You’re right. I apologize man. Sorry about that I definitely misunderstood your stance there.
My skin is also very drin an wrinkly over my body. I also lost a lot of collagen on the forehead
Botox helps a little but not too much.
Anyone tested some creams such as Hylauronic acid?
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I have volume fillers as well as botox but get a bad reaction after a few days. It’s a price I’m willing to pay given how much damage I have. Fillers are basically hyaluronic acid. However whenever I tried the cream I’d be ill and I’d be covered in red marks. I tried collagen supps which were great initially. My strength would also return but I became resistant to them too. Even coll drinks taken on occasion knock me for six. However they did help a few years ago
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How is this possible that the skin on my chest or belly is not effected with the stretchy-skin issue? But arms (biceps) and underarms are?
Here’s mine. It’s worse on my neck than on my cheek I think but hard to tell due to my beard.
I have also noticed lately that my neck is way thinner than before. My jaw doesn’t seem to be affected as much.
I believe fin cause us to lose fast twitching muscle fibers (aka type 2). This is the “power” fibers and is used in short, heavy work. They are androgen dependant and one reason why males are much stronger than females.
I also found some evidence that muscle loss in the chewing muscle will lead to bone loss of the jaw (this was a rat studie + child study that I interpolated).
So I recently started some chewing excersies to mitigate it. I will also need to add neck training into my regime. Maybe the extra skin is due to muscle loss.
If I put my hands together I can easily hold my neck and have a gap. Before PFS I couldn’t even reach around it. And neck size will impact how your face looks too to a big margin.
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My skin, as you know, is exactly the same even on my neck. I notice that my jaw is cracking when I am wide opening my mouth, but it doesn’t hurt. Did you also notice fatloss around your eyes, like deeper hollows and more wrinkles around?
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I have had the jaw thing before I had PFS. I went to my dentist and they gave me some exercise to do. It took a few months doing daily excersie and it went away and never came back. Might be worth looking into for you.
I will say yes, but it’s very subtle as of now. I actually noticed it first time a few months ago when I was getting a haircut and he had to hold my tempel or the skin would follow the buzzer. He never had to do that before.
So it’s a pretty new symptom for me, even though I had PFS for 2 years soon.
I had covid a couple of months ago, so it maybe have contributed to this symptom appearing. I know we discussed earlier in this thread how a virus could also give this to people.
My larynx goes weak. As side sleeper I have nights problem with hanging through larynx, breath and salvia. Do you have this problem? Because of your muscle loss in your neck muscles.
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No I can’t say I have any of those issues. The neck muscles I’ve lost seems to be mostly type 2 muscles around my neck.
If you have this issue I recommend you go see a doctor. Maybe you have developed sleep apnea? It’s very bad for your health but there’s help.
Also you can do some tongue exercises, it can help with swallowing issues. I do them regularly but I did that even before PFS.
While side sleeping I have the feeling my whole larynx apparat is instable and week and hanging down. So the breath pipeline is blocked. If it’s going on the next night s I visit a doctor. Muscle atrophy and loosing stability everywhere.
It sounds almost like sleep apnea. It’s a very serious disease if left untreated.
“Obstructive sleep apnea is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses during sleep.”
@Cbrandel I also believe the loose skin is down to muscle loss when I had short term recoveries which were generally for a couple of weeks at most my muscles would come back on line and refill and I’d have normal skin. Fix the problem and we’d return to our former selves. Even though its dramatic It’ would be a rapid return.
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I’m not going to wait for a “cure” because best case scenario it will arrive 2030.
I am going to start a training regime for my neck, as I already did for my cheek / chewing muscle.
I’ve been able to lift some more these past months and I’m measuring my biceps and quad. They both have grown a little bit, so it doesn’t seem like I can’t build muscles at all.
Also it seems like since my hormones went back in line (cortisol, progesterone, LH etc) I’ve started to lose some mid section fat.
Worth mentioning that I never “crashed” like many here did. But I never felt the brief recovery many speak off either.
At least my brainfog is 100% gone, I can sleep again and my eyes aren’t dry. Let’s keep fighting and hope our tomorrow is brighter than yesterday.
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The fact that you never actually crashed is a good sign. From what I’ve seen you guys have a much higher chance of recovering. Also judging by you seeing benefits from hormone changes you might not have an issue with your androgen receptors.
I’m not going to wait for a “cure” because best case scenario it will arrive 2030.
It always astounds me that patients come up with these hypothetical dates for a cure based on nothing more than their opinion. Such little basic science has been done into this condition, no-one has a clue when a treatment/cure will be available.
All this does is create a mindset where patients think “the cure” is too far away to benefit them, so instead of funding scientific discovery, they spend their time, effort, and resources on self-experimentation. It’s really bizarre and illogical and creates a self-fulfilling prophecy where a treatment/cure is a long way away, because very few put in the necessary work to get us there.
And the wheels on the bus go round and round.
Sounds positive. Unfortunately my muscles are not responding to exercise and continue to waste good luck my friend
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Is it just me or did someone lese experience the same:
When I use hylauronic acid serum or vitamin C serum my libido and occasional erections are simply gone
It seems to take weeks or months until I come back to baseline
I can’t explain it in any other way
It’s so fucked up, you have to choose between looking old or being an eunuch
Botox is the only thing that didnt give me sides but is fucking expensive
@Klausasab the same I think some of us are extremely sensitive to hyaluronic I have a major reaction to the fillers but my face has caved in a price I pay… I break it down far too quickly afterwards. I expect it’s the immune response. I took devils claw for 1 week my strength began to return, my toilet habits normalised and muscled refilled. My neck started to gain girth too. DC is a natural anti inflamm
You’re totally right we have no idea when or if a cure would present itself. But even with all the funding in the world it would probably take a decade to get a understanding on the underlying mechanism of PFS. PFS is very complex, especially as science today only know a small fraction of how the body truly works.
Science is a slow process, so a decade isn’t an unrealistic guess. I hope I’m wrong, but I would even go so far as to call it an optimistic guess.
Also I don’t agree with your 2nd part either. I see to many people who wither away doing nothing or who hurt themself with crazy treatments. I think there is a middle ground, one where we accept our new self and do minor stuff to boost our quality of life instead of giving up because we can’t go back to our old selves. This is not contradictory to also funding new research.
Of course science is very important and I myself is going to make a donation as soon as new research ventures are presented. But I could donate all I’m worth and it wouldn’t make the cure come even one day faster.
Don’t get me wrong, I really appreciate this forum and all of the staff that are working with scientists and what not. You’re all doing God’s work in my opinion.
But I’ve seen you post the same post in multiple threads and I can’t say I like the condescending implication in it, like we can’t hold two thoughts in our head at the same time.
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Again, this is just your opinion. It’s a very arbitrary timeline. The reality is again, that no-one knows. It could take several studies or dozens, so anyone saying it will take [ x ] amount of time is just pure speculation.
My problem with people making such declarative statements about when mechanisms will be understood, and when treatments and cures will be available, is that they are contagious. Even though you personally might be willing to both fund research and search for incremental improvements, many are not. It is especially contagious for new patients making a decision about how to best move forward with PFS.
I’m glad you’ve explained your position, as it’s helpful context for other patients reading it, and I’m thankful for your support for scientific study when we announce it.
I apologise if you interpreted my post as condescending. That wasn’t my intention.
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