Completely disabled, bedridden

Coping
#1

I don’t want to be negative but since I got PSSD I’m completely disabled. My brain feels so damaged and numb. I suffer from severe severe anhedonia, severe executive dysfunction, severe loss of motivation and drive, severe cognitive impairment, severe fatigue, deterioration of my physique, etc….

I just don’t understand how this can be so severe. I just don’t get it and it’s torturing me. I feel like a zombie. It’s torture to not be able to feel absolutely nothing. I lost everything to this condition and no ones takes me seriously.

Is anyone else (mostly) bedridden? how do you cope? I think the symptom that keeps me bedridden the most is the severe severe anhedonia/ loss of drive / executive dysfunction. My brain is so so numb now.
No dopamine left.

I’m just deteriorating and don’t knew what to do. I’m just 19 (got PSSD at 17) can’t imagine living until I’m 80 with this condition

End of rant.

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#2

I have PFS and I fight the fight to stand up every day. Starting at 7:30. I tell myself ok you can stay to 9 o clock. At 9 o clock I go downstairs to open the rollos that the neighborhood don’t see that I sometimes bedridden. Than I try it at 10 o clock. 11 o clock. Every hour I try to force myself to stand up. The worst days I stand up at 15 pm and order a cheeseburger by pizza service. (And nobody should tell me a better Livestyle will solve all the symptoms of a PFS with 3800 epigenetic altered Genes. That’s cynical like, it comes all from your head, or to tell PSSD victim, just stand up make your day and you shall be fine. It’s incredible hard for a severe PFS or PSSD victim just to go outside for a simple walk. But I know real severe pssd sufferers who force themself to do that.) Than I hang in my chair and try to force myself to make the household, nothing. Than I try to force myself for a little walk in the forest nearby my hometown / village. Than I try to force myself to by something in the evening in the supermarket. Sometimes I have success, sometimes not. Than in the evening I drive to the gas station sometimes to buy beer and chips. Than I lay down watch the same videos every evening. All the day I chatt with other PFS and PSSD victims. I don’t have a shower. My house and garden is wasting away. I look like a bum.

But I know here on the forum some guys with PFS are bedridden 24/7. They can’t stand up anymore. Even for the basic things.

And the horrible thing is that you and them are so incredible young. I hate it so much that pharma drugs are abused on childs. I hate it so much that Hairloss pills and foams sold to young men. And finally I hate it that there is no black box warning on the leaflet of all the fucking pills that there can be long lasting severe side effects for some people.

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#3

That must be so tough
maybe trying to force yourself to do things like going for a walk outside everyday or some gardening could help a little bit to prevent further deconditioning

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#4

It’s an existence at best for some pharma need takingi task in order to to do this everyone needs to report their sides to the health authorities, tell their story. Etc. Without much evidence of people suffering side effects it appears to be a bunch of depressed goons with underlying physcological problems. Too many do nothing it infuriates me. I know a guy who has been bed ridden for 5 years His is in a terrible state and has carers going in yet he continues to push the MHRA, DRs etc

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#5

It’s absolutely horrible that people are going through this at such a young age and not have their condition acknowledged.

There are people out there who do take you seriously, are trying to generate more awareness for the condition and looking for a real solution. I am confident that at the very least on the awareness front, things will change for the better.

Make sure to let people in your environment know you’re going through a rough patch and that you don’t have the zest or energy that they may expect from you. It’s impossible for them to understand what you are going through, so it’s probably best to just tell them straight up that you are not in the best place and have no way of telling how long it’s going to last, without having to defend the details and minutiae.

I wish you all the strength in the world and that you develop a better baseline over time.
Remember that your ‘rants’ are welcome here and any anger over this entire situation is very much justified. Whether you want to vent or talk about fun things, we are here for you.

Just don’t forget to take good care of yourself in between the anger or sadness and be nice to yourself with what little energy and opportunity you have.

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#7

Dear Kathy, maybe there is a possibility you feel better in a supported living community. Not to suffer alone anymore. Trying to forget the tragody by a daily routine with other people, or just to share the room with another victim. So you won’t feel so alone with all your sadness. Maybe you can contact a social worker to support you. But you have them to tell no pills.

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#8

Hi,

I’m in the same state as you. Unfortunately I can’t offer any tips on coping since I’m hardly coping with this myself. I force myself to take a walk once a day but otherwise I’m just laying on the sofa or in the bed. Can’t enjoy anything so there’s no point in doing anything. I just browse the forums and talk with other people who have PSSD. Sometimes follow the news, but even that feels somehow terrible since I can’t connect to the world around me at all.

If you want to talk with another woman with severe PSSD, you can send me a message. I know this is absolutely horrifying but you’re not alone. I don’t know how long I can keep going with this either.

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#9

Hey,

I also stayed in bed most of the day in the last time. I would get up late like 10 am, listen to some lecture in the morning from bed, after lunch would sleep two hours only to get up to walk with my dog. Lying around is really annoying.
Best way to cope is making a to do list the evening before and having a structure in the day. If there are things you need to do prioritize them and do them in times when the brain fog isn’t that bad. I think forcing one self to do sth is necessary bc at the end of the day you can say ive done this, that and the third and you feel better. Also I try to do sth I like everyday like exercise or playing the guitar.

The last days have been better for me, I haven’t slept after lunch but played the guitar. I think this is bc of the bupropion I’m taking since 3 weeks now.

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#10

“ If cheeseburgers, chips, beers and this website was my approach at the beginning, I would have never healed.

