Msab1990 story - from hell to stability

General Discussion
#1

Hi all,

I’ve been away from the forums (both here and solvepfs) for almost 2 years - back in 2016/17 they were toxic and the most horrible place to be. I am so pleased that upon returning, there is a real sense of optimism and progress, which is super refreshing. I know this means other, more experimental, forum members have been driven away, but at least it seems like we’re about to make some huge leaps on the science and media fronts. I’ve expressed it privately, but huge thanks to @awor @axolotl for leading the science front, and from what I can see, @Jaime and @pete on the media awareness front. You guys are real-life fucking superheroes (can we do superhero badges for those who’ve contributed significantly?)

My story is pretty similar to everyone’s here, but I’ve now had PFS for 6 years. I’ve come close to calling it quits on life over 500 times (I’ve documented this in a personal diary) and forced myself to vomit up sleeping pills when I actually took that plunge. Thank goodness I did.

Just to recap my sides:

  • All the mental/emotional sides are the worst for me - I still can’t shake anhedonia or severe brain fog after 6 years. I have welcomed 3 beautiful nieces and nephews into the world since I’ve had this and although I love them, I don’t really feel much when I’m around them, which is sad.

  • Brain fog, anhedonia, visual snow/floaters, memory problems, concentration problems, sleep problems all remain

  • Physical sides such as thinning skin, muscle loss, stomach fat, etc - the usual suspects

  • I have sexual sides, but not as bad as most. Zero libido except when I take certain illicit drugs, but can achieve and maintain erections. Sporadic nocturnal/morning. Almost rarely get a spontaneous erection.

I am back and want to contribute in a big way - I am speaking with admins privately about this and hope to contribute some of the skills I’ve learned in the last 6 years to our cause - but if anyone else wants to connect, and particularly around media, communications, and fundraising I would love to chat. I have done the survey, am donating regularly and will be doing 23andme as soon as my kit arrives this or next week.

I also want to give an update for those in the early days of this shit: life does get better

It may not be the same as before, but you can still achieve some of your goals, and you will get more stable. 5-6 years ago I was getting 2 hours sleep a night, lost everything, lost friends, was suicidal daily, tried every protocol known to man (including cdnuts), was living with my mum and a shell of a human. Fast forward to today and I have achieved:

  • completed an MBA with honours
  • launched my own business which performed okay, and ran that for 2.5 years
  • got a job at one of Australia’s top 10 startups (according to LinkedIn) and have now risen to be a team leader, and report directly into our COO.
  • got a secondment in the United States for 6-12 months, starting in 3 weeks. I’ll be living in Salt Lake City
  • bought a small boat that I take out fishing every second weekend - it’s my little stress reliever and is one of the only things that makes me feel something strong - a real sense of satisfaction and a rush when catching a good fish
  • reconnected with friends and family, and have a stable social life
  • now throwing everything into getting better

I’ll be updating this diary of sorts every week, but if you don’t hear from me, please don’t worry I am probably just busy. I am eagerly awaiting the Baylor study, and awor/axo’s research efforts. I would encourage everyone to contribute.

One last though - I did some simple math today. There’s been 16k adverse reaction reports for Finasteride globally. Let’s assume there’s many more sufferers out there who don’t know what’s wrong with them or that we haven’t engaged.

If even those 16k sufferers contributed $50, once, we would have a kitty of $800k to contribute to research and finding a way out of this shit. Now is the time to act as one, more than ever.

Cheers,
Mitch

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#2

Wow. Congratulations, man. That’s exactly the kind of inspiration we need here.

Sorry for the deluge of questions, but: What things would you attribute to your turn around? How has your sleep improved throughout all these years? How were you sleeping when you managed to achieve all of this?

I agree about organizing a campaign to bring about more awareness and fundraising to the PFS foundation for those who have the time, energy and the means to. I get the desperation, but there is something to be said about the true power of what organization can do over a collection of atomized individuals pissing in the wind haphazardly trying every supplement there is to be tried out there. Not that we can’t do both at the same time.

#3

There’s definitely no magic to it - just bite down on the mouthpiece and dig in. Every single day.

I would say the biggest factor is just time, and trying to do the best you can in your life every day, regardless of how fucked up it may feel at times. Distract yourself. Take it slowly, but try to do something every single day. Meditation and reading before bed help with anxiety, which means I can get 7-8 hours of broken sleep every night and generally I’m ok energy wise.

As I mentioned privately, I take Xyrem/GHB for sleep which helps a little bit, but is certainly no magic bullet and not something I’d recommend unless you can afford it.

Being hopeful helps too. Imagine being around with this back in the 90’s or 00’s when there was little help, zero science - nothing. When I returned to the forum a few weeks ago, I cried my eyes out after seeing the work axo and awor are doing. Do you know how incredibly far we’ve come in the six years I’ve had PFS, as a disjointed community with no direction? We’re a few landmark events away from bringing a lot of people together, which is amazing.

I think the biggest downfall of this community to date has been the inability to communicate clearly and with a series of achievable goals in mind, because the suffering is so acute and unbearable. It makes it hard to unite a community when people are so fixated on feeling just a little bit better, for just one day. We’ve all been there and it is nothing to be ashamed of. But instead of working towards achievable milestones together, we go off in search of miracles, often at great expense.

