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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. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Honestly I wish I knew what it looked like; ended up looking at pictures of my old dorm but unfortunately I don't see them outside anymore. I think their recline was a bit similar to what you posted, except it has a bit of a mellower, slightly flatter angle. I think I might experimentally try...
  2. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Alright, gonna do a small-ish update--I'll respond to others when I think I have more information. In general I realize that I think my issues might not necessarily pool from one secret big issue per se. I have huge suspicions about the nausea and near fainting moments, however, and this being...
  3. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Well, unfortunately I'll have to verify that I successfully rekindled my insurance; I was told that a new card was sent but it hasn't gotten here after 2 weeks sooo it's up in the air. After that I'd have to go through the gauntlet of tests and seeing doctors and referrals again which is a bit...
  4. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Kind of reminds me of the concept of eustress...not quite it, but effectively a shock or abnormal experience that ends up realligning our bodies...it's all so frustrating that we can't really quite pin what it is down. Maybe sometime I'll consider sleeping on the ground...just doing something...
  5. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Unfortunately no; it was back at my dorm. All I know is that it was on a slight incline, that I was slightly lying down and looked bizarre and not like the gravity chairs on google; I think it was suspended though not a hammock. Wish I remembered.
  6. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Oof. Wasn't sure what you meant then found https://me-pedia.org/wiki/International_Consensus_Criteria, and I confidently (which is actually rare, even for "catch all" conditions) say I do fit almost all of the criteria and that on my few good times I don't at all. Alongside the other ones which...
  7. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Going to probably leave this up as a thread to return to...afraid no one will respond with ideas, but I will compile some more notes. -it would be difficult for me to seek further treatment as my insurance is questionable -I did a very stupid oopsie; a while ago I was actually referred to a...
  8. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Piggybacking off https://www.mechanicalbasis.org/ + https://forums.phoenixrising.me/threads/have-you-ruled-out-chiari-or-craniocervical-instability-cci-as-a-cause-of-your-cfs.56908/#post-945253 , a story of a man that suffered CFS alongside POTS...I'm inspired to sort out my body, especially...
  9. W

    Steak made me feel horrible...but what weirded me out is that the symptoms reminded me of how awful B-vitamins make me feel. What?

    Ok don't have much time to respond! So, I think that could be possible and I could test it out. Fasting is one thing, fatty foods and low carbs is another--I'll see how keto treats me. I wanted to try out the enzymes--is...
  10. W

    Steak made me feel horrible...but what weirded me out is that the symptoms reminded me of how awful B-vitamins make me feel. What?

    Hm...actually...someone mentioned histamine issues being related to those issues sometime. My allergist wrote it off as pseudoscience jargon. But, I can say for a fact that zyrtec and benadyrl despite the "drowsy" effect has always helped me feel quite a bit better and there is a chance that I...
  11. W

    Steak made me feel horrible...but what weirded me out is that the symptoms reminded me of how awful B-vitamins make me feel. What?

    Ok so...it was rather peculiar. A while back I tried Jarrow's B vitamins twice (B right) and...I had a terrible reaction to them. The niacin flush sure, but it was like my limbs started burning up but there was this internal coldness and weakness and numbness--I felt limp, weak, like my body was...
  12. W

    Creatine helped, maybe. But...

    Ok, thanks for the feedback guys! It's encouraging to know that there's some threads of meaning to be found here. Yesterday I ended up going to the doctor for more simple things and, like I had suspected, seems like my nose breathing is severely compromised--and I will see an ENT soon. I don't...
  13. W

    Creatine helped, maybe. But...

    Ok so...first of all, I know, creatine shouldn't give you energy and I'm betting that people will automatically assume it was placebo. But, it wasn't. Yup. It isn't a placebo. Or it could be a coincidence. We'll see. I was unaware that I was taking it at all but mysteriously on a few of the...
  14. W

    Always feeling sick, suffocating (numbness/weakness), and cold after exercise or even doing anything

    Ok, so update. I looked into OI and considering everything I ended up starting off with something odd..putting 1/4 tsp of sea salt and no-salt (potassium) in with creatine in my coffee for the past days. And...tbh, the days I have gone out (all day) or hung at home...I felt much stronger...
  15. W

    Always feeling sick, suffocating (numbness/weakness), and cold after exercise or even doing anything

    Yup, sounds pretty familiar. Hm.... What weirded me out was looking at this site's page on it and finding this: Since showering often increases symptoms consider taking your shower at night rather than in the morning (and stay away from hot showers.) And I was shocked because yup that's been...
  16. W

