My PFS story, didn't know this could happen to a person

yeah, well I’m sorry i cant be too encouraging, because at this point I’m pretty much suffering from the very same sides since the crash. I would say the only sides have improved is insomnia which is completely recovered, and that I dont have a constant 24/7 anxiety and depression, now I’m capable of continue my business.
Yet I have sides that got worse, and such is chronic fatigue and ED. I keep believe though that it can improve in long-term if I could continue regulalry weight lifting.

So I had my first wave of recovery two nights ago. I felt almost normal for the entire evening. Had some excitement feelings about life, and just felt relaxed. I was able to stay up late … I usually just want to go to bed as soon as possible because of my depression. I’m not sure what caused this. I started taking pregnenolone that day. I also had a very relaxing meditation session in my car that afternoon. Who knows … but now im back to depressed anxious pfs baseline. But from what I hear recovery comes in waves like that, and many people say that they start to last longer and become more frequent, so hopefully that is the case with me.

Update -

Symptoms - low libido, ED, anxiety, depression

Supplements (randomly cycle these)- preganolone, tribulus, l carnatine, ashwagonda, gaba, DHEA, chlorella, vitamin D, creatine, maca

Meds - vibryyd (a newish ssri), seroquel ( for sleep), gabapentin (anxiety), hydroxyzine (anxiety)

Status- have had a couple brief periods of remission this week from the anxiety/depression.

Hi @fearsomepigeon

I’m sorry to hear your story, but I’m glad you’ve had some improvements. Please be careful when self-experimenting with supplements as some patients have become considerably worse.

I’d keep giving it time to see how much you improve. However, after the three-month mark, could you please do us a massive favour and complete our patient survey? There’s a link at the top of the forum that explains what to do.

All the best,
Mitch

done. i unfortuanately passed the three month mark last week :frowning:

Thank you. Please keep the faith - things can and usually do get somewhat better over time. We’re all working very hard to solve this and I’d encourage you to read our latest threads about research, our upcoming video podcast, and our new Family Advocacy Group.

Update: I saw an endocrinologist and she checked hormones everything was in range. The only pre fin data I have to compare is TSH I have had my tsh tested multiple times in my live because I have had a fast resting heartrate - especially at the doctor’s - and it has been around 0.6 consistently … now, post finasteride it is 1.08, this is a decrease in my baseline for tsh and I’d bet my life it was caused by fin,/post fin. I have notice that my heartrate is lower than usual too which could be caused by my change in thyroid activity. Since this is the only objective data I can point to should I try to get her to prescribe me something ? I doubt shed be willing to because it is still in range … I think as a group we have to grasp on to whatever biomarker we can find and try to treat it … instead of getting in the weeds so much and complicated theories that can’t be proven or help with engaging a doctor.

Has anyone dealt with less sensitive testicles? I am really upset with this symptom … it feels so weird. I’ve had this since the beginning (3 months) pretty much. It seems alot of people complain of pain in testicles, I wish I had that, not feeling anything is is worse I think.

I hate writing this because I know no one likes reading sad posts about this syndrome, because it makes others lose hope too, but as Aragorn says in the Two Towers, ‘there is always hope’ … so I hope I don’t bring you down too much. I have reached month 4 since discontinuation of finasteride and there is no improvement of my symptoms. I think the first step to recovery is being able to improve anxiety and depression and I have had no success so far. It seems every thought that comes into my head starts a train of thoughts that lead to me thinking about taking finasteride and developing this syndrome.

For example I am working on cognitive behavioral therapy, which basically involves avoiding triggers that give you negative feelings by changing thoughts and behaviors and eventually changing feelings. But it’s hard to avoid triggers when everything in the world and every memory I have before finasteride is a trigger. Why? Because it’s a constant reminder of how I used to feel before finasteride. I can’t think about a past time when I felt happy (which is one of the methods therapists suggest) because I know that If I could repeat that experience I wouldn’t enjoy it like I did back then. I think that if my body could take the first step and give me a day of partial remission I might be able to use that going forward, but unfortunately, I have had no full days of partial remission, just a few evenings that were likely related to supplements I tried.

