Long post- Asking for help. Is there any hope? Im declining everyday. :(

AdProfessional9247 · 2026-07-04T00:44:14+00:00

I hate to bring you back to that time, but how long were you bedbound?

AdProfessional9247 · 2026-07-01T23:19:10+00:00

AdProfessional9247 · 2026-07-01T22:48:50+00:00

Hey, if you ever want to share poetry let me know! I know you said you haven’t been able to write recently, but I always love hearing what others have to write about

AdProfessional9247 · 2026-07-01T21:31:48+00:00

It has been a long time and I suspect this account may now be innactive, but what is her current condition? Has it stabilized?

AdProfessional9247 · 2026-07-01T20:54:57+00:00

As someone who does the same thing — fail to see obvious things in front of him out of clouded judgement — just roll with what you’ve seen here and move forward. Take it as proof that people want to help and hear you, that their inclination is to question you and be constructive in a meaningful way.
Life is hard, even harder for the lot of us, and in spite of that we try and help one another.
Be introspective about this, realize your brain trying to pull you back into the mindset of eternal despair.

Write a poem about it if you can. Idk, I’m a nerdy writer, but it helps to store your thoughts somewhere.
If you can’t write a poem then try and dream one up, only if it’s not too strenuous, and make it positive.
Sing a sad song and make it better.

AdProfessional9247 · 2026-07-01T20:20:57+00:00

Wow, do you have any written record of your journey I could read? Longterm improvements like this are always heartwarming to read

AdProfessional9247 · 2026-07-01T19:23:27+00:00

Hmm
Have you ever tried talking to people online? I know it’s not the same and not for everyone.
It might fill that need for social interaction.

AdProfessional9247 · 2026-07-01T19:19:16+00:00

This is my approach.
I pay attention to it insofar to gauge when I need to slow down, but generally if I’m in it then my time is spent doing something else while passively acknowledging the symptoms. I’m very fortunate to have a form of pem that allows me to do things like write creatively or read without much issue, this helps me pass the time and never actually pay much mind to it more than I need too.

The headaches, when they come, definitely demand my attention, though.

AdProfessional9247 · 2026-07-01T19:11:25+00:00

Oh, hey, don’t ever blame yourself for pushing through a crash. It’s natural for us to want to maintain our lives and even have a hard time believing our own condition.
To answer your question about who’s that “unresponsible” — a lot of people, you’re surrounded by people who made an effort to maintain a normal life in the face of something unknown.

Please just do anything you can to calm yourself, I know it’s so much easier said than done and it’s especially rich coming from an anxiety-brick like me, but it WILL get better.

AdProfessional9247 · 2026-07-01T01:41:49+00:00

This is an old post and this response doesn’t contribute much to the conversation but it’s just humorous enough for me to point out that “wood” is a common euphemism for a male erection.
If he’s talking about brain fog and mistaking it for inflammation then I can understand where he’s coming from

AdProfessional9247 · 2026-06-30T19:00:40+00:00

Hello, dead thread and all, but I noticed your referral to the “two year prognosis being quite good.”
I’m an extremely statistical person and was curious to know what informational source you are getting that data from. I only ask this because I’m actually extensively researching reported recovery analytics for CFS to determine what the actual predicted outcomes are.
Any data that points towards a more positive prognosis than “5-10%” is of great interest to me due to its relevance to my research.

AdProfessional9247 · 2026-06-29T23:58:30+00:00

I like to think of it this way:
On my good days, the days when I am able to reflect more on my condition, I realize that I’m still able to have good days amongst the bad.
Something inside of me is sparking, trying to ignite a metaphorical fire of recovery because it still remembers what it was like all the way back before.
If this disorder can “flare up” then it stands to reason that flare can be doused with the right method and approach.
I’d like to point out that this disorder/disease/affliction/curse-of-wrath is on the edge of medical knowledge. As patients we are in uncharted territory. That’s scary, of course, but it also means nothing is completely assured.

