My story of the road to CPPS - MajorSky

[webslave]

Even the soles of my feet are burning ...

That's quite common in CPPS due to crosstalk of nerves. In my case, I used to get hot "patches" of skin near the ankles.

Nerves are weird things.

[SoothingSpaces]

Headache book arrived! Woo hoo :)

[MajorSky1]

I have a question that I'm hoping webslave, or any other veteran might be able to help with.

The past couple of visits to the PT showed much improvement with Trps, and tightness. She said it was the best she'd seen it so far, and that she was very impressed with my progress, and that I'm right where I should be. I asked if we'd be wrapping it up around Christmas, she said "before that." I have done my own therapy every day between visits to her, and I see her once or twice a week.

I do notice that the pelvic floor area that I can reach is much more loose and supple. I have one stubborn twingy spot toward the front right still, right around the nub of the pubic bone next to the urethra, but I'm not even sure if it's a trigger point. And then, I also have the tailbone pain and I try to work out the TrPs on both sides of the tailbone, but most of the time there's not really too much tightness there, and when there is it releases quickly. I'm not sure what's going on there, if maybe it's some kind of torn connective tissue that's causing the pain. And then there is still occasionally some dysuria after urinating, though it seems more often absent than present these days.

So with everything loosening, and much fewer TrPs, I'm just wondering - is feeling "better" a delayed reaction? Does it take a while for a feeling of "better" to catch up? Granted, I've been assaulted by big long lasting waves of anxiety and that DOES seem to nix most of any well-being feeling I may have briefly had. However, today will be dose 4 of Lexapro, so I'm hoping in a couple weeks, the anxiety, nausea, and depression diminish a bit.

I still have peripheral aches in the groin sometimes, and at the base of the penis, that weird deep dull ache. It will come on for a while, and then just sort of fade.

Is feeling "better" or feeling "good" delayed after the pelvic floor is much more back to a state of normalcy? I'm trying to determine if I'm on the right track because I think I've done everything right, and Tammy thinks I'm in really good shape with improvements. But I still feel a little wonky.

[webslave]

This really is a condition where improvements come slowly, and then quickly, and then get a bit worse, and then more improvements slowly, and then a sudden "phase shift" in the level of pain to a lower level, and then sometimes years at a low level (e.g. with me) and then one day you realise you haven't had pain for a long time. It's like that for many of us...

[MajorSky1]

OK, got it. I just wondered if the way the pain moves is indicative of where you're at. For instance, the pelvic floor is much better, but then peripheral aches on the fringes still exist, mostly at a lower pain level.
Thanks!

[Caedar]

Your mind will focus on the areas of most pain or irritation. This is the basic action of counterirritants (menthol, capsaicin): they distract you from pain elsewhere by being irritants themselves (they do, however, have other action, but let's ignore that for now). So yes, you might have multiple areas of pain at once, but because one is a 6/10 and one is a 3/10, the 6/10 will be noticeable and the 3/10 won't--until you reduce the 6/10.

[MajorSky1]

Ok. Yes, I have noticed that. I'm trying to figure out though, if the areas of pain start to relinquish more in the center of the pelvis, such as the prostate, and the perineum, and gradually become more just pains out on the periphery. For instance, over the months, my perineum pain has been reduced to about 98%, with just an occasional blink of a sharp anal muscle spasm. However, I have that tailbone pain, and some muscles under the glutes, and a couple of occasional groin aches that come and go. Seems like the pains are traveling farther away from the middle, like the ripple ring on the surface of the water. The level of pain is not as intense as the pains once were toward the center.
Just wondering if it might have something to do with the way the nerves or muscles heal.
But perhaps those were there all along (with the exception of the tailbone).
It's probably pointless to try to figure it out, but if somebody eventually hits on something that seems to be true for just about everyone that hasn't been brought up before, then how will we know?
On a side note, 4 days of Lexapro have made me a nauseous zombie. I've been trying to put my shoes on for a walk for 4 hours now. They're still not on my feet. Really hoping this zombie and nausea state fades within a few days like they say it will.

[webslave]

It takes a while to adapt to SSRIs. See how you feel after a month.

[MajorSky1]

Yeah, nausea is not as bad this morning.

So I've got a sensation in the b-spongiosus area that is still a bit of an ache, yet there's something different to it. I can't call it an itch, but it's like a tickle along that section of tissue, and maybe over to the cavernosus, and also right into the tissue where the urethra is nestled in the spongiosus (sorry if I've misspelled...). If I palpate or massage the spongiosus, it's like there's an itch in the tissue that I can't scratch. Sounds weird, I know. I'm wondering if that itch/tickle sensation means that tissue or nerves are healing, repairing. Has that been observed before?

