My Story (Etaoinshrdlu's case)

[carld]

I play bass and guitar and sing in a few bands. I keep busy. Which is not always healthy for us types, I know. Forgot I'd made the old posts. Figured I'd just make an introductory one instead of just talking about pieces of the issue.

I play slamming drums and compose music on my piano in my home studio which means sitting...At my worst I did have to back off and take a break and start healing...You may have to do the same. As you slowly progress you can get back into it....There is never any reason to allow UCPPS to control your life as long as you continue to push ahead and learn to control your anxiety and or OCD...Reading your posts there could be that element you need to treat to go along with the protocol to heal....But never ever stop doing what God put you on this earth for...We artists suffer in some kind of way everyday which allows us to feel what it is we create...That could be a good and bad thing...It come with the territory. You will recover for sure!!!

Best

[etaoinshrdlu]

I did internal work last night (without the wand) and woke up this morning feeling great, but after an hour of being at work, there's an absolutely excruciating pain in those muscles. True pain is a new symptom for me, not part of what I've ever experienced before, even after doing internal work.

Anyone have any idea what might have happened?

[carld]

1 step forward and 2 steps back...You just hit some tight spots (trigger points)that are acting up I would presume...

Best

[papichullini]

I have a problem with that... Once I do internal work every day (morning shower), when I have a flare up, I never know if its because of the massage or something else...

Another thing that is happening is that I found some sore muscles around the coccyx... I worked them out... They improved... But now its look like they are in pain again even if I kept working on them... They went from almost free of pain to pain... Even working them out everyday... Why is that? Any clue?

[webslave]

Papichullini, you are an amateur attempting to self-treat, which is a hit-and-miss affair at best. And it looks like you believe it can be improved simply through manipulation, without moment-to-moment relaxation work on the pelvis. It's not surprising that you are having flares.

[etaoinshrdlu]

The pain ended up going away shortly after I posted this, as mysteriously as it came...

[etaoinshrdlu]

Since discovering that my "prostatitis" is actually muscle tension -- my pelvic muscles are so tight that it's getting more and more difficult for me to start or even continue urinating; sometimes it's almost impossible unless I'm in a secluded bathroom with the lights off and I have ten minutes to relax (my extreme shy bladder doesn't help) -- I've been wondering if my leg issues are related or if anyone else has something similar?

A year and a half ago, I was super-active, despite my CPPS. I did martial arts; I jogged; I rock climbed. But a few mild spinal injuries -- one from karate, one from a car accident, and one from a mosh pit -- kept me from rock climbing and might be responsible for the fact that sometimes my legs tense up so much that even walking for a half hour is excruciating (and sometimes I can go to shows and bounce around for four hours and just feel a little tired). I've got a protruding cervical vertebra and a very small syrinx (a hollowing out of the spinal cord) in my lumbar area. The former definitely causes pain and occasional tingling; the latter I've been assured is too small to be clinically significant, but I'm wondering...

If spinal cord injuries can cause muscle tension syndromes, why couldn't the lumbar syrinx be responsible for this apparent worsening of at least the urinary difficulty component of my chronic prostatitis / chronic pelvic pain syndrome as well as the tension in my legs?

Anyone else have other muscular manifestations of tension and pain, and/or spinal issues?

[webslave]

Could be proctalgia fugax.

[webslave]

Spinal cord injuries can certainly affect the pelvic muscles and organs via nerves. Rodents given spinal cord injuries experimentally (via deliberate viral infections) show bladder inflammation. There are other studies that support this concept. Szolcsanyi stimulated the spinal cord nerves in a rat that correspond to the bladder nerves and was able to create a neurogenic inflammation (that is redness, swelling in the bladder/vaginal opening and other pelvic organs). Lavelle stimulated the sacral ganglia and increased the permeability of the bladder lining in a rat to water and urea. Therefore, by this mechanism, stimulation of the pelvic floor muscles can create the bladder wall changes. In other words, nerves and muscles can affect the genitourinary tract! More recently, Apodaca et al have shown how nerves can disrupt the bladder lining, and there are studies showing how stress can cause inflammation in mammalian urogenital tissues. So that's possible, and in the same way muscles can be made painful. I know my 2005 injury to my lower back (ruptured disc) resulted in pain to my upper buttocks, side of right buttock, pain down leg and even foot. So pain can be created by the inflammation of nerves around or inserting into the spinal cord, but not "muscle tension syndromes" per se.

In your shoes, I would proceed on the basis that your spinal issues are not causing your bladder issues, which are clearly linked to shy bladder, a long-standing issue with you, but could easily be causing lower leg pain. In fact, UCPPS does not cause lower leg pain, only upper leg pain (sometimes).

[etaoinshrdlu]

Interesting. I definitely experience upper leg pain coincident with CPPS. What's frightening me is that even at home, in a completely relaxed environment, urination is becoming more and more difficult. Shy bladder probably just complicates it. Sometimes I almost want to give up, but I know that holding my urine is how I got into this mess to begin with. However, the chronic prostatitis / chronic pelvic pain syndrome was there long before the spinal cord injuries -- I just never had a problem peeing (shy bladder excepted). I used to go out to a show or something almost every night, even when the leg issues began, because EVENTUALLY I could pee at the venue if I relaxed enough or at least stop at a gas station; now I'm staying at home a lot more.

http://www.spinal-injury.net/sci-pain.htm

This does say that muscle tension can be a complication of SCI.

However, something else that's changed is that I've almost completely eliminated caffeine, which I know can be a bladder stimulant; so perhaps the massive caffeine intake I used to have allowed me to urinate more freely? And now that I mostly drink water and the occasional caffeine-free soda, the urgency is dramatically reduced?

[webslave]

You should have a cystoscopy to assess your prostate and bladder, and/or alpha-blockers to help with urination. That degree of difficulty with urination is not part of UCPPS and should be treatable by a urologist.

[etaoinshrdlu]

I tried alpha blockers. They gave me fierce, intensely painful acid reflux despite the fact that I was taking Nexium twice a day and Pepcid at night. Burning mouth + burning stomach = who cares if I can pee or not. My GI guy basically said that anything that relaxes one sphincter will relax the other. I've had a cystoscopy and my bladder looked normal; in addition, when I was in California, Dr. Smith looked at my prostate with the ultrasound and it was fairly small, not enlarged at all. He blamed my pelvic muscles...

[etaoinshrdlu]

Sounds about right.

[webslave]

Go back on an alpha blocker but do not lie horizontal. Try raising the head of your bed by 6-10 inches. Slide blocks or books under the legs at the head of your bed, or place a wedge under the mattress. Tilting the whole bed works better than trying to sleep on several pillows.

bedIncline.gif

[etaoinshrdlu]

My GI guy doesn't think I can take alpha blockers no matter what. I've tried elevating my bed in the past. But with Flomax I had horrible reflux just walking around, sitting at my desk, etc. Nighttime reflux was not the only problem. And I can't always be in situations where I can elevate my bed... With me, reflux is way worse than probably the typical person's. Also, just to annoy me, perhaps, my symptoms dramatically changed TODAY such that urination is much easier but incredibly frequent. Oh, this tricksy chronic prostatitis / chronic pelvic pain syndrome stuff.

But normally it's incredibly difficult. Are there any other standard medical therapies short of catheterization? I am trying to do the Stanford/Wise-Anderson Protocol thing in hopes that it will help, but obviously it will take a very very long time to work.

[Edit]
It doesn't seem like people have as many GI complaints with uroxatral... might be worth a try.