Nah, just your description of those windows of recovery are quite relatable. I’m considering trying bupropion.
I don’t know much about it, but I wish you luck in whatever you try. I’ve pretty much avoided any kind of treatment that wasn’t just harmless supplements, vitamins, probiotics, and exercise. I don’t know if that was better or worse than trying anything else. I don’t think anyone really knows
The only reason I may opt to take it is because of the numerous and relatively consistent positive stories about it improving sufferer’s lives. Of course it comes with risks, I know.
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Nate,
I have 2 questions
From 2011 to 2016 means you had to wait 5 years before get first signals of recovery?
From 0 to 10
If when you crashed you were at 0
Where are you nowadays?
I hope it works and i’ll be trying to keep up with your story!
@finaduta Hello
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Hmm. I think so. My crash happened in around summer of 2011 to fall 2011, about two years after I quit my last meds (dutasteride and previously finasteride). It’s a little uncertain because by the summer I knew something was wrong but i made a complete temporary recovery for ~5 days and then a hard crash down. December 2015 / January 2016 was when I would say “the reversal” started. So 4 years and a few months.
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If I was 0 then, what am I now? And 10 is complete recovery? I don’t know…7? 8? It also kind of depends on what aspect. I usually think about mentally, physically, sexually. Mentally maybe 7 or 8, physically maybe 8, sexually currently 4 or less but generally 6 or 7. I’ll further elaborate on each below if you’re interested
Mentally, i’m a lot better right this second but I don’t know where my mind will be in a few days, weeks, months. I could crash back down, or this latest temporary recovery could have “unlocked” a new aspect of recovery. So like right this second a 7 or 8 but it could change by later today
Sexually, right now, it’s not great. Since this whole temporary mental recovery has begun, i’ve felt pretty much no sex drive. My penis and testicles have felt really shriveled as well and my balls have been kind of sore. It’s definitely below my usual feeling. My penis has been somewhat cold as well. Whatever is happening right now, i have no desire to masturbate. When I urinate it’s drizzling out. I figure my genitals are trying to heal or something so I’m not going to worry too much about it. But the awful pain for the first few years in my pelvic floor area is gone. I don’t feel sick when looking at a woman. I don’t feel the constant feeling of my ball sack being huge and my testicles falling really low. So right this moment, like a 4 or less but generally day to day it’s more of a 6 or 7 and occasionally higher
Physically, like an 8 or so. I can regularly exercise, jogging, hiking, biking, without physical discomfort like when i crashed. Back then physical exertion made my body feel terrible and stressed. Maybe it was lack of sleep. Like everything felt unpleasant though I was never as bad as people here that talk about not being able to go to work or have any kind of social life. 4 years ago I hiked to the top of Mt Fuji to see the sunrise so I was never really limited. I’m still not totally recovered as I don’t sweat as much especially in the pits as before. When I run I feel good afterwards but nothing like the after running after glow i feel when I don’t have pfs or when i run during a temporary recovery. My hands and feet are sweatier than they used to be with pfs (bone freaking dry) but before pfs i was notorious for sweaty hands and feet. It was uncontrollable but it would make me self conscious as people would shake my hand and note that i had sweaty palms. I’d kill for that now. On top of that, my body generally still feels pudgier than before pfs. Digestion, there are still issues.
It could also get really complicated by making digestion, sleep, your 5 senses, etc separate categories
Thanks for asking, when this stuff is on the mind all you want to do is engage with someone about it
In terms of mind
If you ever had anxiety, agoraphobia or similar dysfunctional mind sizes caused by the syndrome
how are they now? You are a fully functional adult?
@finaduta I would not say I had that during pfs. I had anxiety, OCD, and depression long before pfs, starting when I was in college. I sought treatment for it and was taking an SSRI before starting any hairloss drugs. I am extremely aware of what anxiety feels like though have never suffered specifically from agoraphobia. For me, anxiety (connected to OCD) was my mind in overdrive, sending me signals of dread that would cripple me. My mental pfs has always been 100% the opposite. Instead of an overactive mind sending me signals of dread, my mind was not active and numb. No overactivity, no dread, no signals at all. Just completely blunted. No connection to any senses or life at all. I’d feel some degree of fear specifically about mental pfs and how long it was going to last but nothing I’d really say was real anxiety.
In fact, when my crash happened in 2011, I was on an SSRI, low dosage. I continued to take it into my first year of pfs but eventually just stopped because there was no point. I couldn’t feel anything so there was no need for it.
As far as am I fully functional adult? Yes. I have a job that I enjoy even if I am not mentally fully able to enjoy it. I exercise semi-regularly. I have friends, I have hobbies, I travel when I can. I don’t have the type of symptoms people describe of not being able to live and work and function at all (thank goodness)
Funny you say that, i also have OCD.
To me after crashing i experienced a huge rise of fears and anxieties that really disturb me.
I was stable before the crash, now i have problems on having just a healthy mind.
Have you ever had to take SSRI again?
