Hey man, i actually had a similar experience to yours. Almost immediate testicular pain, then lightnight through the body, shaking, pins and needles, etc. Im three years in and it took the first year and a half or so to stabilize
18+ months with pfs now, not much to update, still in pfs hellā¦
one of the worst aspects of this disease is how sensitive ive become to everything. you really have to avoid a ton of things and itās impossible to live normal life.
people allergic to nuts have to think about their allergies from time to time, itās a pain in the ass but very managable but pfs is like being allergic to 10000 things, you have to be alert and think about it all the time. so many things can cause a permanent worsening that it becomes a nightmare to deal with it
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the psychological toll this disease takes on you is immeasurable.
every day a crash could happen, from any number of things and if it does no one on earth can help you. even without further crashes the numerous symptoms are beyond brutal. any number of these symptoms would be life ruining by themselves but combined its torture
i canāt plan anything because i dont know how long i will be around.
there is 0 point of posting this just wanted to vent
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Can totally relate. Just the other week I had to go to the dentist for a tooth I cracked on a popcorn kernel. While fixing the tooth he drilled out my silver fillings and replaced it with composite. Something stirred up my symptoms because my hypnic jerks came back as well as other things. I want just a like a year of healing with no setbacks but even that seems near impossible. And yeah I donāt plan things at all anymore. .