Let's start become real people

Great thread for those who feel able to share, and do note our youtube project.

Agree with @jinstewart - Gorgeous and, importantly, very valuable people. Don’t let anybody make any of you feel you’re not - truth is on our side :slight_smile:

Also…crikey that wolf tho :smiling_face_with_three_hearts:

(More animal pics pls)

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Jin you can be brave too! We arn’t the ones that should be ashamed. All the professionals and family that didn’t believe should be ashamed! We need to be seen and heard, not embarrassed. Hopefully you will join us gorgeous people one day. :star_struck:

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Your memories break my heart I have so many moments looking back like this. I also feel like a self confessed crack addict when I look in the mirror. Sad thing is they have it way better. You totally look like a friend of mine.

haha crikey for sure. Ok I’ll swap for your share axo :star_struck:

@Greek
I do not participate in the project because, honestly, I consider most of the administrators of the hypocrites. I don’t feel part of a community. I already know that I will die, but I don’t want to become a martyr for PH.

If someone’s career were to be put at risk and they don’t deem the potential benefit worth risking it over when they’ve got dependents to support, I don’t think it’s right for us to judge them for picking the people they love (such as their kids, spouses, etc.) over themselves and other people suffering. It’s a complicated situation for some I guess.

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Well, I’m sorry to hear of your low opinion of the admins, and I assume the moderators.

Everyone here is the same, all struck down with something they didn’t deserve and we’re all just trying our best.

If you want to help, we’d love to have you help.

Bunny, just a quick response to you, have you ever tried magic mushrooms? Some guy here said he got his emotions back with using it. You might want to do a research on Psilocybin mushrooms and dopamine relation. Your story broke my heart, hope you find a way to get your emotions back.

https://www.ncbi.nlm.nih.gov/m/pubmed/25342005/

Thanks Cooper, but increasing dopamine actually harms me. So does decreasing it. There’s a problem at the receptor that mirrors the way PFS has effected the androgen receptors. Like same mechanism different receptor. I’ve had 10 years experience of my brain responding incorrectly, enough to know what I should be staying well away from.

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Why do you feel this way?

Holy shit, I am so sorry to hear that. Are there others like you on the PSSD forums? Is it a form of PSSD or is there even terminology to classify your affliction? That is just so wild and heartbreaking. My deepest sympathies.

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I started on an antidepressant withdrawal forum where I found one person but her reaction wasn’t as bad, she got better after year. The PSSD forums annoyed me they were all over the place. Here is the only place I found an explanation that made sense with all the fucked up stuff that had happened to me, this forum was way ahead with the science. This may seem like a reach but I guess if the PFS people could find out the problem mine would be the same, just different receptor. I know maybe I’m reaching, but I need hope. I know I’m rare, too rare to start my own foundation or for anyone to listen. I honestly think I’m the only person stupid enough to keep taking a drug that was causing them so much violent mental and physical pain just because their doctor said they had to.

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Hi Bunny I’m very sorry you are in this situation. I wish that didn’t happened to you or to anyone really.
Anyway I am just writing you now because I want to let you know I really don’t think you are stupid or an isolated case in your experience, infact I also took another 2 months of the drug that caused me a bad bad avverse reaction( after 2 hours my body was a complete battleground) just cause my doc said so. I think as a psy patient you are always in the mindset that someone else knows better than you. Also the pain was so unimaginable for me and probably for you too that I can totally see why you wanted to be supported by the doc in hope that it would stop and do not forget you were under the influence of the drug also.

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Wow, thanks Sara thats super comforting…its pretty horrible having to blame yourself constantly. Nice to know I’m not alone. I had only experienced one panic attack so I wouldn’t have even called myself a psy patient, I was only 20 and I thought doctors were like god. They knew everything. I was so trusting. I went in there saying I wasn’t going to take another pill no way in goddamn hell. Then I let him persuade me it would all go away. All I had to do was listen to myself and I’d be alive to tell the tale.

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It was just a mistake :frowning: I really don’t think it’s our fault and you are listening to yourself now!
Who knows maybe someday we will figure it out, I really hope we will be happy again someday somehow
:heart:

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Just want to drop a message here to say it isn’t your fault.

I’ve noticed from my numerous interactions with medical professionals that most of them have an excess of confidence and act the way they do because society has placed them on a pedestal. It’s almost as if it’s taboo to question a doctor’s competence right now. Once I had a doctor straight up tell me that I would never get better if I didn’t have faith in his treatments, and that’s when I realized how primitive medicine really is at the moment (in certain fields, namely psychiatry). While we’ve come a long way from the days when the best physicians in the world used to drain blood as a treatment for everything, including hemophilia, we’re still in the early stages of effectively treating many diseases. I think if professionals recognized the aforementioned fact, rather than overselling certain “treatments”, fewer people would be harmed.

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Thanks Borax!!
I’ve definitely noticed this over the years, in fact I’ve adapted a special kind distaste for them. Especially the oldies that graduated back in the 60’s and haven’t leant anything new since. Plus like you said all those years of feeling so important has made them feel like they know better, not open to question. Like they are the ones that are allowed to dictate what is and isn’t possible, with no updated information or experience what so ever. Like them not coming across it in their practice means it just doesn’t exist. Being blamed for googling when you have more information than them on anything. Just because it’s not written on the insert doesn’t mean it didn’t happen. So smart but so ignorant it all goes to waste. If only I had the blessing of having my blood drained.

