jg6075's Case/Rambling Story

[jg6075]

Thanks!! That helps a ton, you made me realize I'm actually on track then. Guess you just gotta keep moving forward and focus on the positives. Thanks again.

[European]

The copying with flare-ups is one of the most challenging tasks in this struggle...I perfectly know this feeling of emptiness when a bad flare-up strikes back after quite successful period of recovery/better time...Sometimes it seems that all the effort was waste...I had very good first four months of this year, but now struggling more than 3 weeks...Pain in scrotum, penis, perineal area...still fighting with some trigger points in the ischiocavernosus area, which are in my opinion the initial ones...the ones which triggered all the cascade of suffering (after prolonged sex/masturbation). Things were never easy. Good luck for all. Great forum.

[jg6075]

Just a quick update and question. I've been steadily improving. It's really subtle and slow moving, but I feel like pain is not as much of an issue in my conscious thought processes as it used to be.

BUT, there is one exception: physical activity. To keep things at bay, I can't really exercise, which is frustrating to me. Even a 30 minute walk can trigger a minor flare-up. Extending standing is also problematic, and also triggers back pain in addition to the usual CPPS symptoms. Is this normal? It's one aspect that feels really limiting.

[Caedar]

Any physical activity causing a flare-up might be related to anxiety. When the body feels threatened, it uses pain as one type of warning. What kinds of symptoms do you have when you walk around? Have you tried various types of exercising, like swimming?

Extended standing can absolutely cause symptoms because it activates your core muscles. Consider trying some core exercises that no not put excessive pressure on the pelvic floor: http://www.pelvicfloorfirst.org.au/page ... ises-.html

[jg6075]

For me, any exercise doesn't hurt when I'm doing it, but rather hours later... which is what happens with a lot of people from what I've read. In my case, walking has been triggering the classic perineal nerve pain along with the occasional 'wind out of your sails' lower abdominal pain. It's not debilitating but it's definitely annoying. It's kind of funny articulating the pain in writing, because I've grown so used to it that feels 'normal' in a way.

I have no doubt anxiety contributes a ton to symptoms, but one of the best ways to alleviate anxiety is exercise... which leads me in a circle haha. Thankfully, I don't freak out + tense up when I get pain anymore, which is one of the most important things I've learned.

When I did physical therapy, my therapist did suggest low impact activities such as swimming or yoga in lieu of jogging or lifting, so maybe I'll look into that in addition to integrating some additional core exercises into my routine. Thanks!

[jg6075]

Just a quick question and observation:

I'm frequent noticing the following things happening together frequently: increased nerve pain + muscle aches all around, sensitivity to cold, abdominal or stomach pain, and occasional fatigue. Anyone familiar with this pattern or what it could be? It's currently crushing me right now and I'm finally noticing it as a pattern.

[webslave]

Yes, very familiar, sounds like what I had, fatigue is part of CFS linked to CPPS (CFS symptoms include things like cold sensitivity and muscle aches), also fibromyalgia is linked to CPPS in many patients. Do some research on CFS and Fibro and you'll see what I mean.

[johnnyblotter]

That chart has been accurate for me as well. I often feel like I'm on the verge of the "next level" of feeling better, only to go into another flare up. It is certainly frustrating.

You have a good attitude and seem to be approaching this really well. I have been all over the map with what I've tred but have had to learn to have some patience and accept that healing happens slowly.

[jg6075]

Just some observations I've noticed about myself over the past year or so, I'm curious if anyone has been in the same position I'm currently in or has some insight. I'll start with the positives over the past 18 months:

• I've managed to take out the emotional component of the pain. I don't ruminate on things, I keep my cool and prevent flareups from ever truly developing. I don't have doomsday thinking for the most part... although sometimes when I'm down, I get close to thinking negatively.
• CPPS isn't on my mind all the time anymore, and it's more like a high level annoyance than a life ruining thing.
• I feel like I'm verrrrry slowly clawing my way back from limitations caused by CPPS
• I don't have genuine moments of agony that often anymore.
• I went through several months of pelvic floor physical therapy.
• I have not taken a single opioid or similar such pain medication for around 2 years, and haven't really felt the need to

---

While that looks like a lot of improvement on paper, I feel like I'm plateauing a bit or not doing enough to cure myself. Progress has been moving at a glacial pace, if at all. Sometimes I worry I'll relapse back to where I was a few years ago. I still feel like I have a lot of unanswered questions and my best mechanism towards recovery has been to just flat out not think about it at all. Sometimes I feel clueless or that I've exhausted all my options and this is as good as things are gonna get: much better than previously, but still not great. Anyone have any insight?

[webslave]

Setbacks, flare ups, graph of decreasing amplitude
viewtopic.php?p=43794#p43794

Patience is a virtue It takes a long time, but there are sudden "jumps" of improvement after what seems to be ages of stagnation.

It may be time to review your strategies. Adding another component may help, e.g more moment-to-moment relaxation (consciously dropping the pelvis), taking some time out every day to meditate or listen to very relaxing music (Dr Jeff Thompson's stuff is excellent), adding some exercises (daily walks) or stretches into the mix, steam baths, long hot baths, quercetin, Elavil, valium, etc etc so many things you can try to tip the balance in the direction you want to move. Just think it through carefully, look at my Amazon shop (link in my signature) for ideas (I get no fees or commissions from what you buy there), and read more here for tips and ideas.

[jg6075]

Thanks, Webslave, I really appreciate the continued support. It sounds like moment to moment relaxation and less emphasis on the 'big picture' is the way to go. I think long walks are wonderful, but my question is: do they agitate the pelvic nerves and muscles at all? When I do them, I feel like I come close to agitating things sometimes. I'm not sure if it's a posture issue or what, but those sort of things make me wary of exercising and getting out of my comfort zone.

[webslave]

I started with short walks, no more than 20 mins to ½ hour to begin with, and moving to 50-60 mins after a year or so.

[European]

Walking and swimming are generally the most beneficial activities, at least according to my experiences. They are even safer than some PT action, e.g. squats might be dangerous, despite they are both in Amy Stein book as well as in Headache in the pelvis. I am also struggling with flare-ups and sometimes you never know what was the trigger... I will add more in my case report soon.

[jg6075]

I see. Short walks have always helped for a variety of reasons and can clear your mind for sure. I'm assuming swimming works the same way. My physical therapist also recommended yoga. Yoga sounds intriguing and I already integrate some stretching into my routine, which leads me to my next question:

This has been annoying and confusing me for ages: whenever I do stretches for CPPS, it seems like doing the ones that involve lying flat on my back make me feel dizzy and weak afterwards. Not every single time, but a good chunk of the time. Is this related to CPPS in anyone's experience, or something else? I'm trying to hammer down all these sorts of weird things I've been half ignoring for awhile.

[webslave]

whenever I do stretches for CPPS, it seems like doing the ones that involve lying flat on my back make me feel dizzy and weak afterwards.

Could be orthostatic hypotension
https://en.wikipedia.org/wiki/Orthostatic_hypotension