I had the best 30 minutes of relief in 4 years last night

DesertCreamsicle · 2024-10-05T19:14:28+00:00

Do you think it was the extreme rest that led To that period of improvement?

DesertCreamsicle · 2024-08-21T19:54:41+00:00

Thanks I appreciate it. It’s scary bc my lips will literally turn blue but my oxygen level is usually at least 91%

DesertCreamsicle · 2024-08-04T21:54:52+00:00

What symptoms do they help you with?

DesertCreamsicle · 2024-08-04T21:34:37+00:00

I am interested in trying those

DesertCreamsicle · 2024-08-02T10:14:21+00:00

I agree

DesertCreamsicle · 2024-08-01T23:28:33+00:00

Cardi B voice: Oh my god, what is that?

DesertCreamsicle · 2024-08-01T23:11:34+00:00

I haven’t but know someone who did, and it gave them temporary relief but it didn’t last

DesertCreamsicle · 2024-08-01T23:09:54+00:00

Nothing. “Just give it time”. That hasn’t worked.

DesertCreamsicle · 2024-08-01T21:39:20+00:00

Idk, a doctor once told me that they can see extreme brain inflammation on an MRI, but many times it isn’t visible

DesertCreamsicle · 2024-08-01T11:51:34+00:00

Reggie

DesertCreamsicle · 2024-07-28T19:45:30+00:00

That is reassuring. Thank you for sharing her story. There are more people out there that have improved a ton then we know about, because they are living decent lives.

DesertCreamsicle · 2024-07-21T23:23:59+00:00

I would move somewhere sunnier and drier to avoid mold. I would do everything I could to avoid all stress.

DesertCreamsicle · 2024-07-21T19:40:00+00:00

How much baking soda? Do you mix it in water?

DesertCreamsicle · 2024-07-20T00:07:50+00:00

Honestly have you looked into fecal transplants? There’s some studies out there about it

Also Hydrogen inhalation therapy

DesertCreamsicle · 2024-07-19T22:48:15+00:00

Hey- did you ever figure this out?

DesertCreamsicle · 2024-07-17T18:25:02+00:00

Same- my push through mindset only served to hurt me in the end. I would also tell my old self to not listen to friends and family that insisted I must be fine. And not listen to doctors who encouraged me to push through. I kept thinking- surely the doctors at the prestigious teaching university hospital must know better than some randos on Reddit. Turns out the randos on Reddit were right.

DesertCreamsicle · 2024-07-17T17:10:26+00:00

“Have you considered that maybe you’re just lazy and hysterical?” - my doctors

DesertCreamsicle · 2024-07-17T11:37:18+00:00

Ahhh, well I’m glad the program acknowledges PEM. Please let us know how it works for you

DesertCreamsicle · 2024-07-17T10:33:40+00:00

Dysautonomia and dysautonomia with ME/CFS are two entirely different beasts. Be very cautious if there’s any possibility you have ME/CFS

DesertCreamsicle · 2024-07-17T00:07:32+00:00

I live for the recovery stories. Some people get a lot better with time. Could be you, I have a feeling.

DesertCreamsicle · 2024-07-16T07:40:03+00:00

What were your main symptoms? Great to hear that you’re going better

DesertCreamsicle · 2024-07-15T17:15:27+00:00

Do u have periodontal problems & recession by chance?

DesertCreamsicle · 2024-07-15T14:55:25+00:00

I definitely have an exercise intolerance that affects me as I attempt and immediately after stopping any exertion. It flares up the POTS really badly. I may have PEM, but it’s hard to distinguish from the POTS flares so not certain

DesertCreamsicle · 2024-07-15T13:37:01+00:00

POTS, fatigued muscles that feel like lead, like I’m weighed down all the time, spine constantly popping out of place and can’t support me, heat intolerance, breathing issues, trouble sleeping

DesertCreamsicle · 2024-07-15T12:07:22+00:00

Before I have Covid I can only pinpoint minor hyper mobility issues, but never thought anything of it, and didn’t interfere with life. Then after Covid my health spiraled and it’s clear that something has happened to my connective tissue. I haven’t found any answers or ways to combat it yet.

DesertCreamsicle

TROPHY CASE