My PFS story, didn't know this could happen to a person

Member Stories
#21

I’m so sorry to hear things aren’t going well @fearsomepigeon. I wish I had some more constructive advice than “hang in there”, but sometimes you just need to put one foot in front of the other.

You are incredibly brave making it this far, and even if you don’t feel that anymore, no-one can take that away from you.

We now have an amazing research opportunity on the table (Out of the wilderness: New scientific research and major awareness campaign). An awareness campaign which is getting good cut-through. Keep the faith and keep going as long as you can.

Take care of yourself.

1 Like
#22

I had two of those early on and my reaction to the first one was just like yours. The second one I was too nervous about it going away to enjoy it much at all. Does anyone have any theories about what that is? My guess is there’s a sentience behind all this and it’s done merely to torture us.

#23

Your theory is as valid as any other you might find here, unfortunately.

#24

What is the consensus…a last gasp of receptors? My second one began in bed around 3:30am and felt like a flood of good cheer flowing out from my spine. It felt so strong that I was afraid it would overwhelm my system and shut me down for good, maybe it did.

Wonder if there’s a way to hook a new patient up to a full montoring scan and catch it in the act…bottle it.

#25

It shows that this is repairable. Finding the permanent switch is the holy grail

3 Likes
#26

I don’t know Laz, I think that’s what the pedants call ‘begging the question’. But as a man of faith that shouldn’t matter.

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#27

Correct mate that’s the hope. Most get the odd window which is something to hang on to no matter how bad.

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#28

I just don’t know what a treatment or cure would even look like, do you?

#29

Well without knowing what’s wrong with us nobody does. If the root cause is epigenetic, as is theorised, then the hope would be that gene editing technology could possibly be of assistance down the road but who knows. This isn’t even worth giving too much consideration to at this stage because either way we’ve 0 chance of ever tangibly improving the situation unless we know what the crack is. Let’s keep building on our momentum, find out what’s actually wrong with us then we’ll cross that bridge when the time comes.

2 Likes
#31

It’s really pointless to think too far beyond the next 6-12 months of this issue.

I can give you a best case scenario, I can give you a worst case. There’s not much point though, because there are far too many variables.

We have an amazing group of researchers interested in identifying the driving mechanisms involved. Let’s start by making sure they’re well-funded and leave the rest to science for now.

6 Likes
#32

I’m doing ok. Kept my behavior off this stuff. Did ketamine. And on gabapentin, Seroquel, and Wellbutrin. I’m married now. (Settled for a girl but who doesn’t lol) Have to take Viagra lol. If u want my advice - stay off blogs. This sucks in a way cause it offsets public awareness of pfs. But ya. And get a good psychiatrist. I’m not saying pfs isn’t real. But many chronic illnesses can be alleviated in this mind.