Man I guess most of your symptoms stem from your poor lifestyle.” @mario1234

My god, you know nothing about me, how severe is my case and how much if tried to change my lifestyle to improve yet dare to tell me something like this. 1) despite my severe fatigue I’ve forced myself to do cardio exercise for months which brought no results other than making my symptoms worse and elevating my cortisol more than it already is, and yet I still force myself to go on walks and do light exercise when I can 2) I eat healthy and tried various diets for months to see if they help, keto, carnivore, plant based, paleo, you name it. I try to eat as clean as I can. 2) I don’t drink beer or alcohol or anything that could affect my brain, actually I’ve never drank alcohol in my entire life

You trying to blame my severe case on the fact that I have severe fatigue (that is really really annoying to me) and severe anhedonia / executive dysfunction makes no sense, I’m 19 and before this I was a marathon runner. I was a very dedicated student with academic scholarships. I was a very productive person and was always doing something. loved exercise, I had so much every and had always had a healthy diet. I WISH I didn’t had this severe fatigue to be able to exercise like I used to. I really really wish that. I WISH my anhedonia and brain fog weren’t this bad and I could finish the academic program I was in. But this condition has taken so much from me.

Many people with chronic illness also have severe fatigue that keeps them from being able to do a lot of stuff. My fatigue isn’t the cause of my condition. It’s a symptom of it. Maybe your condition wasn’t as severe as most people in here. Maybe you where lucky and recovered. But that doesn’t give you the right to say that anyone who is struggling more with this is sick because they want to.

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#11

The guy is a troll, don’t get too emotional bc of him.
Sad to hear that exercise is not helping especially with your background. I also went vegan for a while with no improvements, only from an ethical standpoint feeling better and I even did some animal rights activism which also helped me cope with my situation even if it sounds strange.
Its unfair to have this condition when you lived so healthy while other people are doing drugs and are fine.
I try to focus on the positive things in my life, things I’m still good at, my competencies. This pushes my self esteem. I am studying the law and will have an oral exam eventually, which puts pressure on me, but I remind myself that I’m still able to explain sth well if I really understood it, allthough learning has become a chore to say the least.

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#12

I see that my comment has been deleted, however it was not for you, but for the comment of Exsexgod’s.

Either way, without underestimating people’s sufferings, eating cheeseburgers and drinking beers everyday will not contribute to one’s condition. It will most likely make it worse. This was my point to the author of the comment.

Also now I am being called a troll by someone who has no clue of what I have been through since the beginning of my journey :slight_smile:

1 Like
#13

These cheeseburgers and these beers have nothing to do with enjoying junkfood, as laying in bed with fatuige with a bohemian livestyle. It’s the end state of many severe PFS and PSSD sufferers. If you unable to leave the house. Unable to do anything, like making the household or go to the store or for a walk, even to wash the clothes or yourself.
This chemical weapons for ten thousands of victims make people lobotomized. I can’t imagine that this inhuman stuff is still described and in the worldwide online Marketing. Companies like organon, hims, keeps, MSD, it’s pure crime.
I have to write it down, again and again my life was destroyed by a prostate medicine prescribed by a doctor. And the leaflet was a construct to gaslight the patients, about the long lasting side effects.

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#14

And on top of that healthy food blows some of us apart. I lived on fruit, veg, salad and lean protein all of which now I can’t touch because of sensitivities. Low nutritional shit causes less problems. I.e. doesn’t effect hormone levels. So for some there is a reason behind it.

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#15

To everyone: Please flag a post if you think it is inflammatory in any way, instead of spending a lot of precious time and energy responding to it with all the emotions involved. After you flag a post, one of the staff will look at it as soon as they can. We are not always immediately around to intervene, but we do act on these things as soon as we see them.

I had indeed deleted the comment for obvious reasons and sent @mario1234 a message about it. I don’t intend to turn this into a public shaming as the matter was essentially resolved, but yeah it would have saved everyone involved a lot of time, effort and frustration if you had just decided to be nice instead.

I know that staff actions aren’t visible to all users but there goes more work into managing this place than you are likely aware of. We are all patients experiencing chronic and horrible symptoms, so let’s not make the experience even worse for each other than it already is and be nice and not waste each other’s time.

Thanks for your cooperation!

5 Likes
#16

I don’t want to blame @mario1234 too. He wrote, I answered him. @kathy answered.

Like in tressless subreddit you can read stories of men who have the horrible finasteride side effects and feel better after two weeks to three months. In some cases they need half a year to get off all the issues. Some people here recovered from the symptoms in a short period too.

So there is a Greyzone between the normal side effects persist longer and post finasteride syndrome. So complete recoveries are more common in the first 6 months than after more than a year. So I think this natural recoveries are not depend on a good livestyle or a protocol, in this lucky cases the predisposition is so that the changes went away like in 99% of the fin users.

After a time many others show an decrease of symptoms. That’s very very good. And it gives hope to the new ones here on the forum.

And than the unlucky guys and girls / women with fully blown PFS or PSSD for lifetime. We are very very sensible and sometimes daily we talk about our suffering to share the pain with other victims and not to feel so alone and forgotten with this.

We need the exchange on the forums and in private groups to survive. Because no one else wants to hear about our permanent pain and torture every day.

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#17

What do you guys think of setting up a chat group? I could do that.

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#18

Today I m bedridden too. Yesterday I stand up in the morning and was full of action. I made a walk. Some days I can stand up, some days not.
And I feel so guilty laying all the time.

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