Not since probably 2012. After my reversal in 2015/2016 in the summer of 2018 I did have a full blown OCD return that lasted for months (I think it’s somewhere in the forum) and I strongly considered going back on the SSRI and I was prescribed it by a psychiatrist. However, in the end I opted not to take it based on advice from the forum. There are some people who claim something similar to pfs resulting entirely from taking SSRIs. I myself never experienced that in the many years I was on them however with how screwed up my entire body must be from pfs, I didn’t really have any desire to see what would happen if I could at all avoid it
Our mental states under pfs must be completely different. It’s like pfs overpowered my OCD but it sounds like it might have made yours worse. I’m really sorry to hear that and hope things improve for you
Update a few days later:
Well, this has been an interesting time. I’d say I’m still in a mental recovery right now but everything is uncertain. Day to day everything still looks so amazing, my mind feels freer my head feels lighter but everything is on the borderline. I’m having to think multiple times a day, “Is my mind still recovered? Does everything still feel real? Do I feel trapped or not?” and it’s difficult to say. I do feel free, but over the last few days some things like elevated mood came and didn’t exactly leave but it’s not as high as a day ago. So that’s all just to say I THINK I’m still in a recovery but I can’t totally be certain. I’m generally happy with the level I’m at right this second (I think) and if it stayed like this, I could probably function just fine.
What’s been lost compared to a few days ago: I had a really elevated happy mood for the last few days that seems to have leveled out. My sweaty hands have lowered. My sense of smell isn’t really there anymore
What’s stuck around: The world still looks really nice and I feel like I can appreciate it, I actually want to go do things, I want to go to a coffee shop and sit and read. I want to go exercise. Normally, I don’t want to do anything but sit and not do much. And when I’m doing these things i’m not looking at the clock and waiting for it to be over which is how i previously felt with pfs. I’m more able to just be in the moment. I still feel connected to my emotions to at least some degree. Digestion is better. I’m eating and then within moments having a nice burp. I’m burping several more times and then feeling good, like my food is digesting, not that it is sitting undigested in my stomach. Sleep (even though I don’t feel like I completely fell asleep) feels good. Lying down feels good. My body, generally feels good.
What’s gotten better over just the last few days:
I don’t feel bad about my life. During a mental recovery I can feel my personality returning.
Tomorrow if I can say I’m still mentally recovered this will have been tied with the longest mental recovery I will have had and that previous one was 4 months ago. Really hopeful that this is a good sign of things to come, even if I end up losing this recovery
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Thank you for everything.
Is really difficult to find old member, you are like a glimpse of light.
You know what happened with the rest during all this time? They tend to dissapear and never return
I don’t know what happened to all of them. I hope they didn’t do something like suicide. I didn’t post for a very long time because I just wanted to focus on my recovery and not get bogged down by the negativity. There was a time when it was really negative here. I remember posting something like “all we can really do is hope this improves” and someone blasted me for a “damsel in distress mentality.” It was just constantly stuff like that. There also was a split years ago where like some of the forum went to another forum called like solvepfs where they were going to focus on trying to find their own cures and this forum was just trusting that the research would end up finding something. Maybe they’re there? Maybe they recovered and never came back or maybe they’re just coping with it and trying not to check the forum
As an update yesterday I could feel the mental edge slipping. The music I was listening to was starting to create less and less of an emotional response in me. It’s like it would come into my brain and rather than rattle around in here it would a spot that would not move anymore. My mood came down and now it feels like I can safely say I’m suffering from mental pfs again though I’m not sure to what degree. I’ll see today, walk around outside, do some activities and determine where I’m at. This is still really close, like just one screw just got overly tight or overly loose and that was the difference between having a personality and not. On the one hand, sad if I’m coming down, on the other excited for the next recovery and hoping the accelerated nature of these recoveries means I’m gonna eventually recover fully
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I feel that too. Now, after a couple of years of this shit, I can clearly tell when my mental state is OK and when it’s definitely not and experience some negative influence. It’s almost like observing your inner mechanism from aside. As you’re experiencing smth like that too, does it help you to cope with your mental problems?
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Hello, I’m not quite sure I completely understand the question. Before this bout of temporary mental recovery, my mental state was always like this. Somewhat numb, free of much emotion, not much connection to life or my senses, just feel a little negative and never really able to concentrate on one activity for long before wanting it to be over. It had gotten better compared to the first 5 years or so, but that was my general mindset
“Does it help to cope with your mental problems” is unclear to me. Since experiencing the mental sides of pfs I don’t generally suffer from my previous disorders like OCD and depression. Whereas those things are your mind going out of control, mental pfs for me has been a dead numb mind.
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So well elucidated.
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Sorry for confusing reply, now I understand better what you’ve meant.
“Somewhat numb, free of much emotion, not much connection to life or my senses, just feel a little negative and never really able to concentrate on one activity for long before wanting it to be over.” – That’s very relatable for me, although I’m in a better condition now(at least it seems so).
Hello, it’s been almost a month since I replied and definitely more than a month since this latest temporary recovery began. There’s good and bad, bad in that almost everything that was going well has come down in some way. But the good news is is that the down that it came to me definitely feels higher than where I was before Christmas.
