Getting close to 2 years now. Its over. Pssd and pfs are no where near getting solved.
I’m past the three year mark at this point. Had some pretty bad months recently. Anxiety surges out of nowhere, concentration almost zero and sexual desire/ability essentially non-existent. Real tired of feeling like crap and solving the problem does still feel like a distant dream so I understand how you feel.
On a more positive note, I hope that the ongoing study in Kiel and the upcoming study in Tampere will grant insights that at least bring us closer to a clear picture of what is going on and hopefully that means someone can come up with something more targeted and tangible for patients to try. It’s a painfully slow and bureaucratic process from where I’m standing but at least there’s some good and proficient people out there doing their best for us and I try to have faith in them.
I recently donated 1000 EUR to the research. Perhaps it isn’t much in the grand scheme of things but I just want this shit to be figured out asap. Other than that I just feel my life is in this inescapable standstill compared to my friends and family. It really sucks to constantly feel like I’m missing out and falling behind in life. I try to ‘kill the time’ as best and as productive as I can but I would really like to move on and do other things.
Anyway, I hope things will get a little better for you soon, in whatever way possible.
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It’s likely we are suffering from dna damage, which if that’s the case we are fucked for good, I think this condition is far worse than just epigenetic changes.
I’m already 6yrs in with no improvements and as of a month ago I’m unable to work my body continues to deteriorate.
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@AaronF so sorry to read this, in the back of my mind u were one of the guys that I thought would recover with time. I’m so sorry. Has nothing improved after all, whaf about the food sensitivities?
Nothing has improved I’ve lost so much tissue around my face, legs are incredibly weak I’m having issues walking now. Allergic to basically anything I eat. Sleep none existent. Hell is probably better than this
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My muscle atrophy has been going on for over a year now. I feel anxious and numb every day. I don’t know when the muscle atrophy will stop