And you know funniest thing of it all? My hairloss is non-existent like wtf, I have brain fog, insomnia feel like 70 yo but I have a head full of hair, my existence is God’s comedy at this point.
Damon, you pointed that your hair was falling again? how’s that? I supposse the AR in the scalp is working again (DHT doing it’s things), however I have found severe cases also with complete hairloss stop so I am stumbled upon this
Got a B12 shot from the doctor because I’ve had many, many labs drawn (Lyme, STDs, autoimmune markers, Hormones, Iron, ferritin, copper, etc etc with nothing abnormal besides:)
low range copper, low range ferritin, low range B12, and low range vitamin D.
B12 shot has me feeling notably more numb and anhedonic, I feel zero emotion, apetite, libido, desire, etc. Nobody knows whats causing these issues. Chronic telogen effluvium hair shedding, all of the hairs have the white bulb attached, and it’s over the entire head.
I’m sorry to hear about what’s going on, Dknighten.
Feeling worse from the B12 shot could be due to them using methylcobalamine (which I believe is common in shots) instead of the inactive, unmethylated from of B12 cyanocobalamine. Others have had similar reactions to the methylated form.
lol yeah i’ll check which one they used. My life is over regardless, my symptoms are so severe that I know my body and brain aren’t coming back from this. Too far gone man.
They used it as a methylation treatment. Together with S-Adenosylmethionin, called SAM or AdoMet.
And a normal butcher medical doctor reacts like:
“Oh hormon paneel lacking just give it an overdose” Total full honks. Like psychiatrists too. No matter what they are doing. Only stressing a destabilized system, going more worse.
With causal gene treatment a metamorphosis from the butcher in the slaughter house medical doctors and lobotomizing psychiatrists to a little bit more intelligent and empathic medical scientists will come.
To late for us, the medical mainstream fucked!
I payed 2700 € to a so called pfs recognizing doctor and at least he wanted to treat me with B 12 and B Complex Mega Infusions.
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 
