My story of the road to CPPS - MajorSky

[webslave]

Setbacks, flare ups, graph of decreasing amplitude

viewtopic.php?p=43794#p43794

Patience is a virtue

[MajorSky1]

Any idea what causes the flare ups, versus the whole thing just resolving for good? Seems like it should be some clue as to causatives. For example, this kind of oscillating, gradual decline in flare ups could suggest hormonal, or enzyme cycles.

So with this being my first two week period of relief, I should plan on feeling better again, and then it returning again? Patience is a great virtue, but it's better appreciated when your life is in a state of normalcy. I'm trying to be patient.

So can I ask, Webslave, since your own ordeal with this, is it safe to assume you have seen many, many other people go through the same process with this gradual reduction in amplitude toward healing? It would be comforting to know, and sometimes just a little comfort really helps.

Thanks for the graph. Very interesting.

[webslave]

No condition that involves the nervous system so extensively just resolves spontaneously and suddenly.

Yes, I have seen hundreds of men resolve in this way, some with breaks of years before flare ups return, some with months, others weeks. It is a lifelong, recurring condition that will come back if you lay the groundwork for its return.

[MajorSky1]

First, thanks for the info. I appreciate your time in responding.

I have done a ton of reading and research on this condition, and there's always more to do. It's hard to find a clear answer on many questions such as the one you just responded to, so I'm sorry if I sound ignorant.

I have wondered if it truly is lifelong, and if there are people who never get it again. Or, if as you say, it recurs at different times through life. Isn't it human nature to strive for 100% recovery and think of a clear future without it coming back?

How would you AVOID laying the groundwork for its return? Could you please explain?

Apart from continuing the regimens of therapy, eating well, stretches, mediation/relaxation, and exercise, what else can you do to help prevent it from ever returning again? I don't know if I'd make it if this returned again - and by that I mean if it returns after I've been well for a couple years, I don't think I could work, make a living, keep a place to live. I've been pretty much disabled since November. This time I'm lucky enough to have a refuge to stay and live until I heal.

Like a few other recent posts I've read on this forum, I have found this the most difficult thing I have ever had to deal with. It's no way to live, and duration of this lengthy recovery, although I'm glad there is improvement (I think), I hope to god it never comes back. I'm doing everything I able to do.
I'm trying to get back to point where I can rebuild my life.

I was starting to feel better last week, felt pretty good all way to where I was thinking of starting to look for a job, and plan a little. Then Sunday, the pain started and the anxiety was right on its tail. I understand it's just a flare up, and will dissipate. It's like they say: when you are in a flare up, it's hard to remember what it's like to feel good - and when you are feeling good, it's hard to remember what it's like to be in pain. And it doesn't take long to forget either.

[webslave]

I have wondered if it truly is lifelong, and if there are people who never get it again. Or, if as you say, it recurs at different times through life. Isn't it human nature to strive for 100% recovery and think of a clear future without it coming back?

I've seen all types, including men who have it once for a short time and never again, others who have annual flares, others who have many years between flares, or others like me who had it for about 8-10 years before I finally got a handle on what was causing mine and changed my lifestyle, way of thinking and diet to stop it for good.

How would you AVOID laying the groundwork for its return? Could you please explain?

Avoid the mental, physical and dietary conditions that provoke it. Easier said than done!

Apart from continuing the regimens of therapy, eating well, stretches, meditation/relaxation, and exercise, what else can you do to help prevent it from ever returning again?

Quercetin (or Quercetin), internal massage, and complete change of life philosophy are the ultimate strategies.

I'm doing everything I able to do. I'm trying to get back to point where I can rebuild my life.

But have you rethought the things you did and perhaps still are doing that got you into this position? You have an anxious, stressed disposition that comes through in your posts.

[MajorSky1]

Yes that's true, I know I do. This pain causes me so much anxiety. And I'm frustrated with the way it's so difficult to get away from the pain and anxiety. I can't function when they flare up. I was in healthy, good shape before this started.

As far as the things that got me into this position - I think they were external things I could not control. My father's skating near death for 4 months, and watching him suffer, and watching my mother watch him suffer.

Now, I live with them temporarily, and it's depressing - but I have no where else to go, and I can't work yet. So I'm trying to heal so I can get work, and get my own place. That's a lot of stress, but what makes this so frustrating is that I've handled worse in my life, and pulled it off. But with this stuff, it's so much more difficult. So yes, there are things that I'm trying to figure out how to minimize the effects of on me. I'm trying to figure out HOW to make those changes.

Trust me, in person I don't come across so anxious.

Anyway, thanks.

[webslave]

This pain causes me so much anxiety.

"This pain anxiety causes me so much anxiety pain "

Look at it that way too. I put it to you that your basic disposition before the pain started was a necessary precondition.

My father's skating near death for 4 months, and watching him suffer, and watching my mother watch him suffer.

The cycle of life, every family experiences it.

That's a lot of stress, but what makes this so frustrating is that I've handled worse in my life, and pulled it off.

Sure, but as we get older our ability to withstand stress diminishes. Stress wears you down.

