You cannot fully appreciate how bad it is

General discussions. Feel free to use this like a support group also.
silverstar
Posts: 122
Joined: Tue Jun 21, 2016 5:43 pm
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by silverstar »

I actually know someone personally who is male, in mid twenties, has 2 daughters, was married (wife left him)... And is completely paralyzed from the neck down from a car accident 2 years ago in a small bumfuck town in nowhereville middle America.

His life fucking sucks. He lives in a nursing home - for old people. He can't move or feel anything. He has no money and no family. He can't have sex or touch his body or anyone else. He can't walk, shit, eat, drink, or hold a pen on his own.

His life changed over night. I keep up with him on Facebook a lot. He's on there allot but he tries not to complain. But he occasionally does. And other times he's positive. He's brave as fuck either way.

I have horrible pssd...I have no sexual fantasies anymore, sex has no feeling... nothing... my life suffers greatly. My family doesn't understand. My partner feels helpless. It's horrible yes.

Even though we "know about" amputation and paralysis doesn't mean it's easier to accept or go through than pssd. I once thought I'd rather have "this or that"...I'd rather lose this limb or that limb. You know...trade one fucking unacceptable life altering illness for another.

Life sucks. Shit happens. We get delt a shit hand and we have to suck that shit up and deal with it. There's no trading places with anyone. This is our life.

That being said I still fantasize about death often. I'm very depressed. I live at home. The list of horrible things that I endured and continue to go on and on.

But fuck giving up. In a sea in infinite possibility of this bizarre and fucking beautiful and terrifying universe if pssd can happen so can anything else.... including getting better.

Tl:Dr Enjoy the ride -or don't. Choice is ours.
User avatar
lost_soul
Posts: 362
Joined: Tue Apr 11, 2017 10:05 am
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by lost_soul »

silverstar wrote:I actually know someone personally who is male, in mid twenties, has 2 daughters, was married (wife left him)... And is completely paralyzed from the neck down from a car accident 2 years ago in a small bumfuck town in nowhereville middle America.

His life fucking sucks. He lives in a nursing home - for old people. He can't move or feel anything. He has no money and no family. He can't have sex or touch his body or anyone else. He can't walk, shit, eat, drink, or hold a pen on his own.

His life changed over night. I keep up with him on Facebook a lot. He's on there allot but he tries not to complain. But he occasionally does. And other times he's positive. He's brave as fuck either way.

I have horrible pssd...I have no sexual fantasies anymore, sex has no feeling... nothing... my life suffers greatly. My family doesn't understand. My partner feels helpless. It's horrible yes.

Even though we "know about" amputation and paralysis doesn't mean it's easier to accept or go through than pssd. I once thought I'd rather have "this or that"...I'd rather lose this limb or that limb. You know...trade one fucking unacceptable life altering illness for another.

Life sucks. Shit happens. We get delt a shit hand and we have to suck that shit up and deal with it. There's no trading places with anyone. This is our life.

That being said I still fantasize about death often. I'm very depressed. I live at home. The list of horrible things that I endured and continue to go on and on.

But fuck giving up. In a sea in infinite possibility of this bizarre and fucking beautiful and terrifying universe if pssd can happen so can anything else.... including getting better.

Tl:Dr Enjoy the ride -or don't. Choice is ours.
I wasn't trying to compare the severity of amputation and PSSD, just illustrating the difference between the response to them. As for your story about your friend, as awful as that is, it doesn't change anything for us. I mean is he meant to feel better because someone else has it worse than him? Positive on facebook - that's a given. I've not told anyone in real life about PSSD apart from doctors and my dad, and even with my dad I lied about how severe and devastating it is.

Also, I don't agree with 'Enjoy the ride -or don't. Choice is ours.' It sounds nice but what does it mean? Nothing. I don't know what the most serious chronic pain condition is, but if you had it and you couldn't take opiates for some reason and there was no cure, you wouldn't enjoy life at all. No choice in it. PSSD isn't as bad as that, but it is really bad, and depending on other things it can stop you from ejoying life - no choice involved.