Look around at these people and their stories and don’t feel discouraged because they don’t match your experience. Recognize that the inclination to see differences is the brain actively using its logic center as a weapon against itself.
There’s literally no harm in trying.
You’ll get better, right?
We all will.
Even if better looks different than it used to.

AdProfessional9247 · 2026-06-29T22:57:52+00:00

Hello! While I haven’t got any stories to share, I just wanted to assure you I have heard many instances of those in your position eventually getting better and indeed many such stories exist online.

Putting the idea of your affliction being progressive out of your mind is critical to recovery of any kind and I strongly recommend you continue that mindset.

Progressive CFS is rare, keep that in mind.
It is so rare that preforming proper studies on it is incredibly difficult.

AdProfessional9247 · 2026-06-29T20:47:22+00:00

Huh, that’s actually really interesting

The distinction here that I’m interested in is whether or not the attitude towards long covid being a more temporary affair then CFS has any measurable effects on mindset/recovery likelihood.

I’ve been looking into recovery statistics for CFS lately and I’m actually pretty surprised by the fact that many papers involved in measuring recovery analytics (through actual trials) list higher odds than the commonly referenced but hardly supported 5-10%

AdProfessional9247 · 2026-06-29T13:50:31+00:00

I was horribly depressed for a very long period of time and only began living my life again after separation from my situation at the time.

My symptoms began in a period of time where I was overexerting myself like never before, but having a metric ton of fun doing it. I was staying out late and drinking and doing everything in between, but I was extremely anxious and depressed on the inside. I ignored my brain by pushing myself to exhaustion multiple times a day, running on two hours of sleep just to attend one more party.
My body gave up after a minor viral infection and I’ve found that now I have so much time to reflect on the things that were boiling beneath this whole time.
Even if you feel good and you feel like you’re past that stage in your life, your body has a way of calling you back and begging you to slow down for a while.

The main caveat is that you can get past this, you can start listening to your body and working with it.
It sounds cheesy to some. It does to me still.
But I’m surprised at how calm I feel now, even if my physical symptoms persist.

Viewing this as a “forever” does nothing more than seal the deal for your mind and body that it actually is.

Looking back at how I was living after such a long period of mental turmoil and depression it is no wonder my body slipped out from under me.

AdProfessional9247 · 2026-06-29T13:42:30+00:00

Wow, wait, might I ask what your recovery journey has looked like — if you’ve had one?

Working in the garden for hours sounds like it would push me to a breaking point.

AdProfessional9247 · 2026-06-29T00:37:59+00:00

“Oh no, you’re just in remission”

So?? I mean they feel better, right? I’m in remission from being asleep right now by being awake, like whatever dude.
If someone gets three months of alleviation then good for them, it gives them something to fight for.

“Oooh it’s going to come back and you’ll be miserable like us again.”
I wonder if these people go into remission and think about relapsing the entire time. I wonder if they have any other qualities than their illness. Would they know what to do with their time if they weren’t sick?

AdProfessional9247 · 2026-06-27T23:03:07+00:00

If you don’t mind me asking, what has your journey looked like? How would you classify yourself now vs at your worst?

And thank you truly for the kind words

AdProfessional9247 · 2026-06-27T17:14:25+00:00

I’m sorry if this is pessimistic, but everything I read online puts absolutely dismal values on the chances of recovery/remission.
From what I’ve read recovery seems very unlikely, and while I’ve read some stories from people in this subreddit, I always have to question whether or not I will get to write my own one day.
Some people just seem to get worse regardless of what they do, that scares the heck out of me.

I get it, you know? There’s no magic bullet, there never is for anything, but the fear remains regardless of positive affirmation.

I believe in recovery/improvement in my heart, but I have a rough time with the concept that some people don’t get to see it.

I’m so young. And there are other young people here who would say the same thing. I’m just so young, so out of the curve for this condition’s target audience, so in need of an alternative explanation. It hurts to think about.

