Neue01's Case

[graeme]

I know exactly what you mean and where they are. Like thin wire. Not sure what they are though

[neue01]

I'm thinking they might be the edge of the bone that creates a circular opening for the region?

[popburner]

Hey guys - Any additives in any accredited quercetin product that aren't listed? I'm starting an elimination diet today and want to be extra careful! Also, does anyone know if psyllium husk (fiber) is ok if you're excluding gluten, oats, corn, barley, etc.?

[webslave]

Nothing sinister in Quercetin, but some people react to the cernilton in some of Supplier's products (are you bee allergic or honey sensitive?); psyllium is part of the banana/plantain family, so ok if bananas are no problem to you.

[neue01]

Does anybody else get a tingling in the perineum through to the scrotum from time to time. This seems to come and go during the day and lasts a brief moment. It sort of comes in waves and definitely correlates with eating something I'm not supposed too but sometimes it just happens regardless. It's very annoying. On good days its not there at all.

[strobers]

Yes, I have this symptom to, but it does not bother me. It's almost like a cool shiver that passes from one part to the next. I'm not sure what it is, but I can imagine it's just another goofy sympom of CPPS.

[neue01]

Yeah it's like a cold tingling that moves through the area. It's always annoyed me.

[webslave]

It's another symptom of fasciculations — do a search for that word.

[BrettP]

Yea, I have something similar as well. Comes for a brief moment, disappears....

[neue01]

So I've made what I feel have been improvements and then I get hit with setbacks. As of the last week I have been in a crappy place. It seems that the muscles that control orgasm are really giving me trouble again. These have always been my biggest symptom but they are very shot recently. I have trouble sensing them and after I have had an orgasm they flinch and spasm sporadically for a period of time before calming down. It's made having sex really difficult because it is the same area that seems to control the sensation of arousal.

Last night the stress of it all really compounded. I still get catastrophic thinking through this. I am always questioning myself and my condition. Is it really just a muscle issue or is something more sinister happening? What else could it be at this point? I've been through all the basic tests and they never find anything of any significance. No bacteria or infection and my testosterone levels are normal. I just feel that I should be feeling much better by now having released most of my trigger points by this point. There is still a dull ache though that persists and is prominent for 10 minutes or so after internal massage in the area to the right and above my prostate. I only have what seems like 2 areas of tightness left. I would not say they are trigger points anymore because when I manipulate them they release very rapidly with in 15-30 seconds you can feel them loosen up. Once they are loose though it's not like I get a flood of sensation back or anything. How much longer is this going to take? It's been 6 months of diligent concerted effort. Am I off base? Does anybody have any insight or words of encouragement? I could really use them right now.

[calguy]

I'm sure everyone will tell you its no easy fix and takes a while to get better. I too am feeling a little crappy and down about all this. I was doing really good for a while then everything starts acting up again? That is the frustrating part and the most discouraging. I would say just keep pushing forward, like we have a choice, and I'm sure you will see improvements. I haven hit my year mark yet but much better than when all this started. I'm expecting this to be around a while and from the posts I read about 2 to 3 years is when a lot of guys feel much better. It is muscular problem I believe and stress and anxiety contributes. So have you been proactive treating this since it set in or have you only recently started? try and relax and keep your head up!

[Jay]

Hi neue01,

While I am not qualified to diagnose you, I can tell you one thing: catastrophic thinking is extraordinarily common with CPPS. I have convinced myself that I have everything from nerve damage, to entrapment, to CRPS. My first physical therapy appointment is on Friday, and I've tried to tell myself that there's no point in going since my issue is surely neuropathic. When your mind messes with your resolve like that, it can be really difficult to handle.

As calguy says, there is no easy fix, and none of us really have a choice. This is the hand we've all been dealt. However long it takes us to individually improve is the simple reality of it! Don't give up. If none of the many doctors you've seen has found anything, then concentrate on what has given you at least some improvement: muscular work.

To answer your specific question, from what I know, everyone is different with regard to when their muscular work 'sticks' and becomes lasting. I happened to be reading Headache In the Pelvis last night, while I was in bed. In one of the success stories, a fellow was discouraged with his work, and Doctor Wise told him that it would take about two years (the time it took Wise himself) for things to really take root. Sure enough, two years later, he'd made the progress he desired.

If you would like to pursue other medical opinions, by all means, consider consulting types of specialists you have not previously seen. Do whatever it takes to set your mind at ease. While you're working on that, though, my layman's opinion is that you should continue with what you're doing.

Edit: One other thought ... Who are you seeing for therapy? Have you tried anyone else? Sometimes, one specialist will find very well-hidden trigger points that another will miss. You can find countless stories of that with the search function!

[neue01]

I've been seeing Dr. Weiss here in the the bay area. I've been really diligent about this stuff and have found better success finding trigger points on my own in the long run. His help up front was instrumental though. He basically had the insight and knowledge to diagnose me. I still remember my first session with him and his comments about how tight I was and that I did in fact have a bunch of trigger points. I was worried about nerve entrapment and he ran a few physical tests that disproved that idea as far as he was concerned. I can't help but say that I still sometimes start thinking I have PNE when times are bad like they are right now. It's the whole catastrophic thinking thing hitting me when I'm down. It happens every time.

I just don't understand why I'm not getting better and better instead of having these points where I feel better then worse right after in waves. Sometimes I wonder if all the massage and manual manipulation is stirring things up too much. I just really want to be done with this. I must say I've focused mostly on the notion of it being TP's and less focus on stretching or my mental state. I do stretch and mellow out but maybe I need to spend more time on these other areas? It's just that when I try them they don't seem to offer as much. I don't see immediate effects like you get from hands on muscle massage. What have others experienced in this regard? Do you get visible or immediate effects from relaxation... or is it more of a long term sort of thing?

I have also been experiencing a bunch of muscle flinching in my upper arms and thighs. Is this a stress related thing or is it indicative of something else?

[webslave]

Having not had a course of trigger point treatment myself, but finding that with any accredited quercetin product I improved faster when I took little breaks from it (3 weeks on, one week off), I wonder if one or two week breaks from PT would help, giving the good effects time to consolidate? Just a thought...

[neue01]

How did you get better with no PT work? Where you able to relax enough that your trigger points simply released themselves over time? To me it seems like you could never relax enough to release a trigger point without having to actually go in and manually release it. What are your thoughts in this regard?