Painagain thread

[JoVoChicago]

The upside of that is that it did go away for 4 years before - which proves that it can get better and will.
As a matter of a fact - that even gives me hope.
I'm improving steadily - but - far from being "better".
As for the lying down thing.
For me - staying in any one position for too long increases the pain.
I sit for awhile, stand for awhile, pace for awhile, lie down for awhile...repeat.
Now that the weather is getting nicer - slowly strolling around the neighborhood is my most painfree state...next to floating around in my hot tub.
Now that I have my stretches down from my PT - I'll stretch out as much as 10x a day...slowly - gently - not a ton of repititions - but it really helps - I even have some that I can do in bed - and do them before a go to sleep at night and when I wake up before getting out of bed.
When I do my Breathing Exercises combined with my stretches - in bed - there are moments - even hours - dare I say - that I have ZERO pain.
But I do know what you mean - waking up with that thought hitting your consciousness of another day of chronic prostatitis / chronic pelvic pain syndrome stretching out before you can really kill your spirit - it's important to have positive things planned for each day (no matter how big or small) - and keep them written out on paper on your dresser - and try to click into that mode and focus on those positive things - some days are way harder than others - but other days - it's like just flicking a switch.
atleast that's my experience.
Good Luck.
Take care...
Joseph

[painagain]

I don't understand the whole muscle spasm thing. I wake up in the morning and as soon as I get out of bed, I feel bloated in my pelvic/bladder area. Then before too long, I get pain in my left upper bladder area - as though something is pushing on it from the inside out. Not too long after that, I get the golfball in the rectum feeling which turns into significant pain. For the rest of the day, I will feel significant pain in my bladder and rectum. But it is not a shooting pain - it does not pulsate - it's just bad pain that is almost always there.

When I think of muscle spasms, I think of pulsating, shooting, there then gone - but none of that happens with me. Is it still muscular for me? How can it be muscle spasms if it is constant?

[Jay]

Hi there,

You're asking a difficult question because, where pain is concerned, everyone will describe the sensation differently. However, it is possible in a number of conditions (CPPS included) to have chronic spasm. The muscles basically crunch up and then never let go, so there's no variance to be noticed. Over time, these muscles shorten and you end up with new problems. That's also why you tend to flare up initially during physical therapy -- the therapist is forcing the muscle to release from a tightened position to which it has become accustomed.

Personally, my pain doesn't pulsate, either. I just happen to have many other descriptors for it. I know when I'm flared up and particularly tight because the constriction will begin to bring on more severe neuropathic symptoms. Once I get the muscles to loosen up again (through a hot bath and internal work, or muscle relaxants, etc), it eases off.

The only way to really know for certain the state of your pelvic floor is to see a qualified physical therapist. You don't have to go to the Wise-Anderson Protocol clinic for that. Any therapist who is educated in the treatment of the pelvic floor/chronic pelvic pain should easily be able to discern muscle spasm. Both my PT and my pain management doctor could spot mine practically the moment they began their internal examinations.

[painagain]

Jay - how often do you have internal PT done or do it yourself? Do you feel better once it's done?

[Jay]

Hi,

For financial reasons, I have not seen my PT in some time. However, I continue to treat myself, generally doing a bit of work on a daily basis. Internal is easiest for me during the hot bath I regularly take each afternoon. My schedule might adjust a bit if I'm going through a bad flare. Yes, it does help.

I can say that, had I not gone to my physical therapist, I would be working blind and probably without much success.

[gmccormack]

painagain,

From the standpoint of having spasms I can tell you what they are and feel like. For example last night when I got home my pelvis was mildly sore I leaned back and streched it with my hands on my back, as I came back to perpendicular my penis started spasming just like you calf would after a long run, I leaned back again and the same result occured, no pain anymore on spasm. I always get a spasm in my pelvis after very hot baths. There is one an only benefit, I know chronic prostatitis / chronic pelvic pain syndrome is predominently a muscular issue, I have stopped searching for answers which has given me peace that I desperately needed.

Jays description is quite good, muscles especially when in heavy pain states can be chronically clinched up, so you may not get spasms, I didn;t when the pain was really bad in the beginning.

I would see a PT, hopefully there is someone skilled in your area, I find that I need to see someone to give me a night off from doing it myself and he is frankly better than me.

