I said this back in July and I will say it again:
Our condition is not currently treatable. People have been trying supplements, herbs and protocols for decades to no avail. Often times trying different things makes people much worse.
We have to accept that currently there isn’t a fix for this and move towards a scientific understanding and targeted treatment. It’s not what you want to hear but it’s the truth. The sooner we all accept this the sooner we get out of this.
Agreed. We WILL figure this out but we can’t stay complacent. We must do everything in our power to get our lives back
PFS.
In my first crash the very first symptons to ease with time say 3-4 months were anhedonia, mental clarity (I was sleeping like a champ dunno) after that I was left in a bearable state of being, you know… even if no libido or penis bullshit who cares about that at this point, my muscles keep twitching and articulations crack here and there plus my skin was getting a mess due to lost of collagen but who even cares about that anymore. Being able to feel little emotions + mental clarity + sleep 7h(ish) oh man… it was heaven.
I’m at my second crash right now, zero everything, can’t even read a book, no mental clarity, I am totally dependant, sleep is gone, averaging 3-4h per night and God knows if my muscles and articulations are going to vanish from here… It’s a torture… I know friend.
We can only pray to return to bearable state of being let’s resist 4 months of this in hopes sleep or mental clarity come back
no improvement.
Has anyone had rapid hair thinning and hair loss from PFS/PSSD? It’s been over a year now, I can’t even brush my hair. Hairline has receded badly and constant itching with severe dandruff. All hairs that fall out have a white bulb on the end.
My digestion is completely ruined, and my stomach and thighs are swelling. Since taking the SSRI back in April 2022 i’ve developed the following:
I have constant brain fog, derealization,
Swelling in midsection, butt, and thighs despite zero appetite
joint pain in knees, wrists, ankles
anhedonia
constant, foul smelling gas after eating
moderate/severe bloating after eating any foods
foul smelling breath, gum recession, and sensitive teeth
numbness/tingling in hands and feet
burning sensations all over skin
dizziness when turning directions rapidly
Constant hair shedding, severe scalp dandruff
zero libido, erectile shrinkage, and loss of structural tissue at base of penis
poor muscular support when sitting, standing walking.
Does anyone have advice for the gut and immune issues?
I know u cant turn back the clock but wtf did u take a ssri for, given your knowledge and understanding of this condition…
All of the symptoms u list have been with me since I fell into the same trap when I was trying to hold on to my career and marriage. I developed these sides overnight, while some were already working their way jnto me.
What has helped, intermittent fasting, omad, white potato only diet, carnivore, water enemas, colonics, ditching sugar and processed foods in every form.
I cycle all of the above as nothing sticks but I’d say things have improved slightly over time. I’ve even had brief returns of my physique which had basically disintegrated along with everything else.
Hope this helps a little
Out of all the posts and length of time on this forum, my interests and searches were solely on finasteride. For whatever reason, the PSSD aspect was out of sight, out of mind. I didn’t realize the extent to which the 2 conditions are shared, and that both classes of meds can cause literally the same condition. I saw it a few times, but my experience was with Finasteride, and I focused on that.
Over 4.5+ years, my body stabilized and I reached a point where I wasn’t continuously getting worse. It doesn’t matter now, but I thought a medication to help manage depression, crippling anxiety, and social withdrawl was the only way for me to have a semi-normal, functional life. I made a mistake and it is what it is. I took Finasteride 1mg for one single day, and Lexapro 5mg for 3 days. Despite the bad decision making on my part, I, once again, did not foresee taking the lowest possible dose of a medication causing all of this. But I was scared and desperate. So here we are.
So let’s get out of it. Why are we just whining about it. That’s the problem with this community. All talk very little action. I have pfs and pssd. I’ve been the most messed for a decade. Finally we have some direction and hope and people want to sit on the sidelines.
Thanks for sharing @Dknighten, sufferers still need to see this as a safe place to openly talk. Good luck man anytime u want to chat feel free to pm me.
I don’t believe that anyone on this thread is just whining about it but sharing and offloading a hellish situation. @Dknighten was one of the very first to come out publicly on a PFS Network video and has shown phenomenal strength and candour. I just felt the need to post as this feels like an unwarranted attack on someone who has never just whined and has stepped up with action. He has never for a moment just sat on the sidelines. This feels like the wrong thread to express your frustration with the community as a whole. @Dknighten has a right to freely chronicle his situation in his own member thread without unwarranted judgements. You don’t even have a member story.