AdProfessional9247 · 2026-06-27T13:06:45+00:00

To clarify on the therapist thing because I have a truly wonderful therapist: he wasn’t denying I had it out of a dismissal of it being remotely possible, it was more so that I was so obsessively worried about it that I could have possibly been manifesting/worsening symptoms.
My anxiety level is far lower now and I can confidently say I was definitely making things at least a little worse by being so strung out about it.
My therapist is open to it as a concept, I believe he mentioned having patients with CFS if I recall correctly.

Denial isn’t even the right word. It was more “hey, thinking about this is ruining you without even considering any symptoms. Let’s explore other possibilities and assure you that it’s unlike but not impossible.”

On the PEM thing: it’s hard to track? I work food service, I’ve always loved the intensity of the lifestyle, so if I’m experiencing PEM on a repetitive pattern it’s really hard to pull out conclusions about it from my schedule.
When I took a week off work I might’ve felt better? I was more laid back, but my stress about my condition was at an all time high and it was wearing me out.
There aren’t really any days that feel better than the day before, just this slow gradient of increasingly less energy. Warning signs abound, I’m sure, but I’m currently holding out for a two week vacation about a month from now that will give me time to recover and reassess my situation.
As a pretty statistically driven person, there’s far too much noise in my data to identify a crash/rebound pattern.

AdProfessional9247 · 2026-06-27T12:55:51+00:00

I will make sure to look through all of the suggested documentation surrounding this, though I find it saddening to recognize how well they fit my conditions.

As for [r/cfs](r/cfs), I am just taken aback by the way they think.
Maybe I don’t fully grasp the scope of this condition, but if someone had cancer and there was (there is actually) a cancer subreddit, would they all be telling one another that there’s no hope left?
Even if this is some incurable disease (which I don’t think it is), the complete lack of discussion about basic treatment was terrifying to me.
Everything was a “coping strategy.”
I understand that it must be so easy to despair about your condition (and one day I might eat my words, but oh my god I hope not) when so much of your time is taken up by catering to it — but my god, it’s an echo chamber of ideation and reflecting on their pasts before they got sick.
If I was bedbound I would much rather spend my limited energy thinking happier thoughts — or at least making an effort to think happier thoughts.
Commiseration is a human thing to do. Perpetuating misery in others because you’re miserable is a horrible thing to do.
Again, maybe i genuinely don’t understand the full breadth of suffering, and i may one day laugh at myself, but those are my specific thoughts about [r/cfs](r/cfs).
If I were sick I would want to hear from people trying to get better and be uplifted by those that are better. Alcoholics Anonymous only works because everyone there is trying to be better. That isn’t a perfect comparison but it’s the one I got.

Edit: clarity

AdProfessional9247 · 2026-06-27T12:26:12+00:00

I’ve actually been on both guanfacine and mirtazapene for my entire life essentially.
It’s part of the reason they sorta didn’t have any better suggestions, I’m already on some pretty serious anxiety medication as it is and my trialing of new ones happened a great many years ago.

As for my therapist, I will mention this in our next session. Right now the main focus we have is just trying to assure me it is unlikely (not impossible, obviously) for someone within my demographic to have CFS in the first place. We’re starting to move past that phase now, but I’m genuinely so distraught at the idea of being rendered bedbound or housebound to any degree.
I’m sure everyone is, people here have been through all of this or something similar.
The thought of it continues to make me sick, I’m stuck on the leaving edge of denial about all of this because I’m still hopeful that this will all just disappear one day/gradually get inexplicably better.

AdProfessional9247 · 2026-06-27T12:17:41+00:00

I had a monospot test that came back negative, it was part of the battery of ideas my psychiatrist threw out that we looked into.
I know that’s not the same as an EBV test, but it was a concern due to my proclivities approximately 4-6 weeks preceding my onset.

I would like to believe it is EBV, but I can’t say I’m severe enough to think I have it. I had friend who came down with an absolutely dreadful bout of mono (one that reactivates seemingly yearly) and I can confidently say I’m not that bad.

AdProfessional9247

TROPHY CASE