From the recovery or partial recovery stories I’ve read people usually experience a remission for atleast a day in the first 3 months post-fin. And then they can use that as motivation to keep pressing forward and improve the debilitating anxiety and depression, and once that’s dealt with dealing with physical symptoms probably comes so much easier, in that it becomes easier to follow a protocol or to make appointments with doctors. Has anyone gotten a full 1-day remission/partial remission for the first time post 4 months?? Until then I’ll keep reminding myself of Aragorns words of inspiration in the Two Towers.

1 Like

Got these results ordered from Dr jacobs. everything is in normal range but he said my bioavailable T and my RT3 are on the low end. he is suggesting armour thyroid and clomid to try to bring them up and see if it helps with my symptoms

1 Like

So it’s been a year and not doing any better. I barely still have my job - I cut down to 32 hours - but the workload is still there and it drives me crazy disappointing people I used to work with. I was (still barely am) an environmental engineer. I used to be able to handle large complex projects by breaking them down into little bits and completing each bit one at a time, doing that used to give me a hit of dopamine or whatever each time i completed a minitask that drove me to take on the the next mini-task - that mechanism is completely gone now, there is no task-reward process in my body/brain anymore its just going through the motions for survival and then contemplating suicide every hour of the day. As with many severe sufferers sexual function is an afterthought — but yes things are still close to dead down there. My testicles are almost numb - like you know when you see someone get kicked in the groin - most every guy cringes because they know how much that hurts, but not me anymore - my testicles are just another part of my body … they can feel pain but not the special kind of pain reserved for fully functional guys. Not having ‘balls’ (in the euphimistic sort of way) is one of the main problems with this disease and why it doesn’t get more attention. I don’t have the ‘balls’ to kill myself. I don’t have the ‘balls’ to speak out publicly about this condition. I don’t have the balls to follow a consistent diet and exercise routine. I don’t have the balls to accept I have this syndrome and move forward. My goals is like @Sugarhouse says … to get to as stable as possible with this syndrome so that I can contribute constructively to the community. How do all find a way to ‘grow a pair’ and make something happen - the problem is that’s the very problem we’re dealing with.

1 Like

Ugh and this is the path I’m on, the no task-reward phase has kicked in and there’s only one way out.

didn’t know this could happen to a person
Me neither…and yet it’s been known for decades.

Are you still taking the ssris? They can also cause the side effects you are dealing with right now. Also, check your prolactin just for the peace of mind. If it will be normal then pfs most likely. Your testosterone values are very good from what is seems.

So sick of people telling me to make a list each day of things to accomplish … yes this is something I used to do pre-finasteride, I remember the feeling of slight reward when I got to cross something off a to-do list … this is just not possible with PFS lists are as pointless as my dick

right now I’m taking wellbutrin, gabapentin, and seroquel. Im seeing a psichiatrist that has dealt with PFS and he said this combo worked for one of his patients

I’m so sorry to hear things aren’t going well @fearsomepigeon. I wish I had some more constructive advice than “hang in there”, but sometimes you just need to put one foot in front of the other.

You are incredibly brave making it this far, and even if you don’t feel that anymore, no-one can take that away from you.

We now have an amazing research opportunity on the table (Out of the wilderness: New scientific research and major awareness campaign). An awareness campaign which is getting good cut-through. Keep the faith and keep going as long as you can.

Take care of yourself.

1 Like

I had two of those early on and my reaction to the first one was just like yours. The second one I was too nervous about it going away to enjoy it much at all. Does anyone have any theories about what that is? My guess is there’s a sentience behind all this and it’s done merely to torture us.

Your theory is as valid as any other you might find here, unfortunately.

What is the consensus…a last gasp of receptors? My second one began in bed around 3:30am and felt like a flood of good cheer flowing out from my spine. It felt so strong that I was afraid it would overwhelm my system and shut me down for good, maybe it did.

Wonder if there’s a way to hook a new patient up to a full montoring scan and catch it in the act…bottle it.

It shows that this is repairable. Finding the permanent switch is the holy grail

2 Likes