Not sure if you’re able to narrow it down, I developed lactose intolerance post fin with gas and bloating and lactaid seems to help.
wasn’t going to respond to this, but I do have the right to advocate for myself and say my piece, as (like Scotsman professionally mentioned below) this is my member thread.
I’d hardly call being one of the very first from this community to sit in front of a camera “being on the sidelines”. I haven’t done a video since, as the next one I do will be when I eventually improve from this mess. I do agree with your point about the less talking, more action. But every year that i’ve had this condition, i’ve also been extremely busy with securing a career for myself. I graduated with a Doctorate in Physical Therapy and take my licensing board exam next week. Every single bit of that i’ve done with these crippling issues & close to zero help. So as Scotsman defended below, this is probably one of the last member threads to comment something like that on. And it would help to fill out the survey and create your own member thread for reference. Peace.
Proud of you and inspired by you, Damon. You’ve exhibited incredible resilience and a warrior spirit having to endure this disease while also continuing to pursue an extremely rigorous degree and career field. It has clearly paid off for you.
I truly believe you will get better in time, but we’re going to make it our goal to get you and everyone else suffering with this back 100%. It won’t happen tomorrow, but we’ll get there. We all deserve it. Never give up, brother 
Thank you man, I never mention it to brag, just that it has taken all of my additional time for the past 4 years, and continues to do so. A win for me will simply be buying a house and doing my job competently while balancing out the diagnosed PTSD, ADHD, and ongoing anxiety/depression/social withdraw from all of this.
I believe most of us can all see a light at some point, even if it isn’t 100% full recovery back to “normal”. From my experience, just getting to a point where you can force a smile again, or go out to enjoy a movie without having a panic attack and just being content, is a massive win. Every person on this forum is experiencing a type of hell that is unfathomable to many, many people. Here’s to hoping we can see that light.
Props to you man. Your video was the first one I came across when I first got PFS and I had wondered if you were able to continue with the PT degree.
Awesome that you were able to finish it! Mad respect because I’m in school right now and I know how difficult it is with both PFS and ADHD.
Been a while.
Wanted to drop by and let anyone who reads this know that i’m still struggling. I developed PFS about 5.5 years ago at this point. I gradually had some improvements, but it was cut short when I made the huge mistake of taking an SSRI (Lexapro) for just 3 days back in April of 2022. Since then it’s been a shit-show of symptoms, old and new. I have chronic hair shedding, many digestive and metabolic issues, anhedonia and brain fog, and the list goes on. Unfortunately I have not navigated my way through this mess, and many days I feel that I am truly at square one. The only thing that I can honestly be proud of in any regard with respect to my life - I am a practicing physical therapist. My childhood dream, I achieved it. The entire time struggling through this nightmare everyone else finds themselves in. And I struggle every single day. This condition has ruined my perception, my social integration, my emotional maturity. It’s affected what my daily life looks like, my interests. And i’ve lost many relationships throughout this journey. To anyone out there struggling and fighting, please don’t give up. I don’t have a good reason why other than that we are worth it. I cannot count how many times i’ve thought about just throwing in the towel here and calling it. Life with these mental and physical health issues has been so incredibly hard and has impacted my life so deeply. I am so sorry to anyone out there struggling. I’ve been saying this for over 5 years and will continue to say it. We will find a way out, whatever that looks like.
Damon
Hello Damon,
I came across your story because I have very similar symptoms to what you initially had. The only thing missing for me is the loose skin all over my body.
I just finished reading your entire story and wanted to let you know that I am incredibly fascinated by what you have achieved with this disease and how long you have been fighting. I look up to you.
Unfortunately, I also suffer from brain fog and cognitive problems understanding information at the university. It’s difficult to get through the day in this state. To be honest, I wake up every morning and just try to get through the day. The sexual symptoms (penile atrophy and zero libido) are my least concerns since I almost can’t get through my day with the cognitive restrictions.
Can you give me a small update on how you are doing and let me know if the brain fog/cognitive symptoms ever improved for you (before you took Lexapro)?
Thank you and I wish you only the best on this long and rocky road.
Dom
I’m also stuck in the brain fog and chronic fatigue boat, I’ve largely recovered from my sexual symptoms, anhedonia, and skin sensation problems. I’ll sometimes throughout the day have little windows of normality now but I don’t know what triggers them and they aren’t consistent. I’m also running out of things to try, it’s so frustrating. My flavor of brainfog is in the ballpark of processing information properly and the cognitive dysfunction makes me not want to do anything and my mood is horrible a lot. I have the drive, the anhedonia itself is gone but it’s like brain freeze often to try to put it in words.