I’m always hesitant to say something like “things are better” because I could wake up tomorrow and feel like crap and crash and then it will look like I’m just being inconsistent. Well before Christmas I had been generally doing better as the years have gone by, then I had a full on OCD midlife crisis attack based on dreams I had and for several days everything, emotions, physical feeling, it was all supercharged. Not sexually though, i felt almost nothing in that department. But my emotions were so real and i was just finding myself enjoying music and being moved to tears with scenery, there was a connection to my emotions I hadn’t consistently felt in a very long time. There was a day where that came down and I was hit with depression but almost immediately the next day there was a rebound. During this time, I wasn’t eating almost anything. For I think like 2 weeks i was just drinking a ton of water and eating a salad and maybe having some juice, probably less than 700 calories a day. However, I was also running every day. My runs were amazing, I was able to do this long pathway around the park near my house without stopping, without even feeling tired. All the aches and pains, the IT band syndrome in my left knee, it was all gone. I would get runner’s high, hit my second wind, and most importantly, sweat pretty profusely. My mind was better, i was able to just read a book for hours without wanting to stop, to just feel good being alive.
Weeks later as I went back to my job, most things eventually came back down. My head still feels good and there’s a clarity in my mind that there wasn’t before. I feel like myself more than ever, i feel confident that I could eventually love someone in a romantic way. But the intensity of all of that has lowered compared to around Christmas and New Year’s. I’m back to eating a little more, maybe still less than 2000 calories usually (but oddly enough there are times where i just feel the drive to eat, not even specifically hunger in my stomach, but just this mental drive that i need to keep on eating, it’ll hit and i’ll just start eating anything and everything, those days i’m probably surpassing 2000 calories). When things were really going well recovery wise I would eat and then immediately have a satisfying burp and i could feel the food digesting in my stomach. That’s definitely slowed down a lot, the burp still comes but it takes a little time now. I’m still able to run (prob ran the same route about 20 times since Christmas, it’s around 2+ miles long) but the aches are slowly returning and sometimes it’s harder than others but i’ve still been able to do the run without stopping. One thing that hasn’t gone away is how high definition everything looks. I think that might (fingers crossed) be here to stay. When I look at the mountains on my run, it does look amazing. I’m prob not as emotionally moved as i was a month ago, but i still feel moved. Sleep has been up and down, a lot of nights i’m dreaming now and feeling like i got a lot of rest and i want to keep on sleeping in the morning because it’s satisfying, haven’t felt like that consistently since pfs started of course. Though some nights i just won’t feel tired and can’t sleep very deeply. My hair is more bald than before I think, but i guess it could just be me noticing, but i don’t think it is. My personality feels more like me than before or at least more consistently.
As far as sexually, starting with the temporary recovery right after Christmas until mid January I didn’t masturbate at all, somewhere around 21 days. By the 21st day I couldn’t take it anymore. On the drive home I just kept thinking sexual thoughts and I was getting erections on my drive home. I was able to feel really horny and could feel real sexual fantasies again. I masturbated at home and it was a good orgasm. I ended up going again that night and two times the next day, and again the day after that, each time it was just a step or two below how sex was before pfs. Sexual thoughts, the fantasies, just the straight up sexuality of masturbating (which is lacking a lot of times for us) was just there. There was also a different feeling in my penis than before, a good feeling, and a good feeling upon ejaculation. For about the next week this continued but there have been times now that I’ve jerked off without much feeling or satisfaction, so it’s lowering but I don’t feel depressed about that. I think it will eventually come back up though of course i don’t know how far up.
So that’s where i’m at right now, mentally, physically, sexually better than before, not sure what % i am recovered but generally satisfied with the progress at the moment, curious to see if this will move much in the up or down direction from here
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Nate can I ask how you’re doing now? I’ve just started having some days like you describe and I hope you’ve continued to experience them throughout last year and 2023.
Hello, I’m doing ok! I was expecting a temporary recovery of some kind over the winter but it never came though I had periods where i felt quite good and clear. But not exactly temporary recovery good or clear. That feels amazing.
As far as every day feeling, I’m finding a lot of how good i feel now is tied to how much time i have to sleep, how good the sleep is, how much i’m exercising, how much i’m eating clean and not drinking too much. For the first 4 years or so of my pfs journey I felt just pretty bad and blank when i wasn’t having a temporary recovery.
Sexually, I’m feeling more like I might be able to perform under the right circumstances, might need a little ED med help, could probably only go once or twice before I got nothing left and my mind might not be 100% into it but it’s certainly improved over time. There are less days now where i feel totally disconnected from my penis. There are days when i masturbate and i was surprised at how far I could shoot, like definitely that’s something that’s gotten better in the last like 6 months. I haven’t had a lot of days where I couldn’t ejaculate or couldn’t keep some kinda hardness and previously I’d have times where my semen came out like a weirdly translucent and dark, like i was just sick, usually when that happened I wouldn’t feel much sensation. I can’t say I’ve had that in awhile. Still no strong morning wood and outside of temporary recoveries, not a lot of times where i just have to jerk off but they do occasionally happen. So overall, i think i’m improving but it’s definitely not happening as fas as i want it to
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