovered that I have Myoclonic jerks due to a discussion on a Dysautonomia forum. For a long time I always thought I was just..twitchy. My parents thought as much too. I had been doing the Myoclonic jerks since even before I became direly sick. Does anyone else experience...
  5. xxRinxx

    Self-revolution progress

    A little while ago I blogged that I was trying to do things differently. I am happy (if not exhausted) to report that I have implemented quite a few of the things that I vowed to do. -I am back in school, and making a B in my class (and good grief that is difficult, my mind definitely works...
  6. xxRinxx

    Metformin experiences?

    I think i got used to it, I still get really nauseous but I don't feel as horrid.
  7. xxRinxx

    Metformin experiences?

    I'm just taking it as my doctor told me to..hahaha too afraid of medications to do anything else! -paranoid sort of person about prescriptions-
  8. xxRinxx

    Anyone with a 'negative' MRI brain scan had a second opinion?

    I had a 'normal' brain scan..save for they said I had blips of something odd or another, my brain is too foggy to remember what. my point is that something was peculiar but they labeled it as 'normal' anyway:/ haven't had the heart to try again.
  9. xxRinxx

    Metformin experiences?

    Without getting up and looking at my bottle(I just lack the will to pull myself up off the couch, ha, i'm sure everyone understands!) i take the 500 dose before bedtime.
  10. xxRinxx

    Comment by 'xxRinxx' in 'A certain kind of peculiar self revolution.'

    I definitely love the Chinese ideology/philosophy of personalities and horoscopes. My best friend is chinese/japanese and has a book of it all. I am very much my horoscope and element. She's the opposite of me(very grounded and slow moving) so when she's around she definitely makes me tone down...
    • xxRinxx
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  11. xxRinxx

    Metformin experiences?

    That's the whole reason i was glad to be on it @x@ The PCOS made me gain weight so I want to be on this durn medicine to lose to. So i'm just going to try and tough it out. -determined-
  12. xxRinxx

    Metformin experiences?

    Maybe I just need more time to get used to it :/ I'm still new on it so the next time I go to the doc for my check up I'll ask about the slow release..Because guh my stomach feels gross!
  13. xxRinxx

    Metformin experiences?

    I got put on metformin for my Polycystic ovarian syndrome, since the doctor was worried that there was just too much strain on my heart from the combo poly, POTS, and CFS/me so she wanted the insulin under control..I'm finding that it makes me pretty nauseous though even though I'm on a low...
  14. xxRinxx

    Comment by 'xxRinxx' in 'A certain kind of peculiar self revolution.'

    Thank you! And I know we can^^ What I've learned with hanging out with friends now that I'm ill is, make sure they understand. I've gone out with my friends in my wheelchair before and it was great fun(mainly because we're reckless with the wheels..haha). I do a lot more home-based hanging out...
    • xxRinxx
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  15. xxRinxx

    A certain kind of peculiar self revolution.

    I find myself at a strange crossroads of sorts. A choice between 'Keep doing what I'm doing ', and 'Changing my life completely'. I keep toeing into the foreign territory, but the gripping anxiety and unease has me wavering. It is hard when dealing with an illness to change yourself. It takes so...
  16. xxRinxx

    Comment by 'xxRinxx' in 'Not used to admitting defeat'

    Thank you all for the kind words, I really appreciate it! Admittedly it made me a nervous ball of jitters even posting anything akin to this..So thank you indeed! Anything Jeff's question, I live in the middle of the USA so i've seen just about everyone there is to see around here..But i've read...
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  17. xxRinxx

    Knitting Equals Pleasure, Despite ME/CFS

    I knit and crochet too! I just made a hat for my friend, and now I'm knitting a hat for myself when it gets chilly. I got myself a whole lot of yarn last week for christmas projects I have planned. I love knitting and crocheting..it makes me feel like I can accomplish something and not tire...
  18. xxRinxx

    Not used to admitting defeat

    I want to start this out by saying I was never the type of person to ask for help..I'm still not..I don't concede to help unless I'm on the verge of passing out or dire straights, and I know that's bloody stupid of me, but such is just my personality..But..Even i have to concede that six years...
  19. xxRinxx

    ME/CFS and the Magic of the Canine Factor

    My two toy aussies are everything to me<3 My boys keep me active as i can be,(I can't disappoint them by not playing fetch, their sad faces are heart breaking!). Frankly I don't think I could get through this without my dogs. They cuddle up against my legs or under my arms when...
  20. xxRinxx

    Comment by 'xxRinxx' in 'More to watch out for'

    Xylitol makes me feel yucky :/ Evidently I'm one of those few that reacts bad to it. Coconut palm sugar though works well for me.
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  21. xxRinxx

    Do you need to eat before bed?

    I go through periods of that on and off. I also get the ALWAYS feeling hungry problem, and I keep a box of protein bars on my nightstand. If I wake up in the middle of the night, I eat a bite of two of a bar, and wrap the rest off, and chase it with water, and usually thats enough to get me back...
  22. xxRinxx

    I can't picture spending the rest of my life like this

    I have that thought a lot. I try to stay positive and be that ideal 'Glowing disabled person'. The type to inspire and not let life get them down..but damn its hard! I got sick just before my 18th birthday, on the cusp of going to college and really starting to live my life..It was like getting...
  23. xxRinxx

    The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates

    Signed all and sharing on facebook too..its way too frightening!
  24. xxRinxx

    Anyone else have a spine curvature?

    Wow that symptom list is eye-opening, I'll definitely get that checked out. I have an app at my Rheumotologist soon so I will definitely take that list..I have most symptoms that line up with that, than i thought.
  25. xxRinxx

    Anyone else have a spine curvature?

    Oh yes I have Pots/OI quite badly. I use a wheelchair when I have to stand for too long because I've bottomed-out a few times and get faint easily. How would I go about getting tested or diagnosed with EDS?
  26. xxRinxx

    Anyone else have a spine curvature?

    I'm pretty sure I don't have EDS. I can bend my thumb to meet my wrist really easily, but my hip joints aren't flexible. I do have excessively easily scarred/torn skin, but I can't pull it up and it isn't stretchy. I do get very bad vertigo and ear infections, and easy bruising but i don't have...
  27. xxRinxx

    How Do You Handle Autumn?

    Cold weather is my saving grace! I also sleep with my window open in temperatures from 50f-20f! I hate hot weather, it makes me tired, achy, and my head pounds..But I definitely perk up in the cold weather. I have more energy in the fall and winter, and i can even go on short trips out and walk...
  28. xxRinxx

    Anyone else have a spine curvature?

    I developed my spine problems early on and they always caused me problems..I think i was around 10 when i first got a xray for my neck. It grew more pronounced when i was around 16, and i started to get severe problems because of it.. I find it interesting that so many report pronounced back...
  29. xxRinxx

    Anyone else have a spine curvature?

    I posted this question on a facebook group and got quite a few people saying they also have some form of neck/back curvature/problem and I found this interesting amongst ME patients. I'm just curious to get a broader 'sample' to test my hypothesis if many ME sufferers have spine issues. I have a...
  30. xxRinxx

    Comment by 'xxRinxx' in 'Tea drinkers:'

    I'm very sad at teavana..I buy all my tea pots and mugs there TwT Their chair blend is so good too. @.@
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