'In a sea in infinite possibility of this bizarre and fucking beautiful and terrifying universe if pssd can happen so can anything else.... including getting better.' Yeah, and 2pac might be living it up with Michael Jackson in the Bahamas. CERN could accidentally create a black hole and end the universe. I'm not implying that a cure for PSSD is as unlikely as those things, I'm just saying that none of that means anything.

People here aren't angry enough. If everyone afflicted with PSSD bothered to reach out to other victims and all of us that could protested outside Lilly HQ, they'd do something about it. More realistically, if everyone did absolutely everything they could in terms of complaints, awareness, experimenting etc then we'd be a whole lot more likely to find something that helps. We haven't even done that yet. I've said this multiple times before, but I'm not attacking anyone researching or trialing products, it's just the truth. If there was one single thing that empirically, definitely, tangibly improved symptom(s) of PSSD, even temporarily, it would be stickied on every subforum here. I mean look at the Successful Treatment Reports thread: http://www.pssdforum.com/viewtopic.php?f=38&t=166
Also notice that every time someone comes up with a new hypothesis about the causes of PSSD, people in the thread basically work under the assumption that the previous 'breakthroughs' were incorrect and unrelated, even if there's no evidence to say either way. I know a lot of this is because of desperation.

I know I'm really negative here a lot of the time, but I'm trying to galvanise people. we need to be more coordinated and try and get some help from inside the industry, we really do. Small-scale independent research by clinicians is a step-up, and HOPEFULLY some of that will materialise soon, but what we really need is to get PSSD resolutely accepted as a real condition and create outrage about it. For example, there's no PSSD page on English Wikipedia. Someone familiar with that site should re-establish it, get it in good condition, and get a global wikipedia admin to lock it so it can't 'mysteriously' vanish into thin air again.

This is a gut feeling and based solely on intuition, observation and very basic medical literacy, but I think a new medication will have to be developed to cure PSSD. I also think PSSD is permanent if it doesn't start improving within a year or so. If I'm right, it means we need to at least try and put pressure on the companies that made and distribute SSRIs. Even then, they won't bother doing it unless there's legal/political pressure.

Holding hands and singing Kumbaya while we chow down on the flavour of the month herb isn't going to fix anything.
21, male, extreme pssd for four years
Tried inositol (slight improvements) cialis (very limited improvements) yohimbine (slight improvements) maca root (no effect) bacopa monieri (no effect) estradiol-17b (pronounced improvement in all areas of sexuality)
User avatar
Ghost
Posts: 1750
Joined: Wed Jan 21, 2015 11:16 pm
Location: USA
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by Ghost »

The theories on here are developing. They aren't changing. Everything about Serotonin is still true. We are just working around the cause from different angles. To fully understand the hormones, you need to understand the 5-HT. That's how we got to them in the first place.

I spend at least 2 hours a day on PSSD. I have for nearly 3 years. I'm angry as hell. I'm created a website, written articles, raised money, ran the forum, ran the reddit. I can't do any more than I do. I'm not alone either. So many people on here do all that they can.

The moral: If no one is going to do it but yourself, then do it yourself. Find where we are lacking, and do it.

People have done these galvanizing posts for all 3 years I've been here, and it never comes to anything. Never. No one is going to listen to you telling them to act. The decision NEEDS to come from within you, and only you can do it. Most people who read this won't do anything, but that

Set a goal, figure out how you're going to do it, and DO IT.

I'm sick of unnecessary negative posts (and not just you or this thread, it's systemic), and am going to start deleting them. Every past PSSD community has been swamped by it. This forum is a community of support, yes, but it is a scientific board as well.