[painagain]

Sometimes when my pain is in a really bad stage, Ill feel (and even hear) gas rumbling in or around my prostate/bladder. It's almost as if there is gass trapped in that area. Before I had CPPS, I never had gas or any rumbling in that area. It's not like the regular gas rumbling around in one's stomach or colon - it's definately in the prostate/bladder area. Does anyone else have this? Why is it that chronic prostatitis / chronic pelvic pain syndrome causes this gas to build up in an area it never did before?

[webslave]

Sounds like IBS, which has a strong association with CPPS.

[johndobson]

I have a weird sensation where in the mornings on waking it seems as if my whole body is shaking. I was told by someone that shivering is a well known indication of a bladder infection - but I do not have one. I have no refernces for this. Also I get 'lip wobble' in the day time sometimes. I do not mind being crazy...just wish it was not so uncomfortable.

John

[JoVoChicago]

I get the trembling thing at night as I'm trying to fall asleep.
I've located it and find it is coming directly from by Pelvic region.
It's pretty bad sometimes - actually shakes the bed to the point that my Wife can feel it.
However - when I initially posted about this - webslave suggested Magnesium.
Ever since I started the Magnesium - I'd say the trembling has gone down about 80%.
It usually comes now only when I've had an overly stressful day, over - or - under worked my PT regimen or generally didn't follow my self management "rules".
My PT insists that one day this will all be just a bad memory - and as long as I follow my management protocal - my pelvic problems will go from life altering catastrophies to minor annoyances.
It's still too early for me to really totally believe that - but I'm going on hope and faith here.
The past couple of nights - my sleep has been horrible because i'm getting up to urinate 5-6 times... feeling of urgency... however - I am peeing - full pee's.
Trying to figure out the what's and why's of this is like trying to figure out why we're here.
Who knows?
During one of my pee's last nite - I was feeling sorry for myself and pretty upset - then I remembered that this was the first time this had happened to me in months - it was near constant before.
It's easy to forget our improvements.
I went back to bed - feeling kinda happy - stuck my stresseraser on my finger and did some deep breathing exercises and was off to sleep.
It's important to use the tools at our disposal.
Thanks,
Joseph

[atma]

I'll have to back Jo up on his reference to the Stress Eraser and the Magnesium. Mg is a very good muscle relaxer, but as I said in a previous thread, finding the right Mg compound depends on each individual's body.

Onto the stress eraser. . Once I found that my condition paralleled CPPS, I started trying all the gimmicks and such. Like most, I was looking fro the quick fix. I never found it, but I did find the Stress Eraser or similar products, to help me. It has helped me relax at times when I was about to blow. It was a chore at first, 20-30 minutes just breathing. What a waste of time. Monitoring the natural rhythm of your breathe is very comforting. At first, I could not get that sine wave to look pretty. I was like, "All these friggin one dots, damn. After some research and some practice, I get the two and three dots quite often. I am still learning those. My dog starts barking or something in the background, I am easily distracted and I need to spend 5 minutes getting back to my "Happy Place". It has also helped with my yoga classes where breathing is essential to hold certain poses.

For a lot of us, this is a very emasculating condition AT FIRST. As I re-read this post, I talk about breathing, poses, yoga, etc. Add the finger in the butt, and you got yourself a very weak image of a man. As we all proceed at our own rate, we realize we are a better man for facing this condition head-on instead of ignoring it or cowering in a corner. It is a battle most men could not face and win without resorting to using the tools provided in this forum.

At some point in your recovery, switches start clicking, and things that were so far-fetched at one time, become easier to grasp and sometimes second nature. I still have a long way to go before I consider myself "Managing CPPS", but those switches are closed and my good days are accumulating faster and faster.

You don't lose your old life, you just live a different life. It is neither better or worse, just different.

. 02 cents of info...

See ya,
ATMA

[JoVoChicago]

I'm pretty sure the Stresseraser is on sale at Amazon right now.
Check it out.
Also: To people who have a Discover Credit Card - I traded in my Reward Points for several Brookstone Gift Cards - and got my Stress Eraser for free from them.
So - there you go.
I use it almost everyday.
P.S. - yes- this whole this is pretty emasculating feeling for Men - I think women who have PFD may have an easier time with this - they're used to Mammograms, Pap Smears, talking with their Girlfriends about their periods.
Perhaps there is something for us fellas to learn from all of this.
Joseph