Usually, itching with wounds can mean healing.

[webslave]

Tickle sensation can be associated with fasciculations. Good sign.

[MajorSky1]

I'm trying to NOT ask any repeat questions, but sometimes there are different angles and aspects.

1) I've read that yellowish semen is an indication of high white blood cell count from inflammation. The main site says this, but then says it's not from the prostate(?). So if there is inflammation, and the prostate is not the cause, what is causing the yellow tint/white blood cells? Cowpers gland? Testicle? The main site says "subtle" inflammation. My prostate does not feel inflamed, yet there is a yellowish tint, even after ejaculation 2 or 3 days in a row, though less so. Hoping someday it will return to a clean white again.

2) Is the painful spasming, cramping around the top of the cavernosus (just below the pubic bone) upon ejaculation something that will, over time stop happening? Is it an inherent part of CPPS that eventually goes away? Or is it something that has to be trained? It's happening regardless of being very relaxed upon ejaculation.

3) The occasional twinges that feel like being pinched hard with tweezers for a few seconds in spots around the pelvic floor, that's a normal part of CPPS, correct? Is it indicative of any stage, or not?

4) Is it common to absolve a lot of the pelvic floor tightness, and trigger points, and still feel like crap? Also, is it common for the tissue around the pelvic floor to just feel a little sore, like it's been beaten up?

5) Obviously the pain comes first. After chronic pain comes anxiety. But is it a normal progression to start to feel like the anxiety surpasses the amount of pain, exponentially? I have waxing and waning pain all day, often the tailbone especially gets super uncomfortable. But the anxiety seems to be even more painful than the pain. Does that make sense?
I have a friend who had chronic pain for over a year, and she said everything I'm going through is normal for chronic pain. Can anyone qualify this?

6) Can anyone who has had bad anxiety, and withdrawn from this, and is now cured and better tell me if you really do get back to your normal mindset, without feeling crazy, withdrawn, hollow, and depressed from the pain and anxiety? I'm starting to feel like I'm never going to get back to that normal state of mind where pain and out of control thoughts dominate, and where things like birdsong, crickets, lawnmowers, etc. don't grind on your nerves, where they're just background noise of life instead of annoyances because pain and anxiety have you over sensitized.

7) Why does it take so long to recover and get over this condition? The body usually heals more rapidly with almost any other disease. Is it because there is actually nerve damage? I understand about the cyclic pain feeds anxiety, feeds pain, etc.

8) I haven't googled it yet, but are there foods that help reduce cortisol? Or adrenalin? Or any other stress hormone? I don't know if my hormones are out of whack, but it feels like I have very low serotonin, and high cortisol, adrenalin, and the like. That doesn't mean that's true, but something feels stuck. Waking up out of a decent nights sleep and going right into involuntary catastrophizing and worrying, which cause nausea, is not normal for me. I'll wake up, and for a few seconds to minutes, lay there and feel ok - then my mind, on it's own, finds something to worry about and goes off on a half-sleep dream where something goes wrong in the dream. Often it's about my son, or something bad happening to someone I care about. I strongly believe it is a by-product of pain that has caused an over anxious state of mind. The thing is, I can't seem to control it. I've been trying meditation, walking, distractions, relaxation CDs, nothing seems to help.
It's been on and off like that since November. But it's been more consistent since the tailbone pain started about 8 weeks ago. And for 3 weeks now, it's been very consistent, and very intense - even after trying Lexapro at 5mg for a week (which isn't really enough to do much, I know).

I'm just putting these questions out there. If no one feels like chiming in, no worries. If so, then great!

[Mountainmac]

About the anxiety, I had it also, it faded away as soon as the global pain-level started to drop to 3/10. Had the same questions about cortisol etc. Woke up nothing wrong en then BAM after a few seconds or minutes all symptoms back again. Remember shaking like hell during shaving etc.

I didn't have this before and now i don't have it anymore.

[MajorSky1]

Thanks Mountainmac, that helps to know.

[webslave]

1. You need to read this page more carefully https://ucpps.men/chron ... condition/
2. Yes, all pain can fade with time, depending on how you treat the condition
3. Sudden stabbing pain is not common in CPPS
4. Resolving trigger points ... how do you know you've done that yet?
5. No, anxiety precedes the pain
6. Of course you can get back to normal, many men have. You are a particularly tense and hypervigilant person though, so it may be a little more difficult for you
7. Because this is a psychoneuromuscular condition: multi-faceted, complex, ingrained.
8. http://www.doctoroz.com/slideshow/corti ... ocery-list

[MajorSky1]

I already know the prostate is not the cause. But there was a post and a response somewhere about yellow tinted semen being a sign of inflammation.