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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I cannot hide PFS with the dark cycles around my eyes. I’m fat from binge eating. Frust throating. Only a handful jogging clothes, one stretch jeans and two camouflage trouthers I can wear. All my clothes I can’t wear anymore. A whole boutique, with cotton shirts, t shirts, freaky jackets, 100 vests…
I feel totally ashamed to meet women I know from my old life. I haven’t make a post on Facebook for more than a year. I haven’t contacted most of my old friends and fiancee’s because I feel ashamed for that I’m now. But some close friends women or man I still meet.
So if she is a real old friend, she will understand your situation. But nothing is as before.
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Got my first ‘you don’t look that young’ today. Ringing up beer in the self checkout, clerk asks my birthdate. I’ve been told ‘you don’t look that old’ countless times from the same crew but not anymore I guess. Dude said he was joking but his face said ‘I can’t believe I said that out loud’. I can, I’m a walking corpse. The guy is just a year younger than me and was caught off-guard. I was tempted to explain I have a degenerative condition but all I wanted to do was get the fuck out of there.
Fuck. This. Shit.
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Self-reporting form
Name of the therapy/substance: fentanyl
Dosage: whatever they put in these pills
How often you took it: once
Status
Still using [ ]
Stopped with no lasting change to initial symptoms [x]
Stopped with persistent change to symptoms [ ]
Duration of use: Days [1] Months [ ] Years [ ]
Response when you started:
Greatly improved [ ]
Slightly improved [ ]
Stayed the same [ ]
Slightly worsened [x]
Greatly worsened [ ]
Current response (if you’re still using) OR Response in the time before you stopped the treatment
Greatly improved [ ]
Slightly improved [ ]
Stayed the same [ ]
Slightly worsened [ ]
Greatly worsened [x]
Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
Greatly improved [ ]
Slightly improved [ ]
Stayed the same [ ]
Slightly worsened [ ]
Greatly worsened [ ]
What are my symptoms: silenced AR, head to toe muscle wastage and tissue loss, disfigurement, fatigue, insomnia
What was I hoping this drug would do: kill me
What did it do: made me dizzy then a two day hangover
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This message from you hit me on a sunny September morning. In my old life the most romantic and emotional time of the year, turned into grey forever. So I can understand your desperation.
Tears from my heart are with you.
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Self-reporting form
Name of the therapy/substance: Diazepam
Dosage: varied
How often you took it: several times
Status
Still using [x]
Stopped with no lasting change to initial symptoms [ ]
Stopped with persistent change to symptoms [ ]
Duration of use: Days [ ] Months [1] Years [ ]
Response when you started:
Greatly improved [ ]
Slightly improved [ ]
Stayed the same [x]
Slightly worsened [ ]
Greatly worsened [ ]
Current response (if you’re still using) OR Response in the time before you stopped the treatment
Greatly improved [ ]
Slightly improved [ ]
Stayed the same [x]
Slightly worsened [ ]
Greatly worsened [ ]
Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
Greatly improved [ ]
Slightly improved [ ]
Stayed the same [ ]
Slightly worsened [ ]
Greatly worsened [ ]
What are my symptoms: silenced AR, head to toe muscle and tissue loss, facial disfigurement, fatigue
What was I hoping this drug would do: distract me and/or trigger a happy accident
What did it do: knocked me out
In a wastage cycle this week, this shit comes in waves and leaves me increasingly disassociated. I have a bunch of diazepam now so trying different dosages to cope. 5mg didn’t do much and 8 to 10 makes me dizzy and sleepy. I was told that benzos and zolpidem together can cause fatal respiratory arrest but so far that hasn’t happened, then again I’m not taking huge doses.
Knee surgery.
I don’t see much on the forum about this as it relates to waste cases so I’ll document my experience. I’m scheduled for knee surgery in April that will involve a tissue graft. I can’t say if structural tissue loss from PFS played a role in the injury but I suspect it did.