I'm so sick of negativity. It will never take our PSSD away.
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
User avatar
lost_soul
Posts: 362
Joined: Tue Apr 11, 2017 10:05 am
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by lost_soul »

Duly noted. I won't post that sort of thing again. But we all have different circumstances and not everyone can feel optimistic about this.
21, male, extreme pssd for four years
Tried inositol (slight improvements) cialis (very limited improvements) yohimbine (slight improvements) maca root (no effect) bacopa monieri (no effect) estradiol-17b (pronounced improvement in all areas of sexuality)
silverstar
Posts: 122
Joined: Tue Jun 21, 2016 5:43 pm
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by silverstar »

It means learn to enjoy your life regardless of the shit hand you're dealt. Tragedy is inevitable, but suffering is a choice. You can choose to accept that you have this shit show going on right now and get on with other things. Or at least try.

Surprised I even got a response from you. Glad I did though. I'm not even trying to argue or have you "agree" with me. I wasn't even really replying directly to you :) you can go back into my posts and I have some pretty dark fucked up shit posted here. I'm not perfect by any means. You can direct your anger elsewhere. I'm not your enemy. I'm someone just like you who actually has this same shit.

Trust me I have pssd too. I fully understand the shit show. And I'm learning to "heal" from this right now, while it may not be a "cure" but to me it means accepting the reality of the situation for what it is. That only you will suffer..and continue to suffer. It's your body. It's your mind. No one can take responsibility for YOUR SUFFERING. Someone, someday might say "whoops pharmucuticals bad"...but it won't do a damn thing for your suffering.

There's allot of people suffering from all kinds of incurable disabilities out there... There's really no cure for anything chronic anyway just some alleviation from symptoms and it's not pretty. My mom has lupus from Accutane when she was a teenager. She probably didn't even really have a say. Whoops drugs bad... People are still taking them.

So I'm summary for, "you cannot fully appreciate how bad it is"
Yes, I can. We all can. How will you handle it?
EricCartmanRJ
Posts: 128
Joined: Fri Mar 06, 2015 2:19 pm
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by EricCartmanRJ »

Well, I am 31. Until now, I have no idea about my sexual identity. Because since I was a teenager have been on ssris. Always had erections with girls, but some stronger feelings were missing. As I never noticed men, I was sure that things would get better when I could decide to stay off antidepressants. And it did happened, when I was 26 year old, afraid of losing my youth without sex.
Some pro-sex drugs, for my surprise, indicated not only libido for women, but also for men. I don't even know if I want to get over this condition.
Life sucks. Antidepressant medications are powerfull drugs that not only get libido down, but have the power to supress almost all sexual aspects of a human being.
sadKeanu
Posts: 46
Joined: Wed Sep 07, 2016 11:47 pm
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by sadKeanu »

.
Last edited by sadKeanu on Wed Aug 22, 2018 11:47 pm, edited 1 time in total.
PSSD Lexapro 2016-Present
jaiho
Posts: 249
Joined: Wed Apr 27, 2016 1:26 am
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by jaiho »

You have to change your perception of PSSD.
Meditation taught me that seeking pleasure doesn't lead to happiness.

What do people complain about the most with PSSD? An absence of pleasure, or how good the penis feels or orgasm pleasure, or libido.
Buddhist monks don't seek these out & are the happiest people on earth.

If you change how you think about your situation, life will become much better.

https://youtu.be/4PkrhH-bkpk

It will help.
lukejimmy
Posts: 60
Joined: Wed Aug 07, 2019 8:29 am
Contact:

Re: You cannot fully appreciate how bad it is

Unread post by lukejimmy »

silverstar wrote: Wed May 03, 2017 7:38 pm
There's allot of people suffering from all kinds of incurable disabilities out there... There's really no cure for anything chronic anyway just some alleviation from symptoms and it's not pretty. My mom has lupus from Accutane when she was a teenager. She probably didn't even really have a say. Whoops drugs bad... People are still taking them.
wtf Accutane causes Permanent Lupus??!
Apparently there have been Lawsuits over Accutane causing Permanent Lupus: https://www.kalfusnachman.com/personal- ... liability/
This is huge news how hasn't anyone on the Post-Drug Forums picked this up?
Post Reply

Who is online

Users browsing this forum: No registered users and 9 guests