I am ready to be disabled and paralyzed, to tell you the truth, I want to die, I have no courage, I am weak, these days my symptoms have worsened, I can’t lift the spoon for long, I just want to lower my arms so that he is not so tired. My symptoms probably go beyond anyone else on this forum. Because I was still on repeated medication when I got Pfs, it made me worse than others. My muscles are burning all the time, they are disappearing, joints and palms are hollow marks，the tissue is decaying，
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My withered arms and withered palms. I’m a 75kg adult with arms like a schoolboy. This is real muscle atrophy, A year ago, I could take my girlfriend and drive for hours to camp for the weekend. Now I don’t have the strength to lift a spoon for soup
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That’s awful man. Years ago I was helping my boss at work with something and typing on his computer and he goes ‘man you have big forearms, do you do manual labor or something’. I said no, it’s genetic all I do is mountain bike. Now my arms look like yours albeit hairier.
I hear you man.
When you have the progressive variant of PFS, you can never take your mind off if it. The decay just keeps going and going. We never get a moment’s rest. It’s the ultimate test of one’s perseverance, strength and sanity.
But, there is hope.
There is no evidence that this will kill us. It will stop. It will leave us weak and disabled, but it won’t kill us. That means we can hold out until the cure.
Important research starts this year and there are works being done in the background to accelerate this on all fronts. For the first time, the cure is in sight.
We are the soldiers in the trenches. We must continue to fight and never give up.
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I no longer believe he will stop, because I have had a loss for two years, only this crash accelerated the atrophy，I didn’t realize it until too late
Very brave in posting and sharing. There are a few of us who have this degree of atrophy. Try to hold on in the belief that with a treatment you will return to your former self. When I used to experience mini recoveries the muscle and tissue would return almost immediately. It was truly amazing and filled me with hope. My limbs are like yours, my legs are also extremely thin my feet and hands are amaciated. Deprivation of adnrogens and god knows what else. BUT hang on in there your not alone in going through this degree of loss and suffering. No one has died from this outside of taking matters into their own hands. TELL yourself it will return more quickly than you lost it. Catastrophic thoughts are part of pfs, I am plagued by them too.
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Every day my muscles atrophied and ached, and with them my blood vessels constricted and narrowed，Because of the lack of muscle in the joint, each movement will make a noise，my gums are constantly bleeding and every time I brush my teeth it destroys my gum tissue and my gums recede by 0.5cm，I don’t know how long I can last. I feel like my body is getting old and rotting.，People around me who don’t know what’s going on with me, who don’t understand my pain， Maybe this shit drug can kill me without killing myself，I’m so broken. I don’t know when I can get out，It’s a grind every second. I don’t know what’s going on with my muscles，I’m not taking it anymore. Why don’t you stop shrinking！！！I’m sorry I said all that decadent stuff. I can’t stand it
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My mental breakdown, I read a lot of forum stories, it seems nothing worse than mine, I am pretty sure I will turn into an ALS like condition Recovered people, they are not real Pfs! Not true muscle atrophy! I can’t control my emotions, I’m too weak, maybe I meet someone with the same symptoms as me