Up and down, but slowly going away yes. I consider it a minor issue now except for my right pinky which seems the joint is permanently damaged. Even that one though has gotten much better. It was to the point where I could not bend that finger at all basically. Now it’s just minorly painful to close it all the way into a fist.
Been pretty much 100% since my last post, but didn’t quite make it the four months. Just wanted to come back and say that PFS (even if you recover) is a lifetime sentence to constant vigilance avoiding 5ari. Never get complacent, remember what can happen if you are.
I ran out of my normal shampoo and my wife put something in the shower and I just used it without caring. Instantly felt weird and decided to look at the ingredients and almost had a heart attack. It said “for thinning hair” on it. I read the ingredients and it’s not like “fin” or anything it was some organic ingredient shampoo with flax seed oil, licorice root and some other stuff. I washed my head like 10 times afterwards with a different shampoo to try to get it off me, but my anxiety spiked so badly. My akathisia returned within an hour and I was unable to sit down for dinner. I have some mild anhedonia, and I’m currently unable to sleep although I feel very calm currently and have just been doomscrolling through my phone. I’m doing much better now than earlier tonight. I have the familiar fire feeling in my brain, and had some very mild hot/cold flashes earlier. I also have some mild muscle twitching which I have not had in quite some time. I will say that I was having some VERY good days recently, so it could be coincidence and I was just due for a crash as previous crashes were always preceded by positive spikes. I’m just hoping that it’s a normal crash again and this is just a coincidence and the paranoia is taking me for a ride. However, I am very concerned of course as the reaction was basically instant.
Just trying to count my blessings and hope things don’t get worse at least. Things are not great currently, but bearable. Want to do some record keeping here in case this happens again so I can look back. Things I noticed improving right before this crash:
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Spontaneous erections were MUCH more common, and I had to “fix myself” a lot which hadn’t happened in some time.
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When laying down, I was very commonly uncontrollably erect
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Libido had huge spike (high desire for some fetishes returned).
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Orgasm quality had a spike
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Desire for some of my most complex hobbies was returning and I was staying up late to do them.
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Sleep was usually to be had within 5 minutes of hitting the pillow and I was sleeping 7 hours straight without fail (although sleep after this point was hit or miss, I ALWAYS woke up at 7 hours even if I slept longer)
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Desire to watch/listen to shows while I fell asleep returned which had been missing.
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Was getting much more annoyed with some things (actions of my kids and wife, the house being disorganized, etc.). Nothing major, but it was a noticeable increase in anger/annoyance.
Short term strategy/goals:
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Increase running and exercise again.
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Cut caffeine intake.
-Increase time outside, will move my office outside. Increase time with family/kids.
- First goal is to regulate sleep again (6 hours per night minimum) and eliminate akathisia.
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Still not sure what’s going on.
The day after the shampoo was the worst day I’ve had in probably 1.5 to 2 years. Got basically 2-3 of the worst quality hours of sleep that night, 1 hour at a time and all my symptoms returned. End of that day though, I slept 12.5 hours and woke up feeling great. I felt very unstable throughout the day though with very brief periods of noticeable depression. I can feel the instability and changes again in my head, it’s terrifying. I slept about 9 hours straight last night and again feel good upon waking, but still don’t feel anywhere close to safe. I have the instability feeling with also occasional feelings of hot/cold flashes. Brain burning has reduced and is only mild now.
As many times before, I fear the false recovery leading to a crash. This basically instantly made my sleep better, which worries me. There are no shortcuts with PFS and fast fixes usually lead to fast crashes.
I’m feeling decent this morning, but my anxiety is noticeably higher. Just trying to keep my hopes up that I’ve experienced the worst and will improve back to baseline from here, no matter how long it takes. Nothing else I can do. I won’t feel safe now unless I make it until like end of 2024 with no further crashes.
This is why I tell people to even be careful with the soaps and shampoos you use. I for body wash just have some generic cheap garbage that seems to be alright. For hand and face soap I swear by hemp based everything, no reaction to it. All your symptoms that came back were my primary worst one’s that led to the sexual dysfunction when flaring. I had severe brain on fire with hot flashes usually later in the day, crippling anxiety from hell when I started being able to feel it again (it was life ruining, could not socially function), when everything was at it’s absolute worst I also had the twitching fits randomly and in bed.
Interesting noting on being recovered more the desire for complex hobbies and fetishes just clicking back into place. This means nothing was lost but something was screwing up our neuropathways through some ironic over excitation mechanic which I imagine is the burning brain thing since the peak of when that happened is ironically when I now feel my best during the day at 5-8 PM. I’m not sure what this burning could be though because I’ve experienced high histamine before this all happened and it didn;t feel quite like this and no spike in it ever causes sexual dysfunction. If anything I became even more sexually active when it did spike. I’m usually the most horny like clockwork around 9-10 AM. Pay attention to when symptoms fluctuate during the day and you’ll notice circadian patterns with them.
Yes, for the longest time I had a very circadian pattern to my symptoms. I would feel absolutely dreadful starting around 6 AM and lasting until late afternoon. Things would start to get better around 6PM and by 8-9 PM I would have a few hours of feeling decent until my meager attempt at sleep for the night.
It was the akathisia/anxiety that would seem to be the primary symptom to fluctuate, but it would affect almost everything else about my state of being. Like for you it was crippling when active.
Since the other day, I haven’t been back to that bad yet, but the brain fire is there currently reminding me not to let my guard down. I’m currently in a state that is not 100%, but if I got stuck this way I would thank the PFS gods for showing mercy and live the rest of my life in peace. Just the fact that I can sleep is gift enough, I can deal with the mild akathisia, anxiety and brain fire. Sexual symptoms are there too but not even on my radar as something to concern myself with.
