UCPPS - Prostatitis, Interstitial Cystitis Forum

I just stumbled across this syndrome on wikipedia, I don't know if it is related to chronic prostatitis / chronic pelvic pain syndrome in any way. In the past year or so, I have developed pretty solid trigger points in the upper areas of the body, mostly the neck, and I can be very sensitive to external stimuli as is described in the symptoms of this syndrome (though I'm guessing many others here are as well). My feeling (and my hope) is that my bodily tightness (away from the pelvis) is the body's way of dealing with a highly-tensed pelvic floor, and is not a manifestation of Stiff-Person Syndrome. I think I'm just scaring myself by reading about this, but it helps to hear it from others.

Hey Kpbos,

I'm going to answer you. Not because I know anything about this, but because it can get so annoying when people lurk, but don't try to help or their comments are cryptic to the point that you can't understand what they hell they mean, or you get annoyed because their response has nothing to do with your question or they didn't bother reading the thread. My goal is to be supportive with anything anybody posts because I know how I'm hurting emotionally/physically/mentally and I know I'm not the only one. If we are going to suffer, we might as well suffer together.

Regarding your post, be careful about finding things on the internet. Someone on the IC board mentioned to me that I have symptoms of PNE and I started freaking out. Of course I don't have it. Logically, how can I develop PNE at the age of 45 when I'm a teacher and most of the time I'm standing up. I don't have tingling, parts of my body don't fall asleep. I sleep most of the time like a baby. I'm sitting now and as uncomfortable as I feel, I can stay sitting down. When I stand I feel basically normal and don't have burning everywhere. The problem is that the the thought was put there and I let myself run with it.

Even chronic prostatitis / chronic pelvic pain syndrome is a label I'm sick of. I have a bunch of symptoms that a lot of other people have, yet everyones symptoms are in some ways so different that it's more like a bunch of sub-sets of the same disease. We have some great ideas and a lot of things work, but unfortunately a lot of things work for some people and not for others. It's a crap shoot and too many people are throwing 7's.

I'm trying anything and everything. Not because I think it's going to work, but to give me a sense of empowerment. Screw CPPS/IC/PDF and all the other stupid abbreviation's of this stupid disease. I will not let it run my life.

Any sort of sustained muscular strain can set up trigger points. I have them in my back and shoulders from computer use.

Stiff person syndrome is extremely rare and the chances of you having it are minuscule.

Thank you guys, I know it was silly but I just had to hear it from someone else.

Just as a pre-emptive, the symptoms of chronic prostatitis / chronic pelvic pain syndrome correlate also with Krohn's disease, Multiple Schlerosis, ALS some muscular dystrophies and ataxia and a host of other neurologic disorders. So, if your head gets a workin late at nite you may narrow it down to 5 diseases your sure you have. (including asbestos related cancer symptoms)

Don't feel silly. You are far from the only person to worry about having some terrible condition misdiagnosed as CPPS.

I'm not a doctor, so don't take this as diagnosis, but I very much doubt you have Stiff-Person Syndrome. From reading briefly about it, it sounds like those individuals are so sensitive to stimuli, they don't leave home for fear of having debilitating spasms from things like car horns. As in, someone beeps their horn and the sufferer falls to the ground. It's not just a matter of being stiff.

Anyhow, you're not alone. I, like strobers, had (and kinda continue to have) a fear of PNE or nerve damage. I realize that it's illogical. I can sit without having to get up, I don't have numbness or tingling, no problem with erections, etc. Nevertheless, because my symptoms are a bit different than the majority, I cling to the possibility. I think it's human nature to expect the worst. The idea of diagnosing oneself with a terrible disease or syndrome is, in a way, very seductive. It allows you to slip away into depression and give up, which is much easier than waking every day and fighting to live a normal life in the face of chronic pain. It's a very difficult battle that we all face. Changing that negativity and self-condemnation is something that seems to be critical to recovery, and I struggle a lot with it.

A big step for me was to swear off medical websites. They serve no purpose but to frighten me. I ended up at the pudendal forums the other night and, naturally, left after having scared the crap out of myself. What good did it do me? None, of course. Just like reading about CRPS or all these other things, all my research did was convince me to be afraid of things I probably don't have.

There are days when I get these sharp, shooting, electric pains in the penis, and they make me panic. I immediately think PNE or nerve damage. Lately, though, I try to tell myself what another sufferer told me: you've got to live today for today. Tomorrow is another day. You can't change or even know what's going to happen, so there's no point in obsessively worrying about it.

If that seemed long-winded, well, it was intentionally so. Convincing myself as much as I'm trying to convince you. In the end, there are always options. If you did have Stiff-Person Syndrome, the symptoms of that can usually be well controlled! For strobers and I, if we did have some pain condition related to our nerves, pain management is a field all its own these days. We have many options. Rarely is there a dead end for anything you could diagnose yourself with.

For the moment, though, I would rather not think the worst. I'm trying relaxation, stretching, and hopefully PT if this therapist does the kind of work I need. Trying to stay on the positive side of the fence.

Yeah I kept away from medical websites for the longest time as well for the same reasons. After reading about Dr. Dimitrikov's recent study I felt the need to educate myself some more, and before I knew it I was spiraling off into the wonderful world of google and wikipedia where I found SPS.