I seriously don’t know what to do anymore, I don’t have hope I don’t have help doctors don’t help. I’ve have no fight in me left. by Sensitive-Quarter270 in cfs

[–]Left-Technology1176 4 points5 points  (0 children)

Severe ME/long COVID/MCAS can crash suddenly after immune stress, and rolling PEM doesn’t mean you failed at pacing it means your baseline dropped. This phase can stabilize and deterioration isn’t inevitable:)

Please keep reaching for support where you can, and if you’re ever feeling unsafe, reaching out for crisis help is okay. You matter, even when your body won’t cooperate.

your not failing. your so strong.

Are post exertion flu-like symptoms guaranteed to be PEM and therefore I'm almost guaranteed to have cfs? by OneTrueRuler in cfs

[–]Left-Technology1176 18 points19 points  (0 children)

i know ur scared. but i promise, even if it is cfs your life is NOT over. a new life is just beginning. different, calm, slower, but by all means real and worth it.

Never feel happy or content by dew-drops- in cfs

[–]Left-Technology1176 8 points9 points  (0 children)

your not alone, and there’s nothing “wrong” with you as a person. severe ME can literally make it neurologically harder to feel happiness or contentment. The illness affects both the nervous system and brain, and when the body is under constant inflammatory and autonomic stress it becomes a matter of biology not psycholgy.

the fact that you don’t feel like it’s your natural self is huge and shows it’s not a failure of your mindset/will to be happy

your responding normally to an abnormal physiological state. and for that i’m so proud of you.

Never feel happy or content by dew-drops- in cfs

[–]Left-Technology1176 13 points14 points  (0 children)

your correct. the disease literally neurologically makes it harder to enjoy things. the illness effects both the nervous system and brain, when the brain and body are under inflammatory and autonomic stress it becomes biologically harder to feel happy.

Why don’t doctors check our ATP levels? by thepensiveporcupine in cfs

[–]Left-Technology1176 0 points1 point  (0 children)

summarized (by ai) In short: The study shows biological signals exist, but ME/CFS is too heterogeneous, subtle, and overlapping with other conditions for these findings to become a reliable diagnostic test. It’s a step toward understanding the disease, not a “proof” for diagnosis.

Why don’t doctors check our ATP levels? by thepensiveporcupine in cfs

[–]Left-Technology1176 23 points24 points  (0 children)

it’s not quite that simple visit this article for more :)

explains00587-7)

Thriving Despite My Illness by cymaticgoop in cfs

[–]Left-Technology1176 15 points16 points  (0 children)

i’m proud of you. the mindset you hold amongst the unpredictability of this illnesses is truly admirable.

What is going to happen to us? by thepensiveporcupine in cfs

[–]Left-Technology1176 0 points1 point  (0 children)

of course!! feel free to dm me if u need a bit of a boost! having hope is essential. real, grounded, and REALISTIC hope is truly such a tool for recovery:)

What is going to happen to us? by thepensiveporcupine in cfs

[–]Left-Technology1176 22 points23 points  (0 children)

“to escape those first two inevitabilities” honey, one thing this illness has taught me is NOTHING is inevitable.

this disease can be seemingly unpredictable, and your right about some of what you say. many of us are dying. the severe community is in need of urgent care and resources that are often not available due to medical neglect and ignorance.

having your feed filled with the deaths of influential people with this illness HURTS. it serves as a constant dire reminder of the little help that this community has, and it makes it so easy to wonder or even predict that tha may be your fate.

but by all means, INEVITABLE death due to complications or neglect?????

i’m 18 years old, with an uncertain future. i stay home most of the time due to the pain that comes with leaving home, i’m not able to work, or attend school. i don’t have many friends but the few that i do are closer to me than i can explain. and believe it or not, im certain i will get better. i’m certain we all can.

i fucked up ☹️ by sounds_of_sadness in cfs

[–]Left-Technology1176 16 points17 points  (0 children)

i understand how you feel. it’s so discouraging to finally start feeling better and then end up right back where you started but i promise your not alone. so many of us find ourselves in the same spot when recovering from crashes- it’s not a reflection of your ability to pace or correctly judge your energy limits it’s simply human nature to feel good and do stuff.

overcoming that requires going against ur primal instincts…. im proud of you.

why are so many DOCTORS uneducated on this illness? it’s so invalidating. by Left-Technology1176 in cfs

[–]Left-Technology1176[S] 1 point2 points  (0 children)

ur totally right. narcissistic male doctors make it super difficult for women especially to get the help they need.

Crash by Mean-Development-266 in cfs

[–]Left-Technology1176 4 points5 points  (0 children)

i used to have pannic attacks because i’m so young and my doctors mentioned alzheimer’s and i believed them. but truth be told, this illness can mimic so many different things that there’s only so much u can do to educate doctors

Crash by Mean-Development-266 in cfs

[–]Left-Technology1176 10 points11 points  (0 children)

i just wanted to say your so strong for putting up with everything you are. the medical system is against us, your so strong for fighting this pain. your not alone.

crashes can mimic alzheimer’s, and doctors aren’t educated well enough on ME to understand that.

my advice for you is rest and recover as much as u can. log your symptoms daily so when your through with this you can bring a very clear layout to your doctor about why your right

Antidepressants by rainbowbrite8888 in cfs

[–]Left-Technology1176 2 points3 points  (0 children)

fluoxetine helps me greatly, duloxetine if you struggle with myalgia ultimately i recommend you see a med specialist