I feel equally stupid and regretful. I took SSRIs off and on for 18 years. A few years ago I noticed my libido didn’t bounce back like it usually did after I stopped, in addition to a couple of other sexual symptoms. I was told that it was impossible, that it was likely a testosterone issue and an easy fix, etc.
Anyway I had a bad breakup and took Prozac for a few weeks after being assured things wouldn’t get worse and now I’m a lobotomized and castrated zombie. I had mild PSSD and gave myself the full syndrome. I should have listened to myself and I didn’t. Now suicide is my destiny. Regret indeed.

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I know the feeling of regret. Knowing something and ignoring it. The best I feel is when I stop blaming myself. How were we supposed to know a pill could have permanent side effects when it goes against everything we know and are told growing up. Sometimes intuition is also wrong. At the end of the day at most we were unlucky and naive. I think it’s in the realms of possibility that there’s a way to reverse this. That’s what keeps me going. Suicide isn’t your destiny. Your destiny is the put everything you are into helping this cause so you can eventually be the person you were meant to be. I was on this board 10 years ago when nothing was happening. The amount of hope here now is much more promising. There’s some light.

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Only THREE people revealed their identity. Only THREE. You should be ashamed. We will always remain in the shadows because of you. Go ahead and play the mad scientist by stuffing yourself with supplements, powders and drugs that in most cases will make you worse. It is clear that the situation does not create enough suffering for you. Shame on you! Many members have not even completed the survey.

My name is Andy, I’m from the UK. I have been dealing with hairloss since I was a teenager. I got PFS about 12 years ago, before then I had no interest in taking hairloss tablets. I did experiment with a custom-made hairpiece that looked hideous and was ditched a week after buying it. From then onwards I fully accepted hairloss, shaved my hair short and got on with life. About 6 years later I stupidly took a 4-week course of anabolic steroids and when coming off my hormones crashed and went into free-fall. Afterwards I became very depressed and anxious. Somebody I knew made a joking comment about my balding hair. Normally these things would bounce off me but this time in my current mental state I was destroyed.

Prior to getting PFS I loved working out, being social and active. I had mild depression and anxiety untreated, which came from a troubled childhood in which my own father bullied and terrified me for the first 7 years of my life. This feeling of fear and rejection by my father rocked my self-esteem and led me to become obsessed about physical appearance. With girls I would go through periods of feeling very confident and able to approach them anywhere. Then other times my confidence would completely sink, I’d worry about rejection and find myself paralyzed by fear. It was either all or nothing and I couldn’t understand why. This only fueled my self-obsession with appearance.
In relationships I would yoyo again from confident to being jealous and this would wreck my relationships. I was too ashamed of my behaviour and would talk myself out of getting help. I needed someone to take me to the doctors and ask them to help me but no one ever did. My professional life was going fine but my personal life was a disaster. I managed to overcome the jealously myself through positive self talk and was finally moving on from this. However I was still vain, self obsessed and in denial of these. I masked the flaws, hid the shame but eventually it found a way to ruin me by taking steroids and I never saw it coming. I’d researched steriods for safety purposes, only used small doses but didn’t discover they could crash your HPTA axis and learned the hard way. Hopefully my fall can help someone.

When my hormones crashed all the negative stuff from my childhood blew up massively and put me into a state of fear and guilt. I thought Propecia would heal some of my pain when really it was due to low testosterone. Amazing how one mistake in life has led me to this point of utter devastation. My doctor told me that Propecia could cause anxiety, depression and sexual dysfunction. He knew I had all three conditions and prescribed the drug anyway. I remember thinking I already had these conditions so it won’t make a difference. By then my brain was scrambled from anxiety and I couldn’t think clearly. I had managed a 25k renovation project on my house from scratch whilst working full time but couldn’t make a logical decision about Propecia.

The doctor said he’d not seen any issues with the 5mg dose for old men with prostrate trouble. When I saw the Endo next he told me to stop taking Propecia immediately. That was about 6 months later. After that I tried to go back on the testosterone treatment and it no longer worked, my life was over.

For me life was about laughter, being around others, social occasions, women, exercise, live entertainment, alcohol and exploration. Life was one big adventure. I loved walking around city centres, the busy atmosphere, Saturday afternoon drinks, coffee shops, and cinema on Sunday nights, daydreaming on benches, and bright blue skies on cold days and dreaming of future possibilities. Now I have no connection to any of these activities and feel different to everyone else like I am simply going to die.

Getting PFS has taken everything that I loved and put it into a locked room. This condition has left me broken hearted at not being able to be with someone I love who makes me want to be a better person, raising a family, making a home together and sharing intimate moments. I miss the laughter, the positive effects of exercise and my connection with the world. As I type this tears roll down my face. PFS took away the essence of my life. Now the only time I feel normal is around other sick people on forums like this.

The first pic was pre crash and the rest post crash when my face, skin tone and body started to change.

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