Still no idea how bad I messed up here. I am now fluctuating on an hourly basis again. I can feel the changes in my head. Akathisia and muscle twitching has mostly abated, but my anxiety, depression and anhedonia fluctuates greatly. Sleep thankfully has been good again, about 6 hours last night and I spend more time on the good end of things than the bad. Still terrifying after so long at the top with little to no dips. Right now I feel like that was just a “warning shot” and I’m back on the way to recovery, but who knows, I could still just as easily crash any day now. Living every day like it’s my last, because it very well could be.
I had already been ramping up my running again, so I just pushed it up a little more which helps with symptom management. I can’t handle the 8-9 mile sessions I was doing before, but hitting in the 4-5 range instead and plan to push higher.
I’m hopeful that you’ll return back to baseline sense your sleep and the other symptoms have improved. Wishing you the best of health
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Swollen and sore breast/nipples again for 2nd time in my PFS journey, wtf?
Chocolat? It’s strange, maybe because the Arginina… It seems that PFS can creates some kind of colon inflammatory disease and with it autoinmune or low immune function…
Here muscle rigidity and very rigid trembling hands… WTF is this Poisson?
Hi Tiro,
Hope you’re doing well. You may be interested to note that for the past few months the rigid hands completely resolved for me other than the permanently damaged swollen joints. All pain and stiffness was completely gone though. Even my pinky (which is the worst) recovered like 90% mobility.
It’s back now though, just not as bad as before.
Thanks Henchman. How much time did you need to get there. I am 1.5 years outside of Finasteride and I don’t feel any improvement
I’m currently just over 3 years.
So, here’s the situation. I’m doing much better already and since the crash, my sleep has really improved dramatically back to maybe pre-PFS state. Now I can break the 7 hour barrier, but the biggest change is that when I wake up I feel like I used to in “not being a morning person”. The mental symptoms fluctuations are still there but steadily becoming less drastic by the hour. I will be depressed/anhedonic/akathisia for a few hours now and then be good for about 1.5 days. Other symptoms are still fluctuating wildly, but seem to be lowering in intensity. Libido is fluctuating, but at peak it feels pre-PFS.
I have two competing lines of thinking here. First, I very well could have crashed from the shampoo and am still very much in danger of further crash (false recovery). I was good for so long without change and then this is the worst crash in years, so it is hard not to link the two. I have had worst crashes than this though and survived, so I think that it is likely that I will be ok (at least in some capacity, yet to be determined). I think worst case is that this is a recovery setback, at this point.
Second, I am of the mind that the simplest solution is usually the correct one. For example, my doctor told me that they could not necessarily attribute my symptoms to finasteride. So, either I randomly developed a long list of 30+ different symptoms at the same time I stopped using finasteride that is extremely similar to hundreds of other people that also used finasteride. OR, I have PFS. Simplest solution is correct. So, either I took the perfect amount of creatine that crashed me just enough to set me on the road to recovery, then washed my hair with just the right amount 5ari shampoo to crash me, but not debilitate me, and lead to further recovery. OR I was going to recover anyways, and it’s just coincidence that these things happened together.
Now, I want to say I really at this point still feel like the creatine and shampoo had an effect on me and you could not pay me any amount of money to touch either one of those substances again. However, the logical part of my brain is telling me that I’m likely in the wrong here. I guess we will never know for certain though.
My recovery has always followed the same pattern, crash > recovery. The best analogy I can come up with is it feels like my brain (and all the interconnecting systems) are switching gears. RPMs go up to a certain level, then my brain has to switch gears (crash) which allows for higher overall speed but the RPMs drop for a bit and things are temporarily unstable while acceleration continues. Just a thought I had when I was trying to think through everything logically.
I’m really not sure which solution is right, but I was always err on the side of caution and avoid creatine and 5ari. It’s a small inconvenience to prevent devastating scenarios.
Glad you’re feeling better, I’ve seen that some people are very sensitive to 5ar stuff after the recovery, same people still do dance with the devil after recovery and take 5ar stuff but seem fine, either way, I’m glad you’re okay friend.
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Thanks man, wishing you the best of health as well.
Today’s my 40th birthday. Today is also the EXACT 3 year anniversary of the day after my first 100% PFS insomnia night. I will never forget the straight fear I had. At that point I had read the horror stories of all the people that had been basically driven insane by complete inability to sleep. I didn’t sleep at all for basically 2 weeks. I remember calling my mom to tell her I fucked up. Calling my boss to ask her if I could somehow put a halt on all my work-related travel. The start of many sleepless nights and even more horrifying days. Today is also the day I planned to end things if I didn’t improve.
But I did improve, and even though I’m unstable currently, I don’t want to end it. Today is a good day.
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Happy birthday man, hoping you’re not feeling too bad right now as you said you’re unstable.
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Still up and down, but improving. Had yet another new symptom I’d never experienced. Disassociation. Thankfully it was mild (I think?) and only lasted like 6 hours. It wasn’t anything that caused me to immediately need to go to the emergency room or anything like some of my other symptoms make me want to do, I was still able to go about my day for the most part. But it was immensely uncomfortable and unsettling. I caught COVID which seemed to make my swings a little extra chaotic and this was just the cherry on top.
I think/hope this may be the last road bump I will experience for a while. I’m really feeling better for the most part. I’ve really upped the cardio and I’m back up to 6-7 mile sessions again. I’m slow as molasses still, nowhere near the level of fitness I was at previously, but working my way back. I think I’ll be able to restart that 4 month clock before too long.
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Hi Henchman, for my COVID vaccine and afterwards COVID infection leaded me to hell. I have been trying to improve since them. But both COVID vaccine and COVID infection made my symptoms much worse. When you have a preexisting illness as PFS the vaccine and the infection can potentially make your PFS much worse. You can develop also long COVID.