    Always feeling sick, suffocating (numbness/weakness), and cold after exercise or even doing anything

    oooh...well, looked it up, the symptoms aren't inaccurate but the condition is..very fringe. But hey, might as well at least do little things like stop sleeping with my phone right next to me (bad habit regardless). If this somehow is a thing then that'd prob make SO much more sense how going...
  17. W

    Always feeling sick, suffocating (numbness/weakness), and cold after exercise or even doing anything

    You mean brittle bone disease? No but I doubt I'd have it. bone fracture, bluish tinge of the white of the eye, bone tissue formation, bow legs, bruising, callus, enlarged head, hearing loss, physical deformity, scoliosis, short stature, or stiffness Yeah I only got like...bruising - let's...
  18. W

    Always feeling sick, suffocating (numbness/weakness), and cold after exercise or even doing anything

    So...I think a big part of my symptoms is embodied by a sense of odd sickliness and losing touch with a (very stressed out feeling) body. I could go outside and start feeling numb and like my insides are melting after awhile. Really a wired red light feel. Sun? Nope, doesn't make me feel much...
  19. W

    Looking very aged and gaunt when CFS symptoms flare up+bad skin...do other people experience this?

    I see...I heard about progesterone. Not sure if I should get that tested. >_< Right now I have pretty severe acne, look yellow and orange but somehow still like I need sun, dry/lizardry skin. Not even sure if I should continue skincare or whether or not it'd just aggravate my skin. But...hmm...
  20. W

    Looking very aged and gaunt when CFS symptoms flare up+bad skin...do other people experience this?

    Hm...I thought about thyroid hormone and I got tested, but found nothing despite being tested twice. I mean, other family members had thyroid issues and my mom got it very young and tbh...it was really quite weird, I lost about half my hair in three years but my diet is SO much better than how...
  21. W

    Looking very aged and gaunt when CFS symptoms flare up+bad skin...do other people experience this?

    I ended up actually getting the Jarrow's formula saccharomyces boulardii + mos yesterday which will also kill off bugs; idk, I just found it interesting and grabbed it for 18$ which wasn't that insane. Right now I'm feeling pretty decent and my acid reflex hasn't flared up, nor has my chest...
  22. W

    Looking very aged and gaunt when CFS symptoms flare up+bad skin...do other people experience this?

    Aww man...facial fat?? Wow. I remember going on a plastic surgery forum and someone remarking "Where did all your facial fat go?" The sad fact is...I am actually a bit chubby. Huge belly, lots of unhealthy waist fat. I should drop to 135 but I realize that I'm probably ruined, anyway, and that...
  23. W

    Looking very aged and gaunt when CFS symptoms flare up+bad skin...do other people experience this?

    I know, I know. Petty subject but when you've been bullied about your looks for years, or even disparaged by your own family, you end up growing into a somewhat vain woman. This is something I got curious about...is it really true that how you feel is on the outside? I've gotten some pretty...
  24. W

    NAC makes me feel alive--just found that out. Why is this?

    Thanks for the feedback Wishful! I wish there wasn't so many ratios to deal with in nutrition and etc. I'm probably gonna take my carnitine on a more consistent basis. On/off I have been taking it. I guess I can try the zinc; I'd assume it would have a taste though.
  25. W

    NAC makes me feel alive--just found that out. Why is this?

    Aw, SOS, I think I need help. I don't necessarily want to make another thread unless I don't get any feedback here. Unfortunately things have gone south again now that I've been out twice this week. Pretty much within an hour in I feel like downright death, the area around my eyes darkens, I...
  26. W

    NAC makes me feel alive--just found that out. Why is this?

    Okay, update...I got a newsflash, NAC theory isn't foolproof. Found out through an unintentioned test... I went to school. This took an hour car ride. Car rides have always made me feel bad, but rather than only nauseous, they make me feel sick and fatigued for the rest of the day even when...
  27. W

    NAC makes me feel alive--just found that out. Why is this?

    What is the mechanics that leads CFS people to have low glutathione? I hope other people here do try NAC tbh. I just had 600mg too and it works, and I can't imagine how 1800 mg might work.
  28. W

    NAC makes me feel alive--just found that out. Why is this?

    Hi guys. For the longest time I didn't figure out what was causing a few of my fleeting good times..and yeah there's plenty of factors. Horrible face pressure/fatigue (eyes always drooped, extra eyelid forms on left side when I feel bad), bodily weakness and even some neuropathy, anxiety...
  29. W

    Easily out of breath

    This thread is very eerie. I just registered after being reluctant to join (I wanted to believe I didn't have a problem) because it's exactly my issue. I'm 24. *Yawning pretty much all the time, can never get enough breath *Spirometry score of 250-300 over a few months. Apparently this is my...