My story of the road to CPPS - MajorSky

[SoothingSpaces]

I am sitting on a heating pad right now. Good stuff. Melting the golf ball haaaa

[MajorSky1]

So, don't want to jinx myself but I think I may have crossed into, or be crossing into the shift that happens with this.

Over the past week I have gone from days being a 6 (scale of 1 to 10, with 10 feeling totally normal), with a present pain that is there but doesn't affect ability to do things, to a 7 (last Thursday) where there is still some residual pain but it seems to affect me even less, and seems slightly diminished. Checked my pelvic floor for the first time in a few days, and to me, it feels 90% back to normal with some faint left over achy burning in the old spot, but very faint - might even be normal. Tailbone area pain on the right side is still an issue, but seems to be slowly resolving.

Woke up this morning with a very precise sore spot on the surface on the left side of the upper inner butt cheek, but after poking around and feeling like it was almost in the skin, looked in the mirror and it appears to be an ingrown hair - probably a reaction to the icyhot I've been applying to the area. Whew! That means it will clear up quickly, and it's not a deeper problem.

I'm now on 7.5mg of Buspar (buspirone) twice a day, and I do notice a subtle difference. I like it because it doesn't change anything drastically, but does give me a floor so that I don't fall into the anxiety hole. After a couple weeks, Dr will probably up dosage a little.

Keeping fingers crossed, and walking a total of about 7.5 miles a day.

It's taken a long time, but I do feel like things are slowly and steadily resolving. Most urethral pain is gone, but there is still occasional soreness, and still soreness after ejaculation, but it's not as intense and long lasting as it used to be. I'll check in later with updates or changes.

[webslave]

Good news! Buspirone is an alternative to benzos and high dose SSRIs for anxiety (I should mention it more often).

With the 7.5 miles walking, is that because you are trying out this technique?
viewtopic.php?f=37&t=8448

[MajorSky1]

I just walk a lot because it makes me feel better. The pain usually fades as I walk. The anxiety does sometimes too, but the anxiety is less recently. I figure exercise promotes circulation. Circulation is good, and promotes certain kinds of healing. Good for the heart too.

[MajorSky1]

I must say, it is a very cruel condition that can let you feel a lot better for a few days, and then seemingly start up anew one morning with the package deal of pain, then anxiety. I felt pretty good last night. Then a resurge in pain in the pelvic floor this morning, but couldn't really find tightness, did however find sore tissue. Tailbone has been low for a few days, now back. Nausea is threatening.

I guess this is the way it goes so dealing with it. Not sure what triggered it. Could have been a couple hours of driving (with travel pillow). Could have been the DQ Blizzard (doubt it).

Still hoping I'm getting closer to the shift - really seemed like I was for a while. Onward.

[webslave]

It's a slow process, usually.

As you know.

[MajorSky1]

Yeah. I'm ok with that. Still a lot of symptoms have improved, so that's good. There is definitely a trend toward healing, but it is terribly slow. Maybe slower for me because I've been hypervigilant. Been working in that. Tomorrows a new day!

Thanks for the graph link, I was looking for that.

[MajorSky1]

OK, I promise I'm not writing this in an OCD, or panic mode. I'm just writing as an inquisitive individual, and just giving an update on my situation. Also, I'm a writer, so I like to write. I enjoy it. I'm currently working on a novel, so typing up a long post seems like no big deal to me.

So yesterday I felt like hell, probably in the realm of 3.5 to 5 (on a scale where 10 is feeling good an normal). I become useless at about a 4. The day before (Monday) I was a steady 7.5.
My pelvic pain seemed to re-surge yesterday, with soreness that I hadn't had for a couple months, and mild pains I've had recently seemed louder (neuronal windup?). I spent the day mostly on my bed, trying to just wait it out, let it pass, trying to prevent anxiety from getting out of control. What helped is that I've been through this several times (maybe many times) before, and even though there have been times where it's lasted 2 to 3 weeks, it eventually subsides. So I just kind of got through the day, took it easy. Just did my morning walk. Did some of my own pelvic floor PT.
Somehow (maybe with the help of buspar) I managed to keep the anxiety from getting away from me, and nausea only hinted at coming on when pains would flare. For me, it truly is the pain that starts all the trouble. I know that anxiety can start the pain, but for me the pain honestly seems to come first, and less from "anxiety" but more from a possible neuronal windup, including stress (which is not exactly the same as anxiety). My point is that I can go about my business feeling fine until the deep pain kicks in, usually seemingly out of the blue, and then triggers the cascade of other things. Could be that my perception is off, dunno. But lately I've been trying just to keep myself occupied, and distracted with good things to steer my brain away from being hyper-vigilant, and though it's not always a piece of cake to accomplish, it does seem to help.