[MajorSky1]

If I could have prevented anxiety, and everything that lead up to it, I would have.

At this point, dealing with stress and anxiety in a healthy way is key. I've never had panic attacks before this, so it's still new to me. Every time one comes on, it's a little different and usually sends me reeling, at least at first. I've made improvements. Someone said the anxiety is the worst part of this (maybe Wise-Anderson), and I would have to agree.

I agree stress wears you down, but I believe that I had a tumult of circumstances that stacked up in an unforeseen way and hit me like a ton of bricks sending me over the threshold for what my nervous system could take. I think it was one of those rare times where things all culminated at just the right (or wrong) time. The past two years really built it up. Is it something I could have prevented? Probably not because everything I did up to the point of this condition were things I did for what I thought were the right reasons at the time. Hindsight/Foresight... I ask myself often what could I have done different? Or, what did I do wrong? The only useful thing about those questions is finding out so that once I get better (and I will get better) I can avoid ever going through this again.

What's important is that each person is aware of their situation, what works for them, finding the most accurate information, and doing the best to navigate through the negatives and false to find the truth, keeping avenues open for helpful people, and avoiding misinformation, and the wrong people.

[MajorSky1]

[edit by webslave: sorry I shortened yr post, I edited it by mistake instead of answering it and lost some text]

I noticed on your "my story" page, you mention you worked in the building even while they sprayed pesticide. Did you mention this because you think there could be some link between a toxin, and CPPS? Or was it more to illustrate how important it was that you stayed and worked.

I remember one of the chemicals was Escort. I've wondered if any of that, even touching your skin, might end up finding its way into the nervous system.

There is a theory that it's glyphosate that is causing the wheat allergies.

Also, I'm wondering if there is a post anywhere that might go into more detail of what you did to get to 100% better?

If there is a detailed, comprehensive overview of this condition and the methods to implement either on this site, or somewhere online that you could direct me to, that would be so much appreciated.

Have you thought of writing a book yourself?

[webslave]

I noticed on your "my story" page, you mention you worked in the building even while they sprayed pesticide. Did you mention this because you think there could be some link between a toxin, and CPPS? Or was it more to illustrate how important it was that you stayed and worked.

Both: it shows my overcommitment to work as well as highlights the possible precipitating effects of chemicals like chlorpyrifos (a nerve poison related to the gas the Nazis used to exterminate people in WW2).

I remember one of the chemicals was Escort. I've wondered if any of that, even touching your skin, might end up finding its way into the nervous system.

Escort (metsulfuron-methyl) has a low toxicity in mammals, no neurological effects documented, so I would not worry about that
http://pmep.cce.cornell.edu/profiles/ex ... l-ext.html

There is a theory that it's glyphosate that is causing the wheat allergies.

The last 3 years I've been using glyphosate very regularly, and no sign of side effects. My own wheat problems pre-date glyphosate.

Also, I'm wondering if there is a post anywhere that might go into more detail of what you did to get to 100% better?

Don't think so. It's a closed book in my life now, something I have largely put behind me and parts of which I have already forgotten. I have a file somewhere with copies of letters I sent to doctors in the early 1990s, full of anxiety and desperation (I was losing my career), and listing my symptoms, rather like some of the posts you can see here.

If there is a detailed, comprehensive overview of this condition and the methods to implement either on this site, or somewhere online that you could direct me to, that would be so much appreciated.

The main site is full of data.
https://ucpps.men/chron ... condition/
https://ucpps.men/prost ... -and-hurt/

Have you thought of writing a book yourself?

No, I'm too busy in real life.

[SoothingSpaces]

Could someone define a "flare"? I think I know. I am flaring quite a bit at work right now. Distressing -- since I have a desk job. Even the soles of my feet are burning ... Any suggestions? I do have a seat cushion.

[MajorSky1]

For me, this whole thing has periods of time where I've felt able to function, and the pain, though still present is sort of more in the background. However, when things flare, the pain goes over a threshold that makes normal functioning very difficult. A flare for me is usually a duo of a wave of pain with a wave of anxiety right on it's heels, or anxiety with pain. The flare resolves after pain and anxiety levels come down below the threshold where I can function, think more clearly, and not feel like someone is twisting my pudendal nerve with a pare of hot, poisoned channel locks.

Soles of feet burning are definitely trigger points ratcheted up - it's referred pain probably from somewhere in the front half of the pelvic floor, or maybe up by the prostate - not precisely sure, but somewhere in that area. I've had that too.

[Caedar]

Soles of feet burning is probably more indicative of central sensitization, rather than plain referred pain from trigger points, especially if the burning is superficial (a feeling in the skin rather than deeper in the fascia or muscle). I don't get foot burning, but I certainly get facial burning when things are at their worst.

[MajorSky1]

That makes sense. I've hit some trigger points before that lit up the spots in my feet, so I associated it with the trigger points. But central sensitization makes sense.

http://www.instituteforchronicpain.org/ ... sitization

[SoothingSpaces]

Thank you. Good information ... Demystifies it for me. No fun though. No fun at all.