Went to the rheumatologist today, no real reason other than my GP referred me. The only thing that made an impression physically was the gum recession…that got a ‘never seen anything like this before’. They also acknowledged atrophy in my left palm, completely hollowed out below the thumb webbing. That got a ‘hmm’. Hmm is right.
Here’s a great new development. I’ve lost so much padding around my knees that it hurts to lay in bed on my side now because it’s bone on bone. I have to pull the covers between my knees. Motherfucking shit this is.
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Sorry mate but it this resonates with me. I’m terrified of bumping into anything when mobile its like having a sensitive hollow glass skeleton having the knees touching together is very painful same when sitting. It’s unbelievable
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I keep going back to how could have I avoided this. How could I have understood the risk without knowing the risk existed. Like we’ve all heard of flesh-eating bacteria. If it was published that finasteride causes flesh-eating bacteria in some patients I THINK that would have steered me away. Full-body wastage and disfigurement maybe would have got my attention.
I wonder if running Truth type ads would garner a lawsuit. I don’t know if they have those in Europe, they’re graphic and dramatized depictions of real world smoking horrors. Wouldn’t be hard to target the fin-curious either, hell most of the ads I see now are directly related to PFS. “Fight eyebags”, “reduce skin wrinkles”, “diabetes and joint pain” etc.
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Is this not normal? I’ve always had this.
Always have a pillow between my legs when sleeping in the side. Better for the spine anyway.
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Not for me.
This is normal, at least in my eyes. Were you overweight before? Maybe you had more cushioning.
I’ve always been lean and having my knees on top of each other when lying on my side has always been uncomfortable.
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Are you guys kidding with this shit…this is what PFS is for some of us. No I wasn’t overweight, I was very active and had a lot of muscle and supporting tissue that is gone now. Head to toe I’ve lost padding everywhere. Hands, feet, arms, legs, face, forehead, shoulders, you name it. This is what silenced AR does, seriously fuck off with this gaslighting.
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Me neither never had it until the bone side of things commenced. Additionally ice never heard of anyone complaining of this outside of pfs unless they had a medical condition. Its abnormal.
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I meant no harm. My apologies. It could also be your leg muscles used to provide support causing there to be no points of pressure on your knees.
Something I’ve noticed is I get wounds on the knuckles and outsides of my finger joints much easier. If I work on my car or something in small spaces I get these cuts and scrapes way easier than before. As if my skin is a lot softer, less tough.
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It’s not gaslightning, but a genuine question.
There was some guy a while ago freaking out because he had new wrinkles. But his GF pointed out he had them Pre-PFS and he confirmed it via old photos.
Maybe you lost tissue around the knee, I wouldn’t know. But what I do know is that knee to knee was never a nice experience for me.
I 2nd this. My skin on my hands scrape real easy now.
OK some education since you must be brand new to this. In severe cases PFS causes soft tissue loss and things that didn’t hurt before hurt now because of unpadded bone contact. For those of us who report it as a symptom it isn’t normal.
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Yeah, a close up picture of my small, lifeless wrinkled penis accompanied by THANKS MERCK, or COURTESY OF MERCK. That kind of thing? Use the polished shtick of Hims etc. but, you know, the unexpurgated version. I don’t know if writing HAIR LOSS MEDICATION would get round litigation rather than MERCK.
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I was thin as a youngsters and knocking my knees together never caused pain like this, like they’ve been hit with a blunt object and hollow even feel an echo which I also get from my teeth and when I tap my skull. There is no subcontaneous surrounding my skull or anywhere else. Then there’s the additional loss of soft tissue etc etc
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I think people who have lived in their bodies all their lives know the difference between normal and abnormal discomfort. I have experienced something similar since losing subcutaneous fat to my face and the resulting discomfort at times when my face is on the pillow and supportive padding is gone, so don’t doubt for a minute the hellish roll call of others experience.
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You asked way up in the thread if anyone has recovered from this. I made a Success Stories Compilation to answer that question.
I also started fin in 2000 and got PFS in 2018 after stopping cold turkey, I had about 70% of your symptoms and I’m now 95%+ of how I was pre-fin. There’s a slow but constant linear improvement trajectory and although I could live the rest of my life as I am, I believe I can eventually recover completely.
I just want to express that there are people getting better. Five of my friends I met on this forum got better but are not posting. I’m almost never posting myself. I think there’s a bias in the sampling of posts people are making and it does not represent the community at large as many who got better or recovered are not posting.
I hope and wish humanity will come up with a solution and everyone suffering here would see an end to it.
I wish the best to all of you.
Ozeph
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That’s good to hear. Were you able to revert tissue wastage and restore alcohol/caffeine response?
I don’t drink alcohol or caffeine. I’d say I get effects from both alcohol and caffeine but I wouldn’t drink caffeine as my only remaining symptom is insomnia. I can sleep 5 hours and then in and off another3-4 hours. I am fully rested and have normal days, sexuality is normal, brain is normal.
I’m an abstaining alcoholic. I didn’t drink for 12 years but if I drink 1 glass, I’m going down the drain. I’m still an alcoholic and I still have PFS. Both are epigenetic according to Dr. David Sinclair.
I did reverse tissue wastage. At first my balls were shrinking (about 10%). They were hurting all the time and it went on for 18 months, the pain slowly decreased and my balls went back to normal size. I did body building and managed to gain muscle and I’m now gaining fat. I was really skinny 6 months after crashing.
I know I still have PFS because of the typical PFS insomnia, because I need tons of drugs and herbs to sleep, because my lips are still slightly dry after a shower (compared to painfully burning dry 24/7), because I have a hard time maintaining proper guts biome balance (Bifidus keeps dying) and therefore I have pellet feces from time to time.
I used to have day long pounding headaches that no drugs could relieve (6 days a week) and my digestion was completely off. Food would not go down, I had heavy gastric reflux (had to sleep at an angle to avoid drowning), was bloated, stomach and guts, and constipated. Had brain fog, severe anxiety, panic attack, depression, suicide idealization, speech slur, confusion, extreme muscle weakness (can’t stand up), ED, no morning woods, insensitivity, low to zero sex drive, my eyes were burning, I felt cold in the hot weather of Thailand and I’m sure I forget some. Don’t we all have a laundry list of symptoms so long that it’s hard to list them all ?
I did things early on, a month after crashing, that improved my situation and got me on a slowly improving trajectory. Or at least I think it’s the things I’ve done that did that. I can’t prove it.
My 5ar came back (or went up) some 9 months ago. Body odors and hair falling came back, sex drive got up but insomnia got worst. In 9 months, I manage to improve to where I was before 5ar came back.
I crashed 4 years ago, took fin 1.25mg for 18 years.
I think there is hope. I mean, I think it is possible to significantly improve our condition. Will I ever be completely cured ? I don’t know but I hope and believe so.
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God this shit sucks, life so close yet so far. A girl that hasn’t seen me since before PFS texted to get back in touch. She’s picturing funny, happy, strong, athletic mstone. mstone that she activities and drinks with. Not decayed, disfigured, skeletal, sad mstone with shrunk junk who can’t drink, converse, or even enjoy music. Sent my anxiety through the roof, don’t know what to tell her.
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