This morning I woke up feeling almost no pain, just a couple very mild aches in the usual spots. I usually wake up for the first minute or two feeling OK, and then the pain usually appears. This time it wasn't appearing. However, I felt shaky from lower back down and all through my pelvis, even in my legs. Something didn't feel right at all, almost flu like without the flu. I'm guessing anxiety related, or more neuronal windup. It was like my mind was looking for, or expecting the pain to be there, but it wasn't. It felt like my subconscious was confused. I forced myself to get out and go for my 3.5 mile morning walk. I did some crying as some emotions welled up, but I let it out. As I walked I started to feel the jumbled thoughts subside. By the time I got back to the house, I felt a lot better. I had a 1/4 cup of coffee, hopped in the shower, checked the pelvic floor and it seemed just fine, and currently I feel much better. The damn tailbone area is still sore, and makes it hard to sit, but otherwise things remain calm, and my thoughts are clearer.

What is hard to comprehend, and what I find a little creepy is how can I go from feeling so hellish one day, and then feeling quite a bit better the next? How can it go from feeling like an M80 went off in the pelvic floor one day, to almost like nothing happened the next?
I don't think it's ever turned around this quickly before, where I've had a one-day flare. Usually they last at least 2 or three days, to a week a or more. Keeping fingers crossed that it's a good sign of progress in the right direction, and that the rest of the day remains smooth. Eventually, I would hope to have more good days, than bad in a week or two's time.

I would like to start consistently waking up with a clear head, no anxiety, no deep pain, no nausea and feel good about the new day again.
If I still have this tailbone pain in September when I see my Uro again, I may opt for an injection at the pain clinic.

[webslave]

I don't think it's ever turned around this quickly before, where I've had a one-day flare

That's because you are now using strategies to combat the pain, and you have some insight. From now on you can be confident that this pain is vulnerable to the various techniques you are using to combat it, and the feeling of panic need not assail you. That's the start of getting on top of it.

The pelvis is the seat of our emotions. Many people express unhappiness and tension in their pelvic muscles, and I think you are one of them. That's why I also recommend psychotherapy if there are emotional issues. Cognitive behavioral therapy is good, or for the more intellectual patients, someone like Alan Watts can be very helpful (you can torrent his mp3s for free).

[MajorSky1]

So true.
Thanks, I'll check him out. I think I started to a few months ago but the torrent thing was giving me fits. I'll try again.

[MajorSky1]

Just a check in update.

Over this week, the pain has changed - which as I know, it does with this. Tuesday and Friday were not so good days being around a 4 and 5 out of 10 (with 10 feeling normal). But I've noticed a slight change in the pain a week or so ago. Now, this morning when I woke up, the change is much more obvious. It's become a sort of itch inside the tissue of the muscle, and just under the skin. It's not really like a skin surface itch, but has a similar urgent desire to be solved. I don't think it's fasciculations because I don't feel any twitching, vibration, or anything like that.
It's around the pelvic floor in spots, the groin (ischocavernosus area) but mostly around the tailbone, interior and exterior. It's especially easy to find right at the bottom of the two bone nubs above the coccyx, at the bottom of the sacrum. I wish I could shove something under the skin to itch it, massage it out.
I've been pretty much just trying to ignore pain and not parse it into categories because for the most part it's sunk in that it doesn't "mean" anything except that it hurts.
But this sensation which I can only describe as a sort of itch is very annoying because it's like it wants to be worked out, or massaged to relieve it, (You can't really "scratch" muscle tissue). It has an ache aspect to it, but the itch aspect dominates. It seems to ramp up the way an itch that doesn't get scratched does. Weird.

So this is probably just another form of allodynia, or just a change in pain color for whatever reason of which basically there isn't one (?).

I can't help but wonder if it's the kind of itch that signifies healing of nerves, which I've heard can cause an itching sensation. Probably the best thing to do though is just find a way to ignore and distract from it as much as possible so it will get gated, and quiet down, right?

I guess maybe I'm starting to learn that the only sensation to take as a good sensation with CPPS is when there isn't any. The all around quieter, the better.
Also, wonder if the itchy feeling could be histamines from mast cell degranulation.
Taking Quercetin, magnesium, zinc, and a daily vitamin though. *shrug*

[Caedar]

It's become a sort of itch inside the tissue of the muscle, and just under the skin.

I've definitely had that type of itching sensation for the past six months or so, after the real pain cleared up.

[MajorSky1]

Interesting. I still have real pain on occasion like today. But then, I'm not in bed for a week or two because of it, or with it lasting as long as it used to (knock on wood that it doesn't come back to that extent). Even the post urination burn, which went away for a long time, but is back now as the itch-ache, and more diffused outward from the urethra when it shows up. I wish I could scratch it somehow.

[MajorSky1]

Caedar,
Have you had any improvement in that sensation over that span of time?

[Caedar]

Hard to tell, really. I'm not particularly concerned yet, because the timeframe in my mind for improvement is on the same scale as how long I've dealt with the condition overall, which is a few years at this point. I expect it'll take that long to see improvement in that area, now that most of the nociceptive pain is gone.