I believe a lot of this has to do with being completely in the dark; something Baylor being released will hopefully change. By being able to point to real science with at least some sort of a clue, means the foundation and admins can clearly articulate and communicate next steps, and raise funds more effectively. Right now, people are skeptical and easily distracted, and with nothing to work towards, they feel the foundation and science is pointless, and/or too slow. Simply put, they’d rather spend their money experimenting in the hope of getting lucky. Again, nothing wrong with this.

But, when you consider the sheer amount of money that has been effectively pissed down a drain over 20 years, it does make you wonder what we could have achieved if everyone just gave as little as a couple of hundred bucks.

4 Likes
#4

I can vouch for the bleakness of thinking you are the only one with this condition. Not fun times for me in the 2000s.

There are certainly those who took Accutane in the 80s and 90s who are still living this nightmare alone.

#5

This post is awesome gives me hope

#6

@Sugarhouse Said: " 6 years ago I was getting 2 hours sleep a night, lost everything, lost friends, was suicidal daily, tried every protocol known to man (including cdnuts), was living with my mum and a shell of a human" I feel the same Situation. But I’m 60 (5mg Finasterid for bpg,) and I stay in bed allone in my house, for 2 months now.

Did you stay in the same way, the first time?! And than you got the Energy for your way to study and start up company. Please Tell me. I’m loosing hope. I think many others here look at you, to get the strengh to get out of lethargy and live a kind of life again.

#7

Give it time. You’ll come to accept it and move on with life. Allow time to let the shock wear off.

#8

OK you suffer pfs since 2017 for 4 years allrady. Yes some here over a decade. So you have to arrange with the new live situation or to jump from the next Tower Block.
My question @Sugarhouse , @orthogs and @alltheoutherguysintheforum is about your strangest time in the beginning of your new "killing joke pfs live"up to your personal progress time after time:
Did you hang up in bed, depressed and frustrated the first months too. And after what time began your stabilisation.

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#9

No @Exsexgod I never hung out in bed. I tried to continue to live by life as I knew nothing about PFS. It was horrendous but getting up and going outside is extremely important.

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#10

Today I have driven to our beachclub at the quarry lake going to swim. Yeah it felt good. Not so overcrowded as on the weekend. I’m not such an olympic swimmer anymore, but the cool water is good for the body. If IT IS Not so hot anymore, I will cycle and walk again.

You are right. You have to Go Out of the bed everyday. Otherwise you loss all your Fitness and all your muscles.

Thanks

2 Likes
#11

Hi @Exsexgod

Sorry for my slow reply here. I remember in the early days it was extremely difficult to get out of bed and do anything, both physically but also mentally. I just didn’t see the point in being alive which my life had shifted so dramatically, so quickly.

At the time I had a full-time job, so I just forced myself to get up and go, otherwise I had no safety net. I would have been homeless. It took me about 9-12 months to regain enough energy where getting out of bed wasn’t complete torture.

These days, if I could, I would still lay in bed all day and just watch Netflix. Some days, I do. But by giving myself hope that one day, science will have progressed to where I am who I used to be, I have trained myself mentally to force myself out of bed and get on with my day. I call it ‘artificial motivation’.

What gives me hope is that by taking all of these small steps - speaking with my family and friends, speaking publicly, working to solidify good research opportunities and advocating on behalf of our community - in a few years we will finally have an understanding of what is happening to us, and our condition will be accepted.

I encourage you to find something that gives you hope, whether it be your family, finding a treatment for our disease, whatever. It will make it easier to find that ‘artificial motivation’ to keep going.

Please feel free to reach out privately anytime!

1 Like
#12

Prolouge: I write not to get insane (Charles Bukowski)

Thank you for your reply. Many here have to work, they have a daily frame and they have to function. Not the worst situation to handle pfs, not to think about the new reallity all the time.

Other young guys with severe symptomes go back to their family. Some of them are total demotivated, paralysed by the symptoms and near to be bedbound.

Me elder guy 60 yo, living in my house, allone nothing to do, no one who cares about me. My little daughter lives with her mother. My :kiss: gone away. Yeah depressions are not the best healing protocol.

So

" artificial motivation "

is a good idiom, to look for small goals again. Like meeting, visiting or calling one old friend. Make a little walk. Going out to a cafe. Find some motivation again. But it’s so difficult to go little unestatic asexuell steps instead of looking for the next tinder affairs being used to a hedonic live.

Meeting here all the 20+ and 30+ victims image I have to say thanks god, that I never had hairloss problems, never took this fucking hairloss pills, never practized the Killing Joke to prevent my enlarged prostain with the nature product SAW Palmetto.

But prescriped Finistarid against prostain enlargement and use the shit, before screening the internet I sit in the same boat.
The past ist the past. Now ist now and that ist this horryble diasease.

I felt like a man in his best Years in Januar 2021. I now I feel like an 80 yo man, with muscle weakness, asexuell, trying to do my household. M

Mostly I’m tiered of this kind of live for the next 1 or even 2 decades. Only my little daughter and the fear of the brutality to realize suicidal thoughts (in a hypermoralic Europe without gunshops - ironicly!!) and you all hold me here.

#13

"image It is incredible that SSRI’s, Psychopills, Accutane is prescriped to childs and Propetia to so many young man. This ist against ethic, childrens rights and human rights. This ist as brutal as clitoris cutting. "