There was nothing seen on the MRI that was mentioned by the doctor as a concern regarding the surgery. One item noted was “There is scattered superficial, partial-thickness cartilage loss and thinning throughout the medial compartment, greatest peripherally.” That sure sounds like a good description of what PFS has done to my knees.
I had a PT session yesterday to loosen my range of motion and the visit notes indicate “Quad tone poor”. My quad tone is exactly as PFS left it.
If you asked me a year ago if I’d undergo surgery in this condition I’d have said are you fucking nuts. A knee graft like this, that’s asking a lot of a body that doesn’t seem to care anymore. But we’ll see how it goes.
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One thing I notice is that the knee pre-surgery is less stable than my other knee was when I had a similar injury 15 years ago. I was able to do most activities back then without much problem but this time my knee collapses if I put any lateral weight on it.
I suspect the loss of surrounding tissue in the area from PFS has increased my dependence on the support ligaments for balance. This makes me nervous about the post-surgery prognosis since it takes a long time for the graft to heal over and rehab counts on that tissue to shoulder some of the load.
In related news I went for a physical yesterday, only because I was told I needed to do so to continue my medication refills. They took my blood pressure several times because it was so high they thought their equipment was malfunctioning. They were also alarmed at my weight gain, apparently I’m in the fat gut stage of PFS. I was told that as we age we may not be able to exercise as much as we used to blah blah. I wish there was a video of my facial expression during that…lethal side eye. This was a PA who I’d reported PFS by name to in 2021 but of course that’s long forgotten.
Anyway, the point is that I have a followup appointment the day after my surgery. Assuming I live through the anesthesia (…) I have a feeling I’m going to be getting a lecture on the importance of fitness and mobility as we age and not letting muscles atrophy. Not to mention some surprise about bone density and whatever other unexpected mess they find. I’ll need to do some eye exercises to make sure I don’t strain them from rolling.
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My dear friend, I’m looking like an old fat buffer nut now with my 140 kg ~ 280 pounds an 1.90 m ~ 6.23 feet and the 5 xl army jacket tightens like a sausage skin on my blubery hell belly. My blood pressure I really don’t want to know! My cock is a little sausage tip from a wieners, erected a half flavid cocktail wienerle. Walking a little walk I snapp like a panting pug. But I have still 100 % libido. Fluctuating. Months not. Nothing! Muscles faded away with the crash. As a Nordic Walker, sportive cyclist, and tracker I had calves like a Austrian moutain walker in the Steiermark.
Arnold’s coming from. My brain is switched off. Only memory. Could write my 100 % recovery story with little retards. Or flying to the stars. The late Club 61.
So wish you the best for all. The real motivation for a new healthy lifestyle isn’t really with us. But who knows?!
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Friend I can relate! From 7 inches shrunk to barely two, but still wanting sex so much with high libido, but unable to act with ED! My greatest complaint about PFS!
Maybe we should start a picture thread and everybody can show their tiny cocktail weenie! Share the misery!
Think mods would allow it? Jim
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My knee injury was also a hip injury on the same side and there was a ton of swelling from both. So much so that other than the giant bruise, my left leg looked almost like a normal human leg. All of the empty space from wastage was suddenly filled again and that one part of me was recognizable. The holes and bones were gone and padding was back, at least down to my sock band. Below that it was still skinny like a prosthetic. I could even sleep on my side without pain…the bone on bone discomfort I described upthread was gone. But it was back last night since most of the swelling has gone down.
Surgery is coming up and I’m a bit nervous…healing with PFS is not what it used to be. I wish there was a way to warn the surgeon without scaring him off.
**man, just realized another potential issue here. Last time I had surgery was 2020, pre-pfs and had healthy skin and solid veins supported by subcutaneous fat and muscle. They put the IV in the back of the hand and now my hand is empty dry skin and bone and the veins are mush with no support. God dammit.
I saw a post on YouTube somewhere from a dude who’s pelvis/femur just broke…They couldn’t figure out why then he said his surgeon asked him if he took any medication and he said finasteride…The surgeon told him was probably what caused it due to blocking hormones…
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