My story of the road to CPPS - MajorSky

[MajorSky1]

Makes sense.

[MajorSky1]

Maybe that is the connective tissue trigger points? Have you tried Aspercreme (trolamine salicylate, topical analgesic)? I know it doesn't do anything for deeper pains, but I might try it for this stuff that's not so deep, just to maybe get a break from it.

[MajorSky1]

Over the last few days, my pain has changed a lot again.

I don't really have the post urinary burning or aching, though I do have a lot of discomfort in the infamous right side of the tailbone area after a BM.
My overall pain has become a much darker pain, a very deep ache down in pelvic muscles, and the lower back around the sacrum to the tailbone, analrectal, the ischiocavernosus, bulbo spongiosus, and it feels like everything internally is throbbing dully. There is some fasciculation going on in muscles next to the rectum and upward. I have been doing my best to distract myself, and anything I can to take my mind off it, but it's not working.
I wake up in the morning and within a minute or two of laying there awake, the pain starts to thrum through my body.

It's very hard to describe because it's a very deep and multifaceted pain. I think it is producing fight or flight response at times too, like when I sit on my bed laying back at a 45 degree angle, it puts pressure on area next to the tailbone and causes a gradual swelling of intense pain until I feel shaky and rattled - a very strange feeling.

I want to get my life back and be able to do things I used to do, but even though the pain is in many ways different now, something about it makes it incredibly difficult to function. I don't think everyone who has this feels it the same way. I don't think it affects some people as deeply as others as far as the way a persons brain processes the pain.

I'm feeling more and more hopeless and trying to figure out a way to prevent that from happening. If you hurt constantly and meditation, relaxation, walking, psychotherapy, and nothing else seems to help, what are you supposed to do?

Though my anxiety is tempered by buspar, I now have a hard time telling if the anxiety and pain are intertwined, or if there's something else going on. I'm more withdrawn, but not because I want to be, but because the pain makes it too hard to enjoy anything or be myself around people. I hate this. I'm not whining when I say this, just stating a fact, but I'm suffering badly. I'm trying to be patient, but it's not easy when there is always pain hammering away somewhere.

According to my PT my pelvic floor muscles are back to a normal state, and when I've checked them since my last session, they do seem to be ok. I can't find any trigger points in the floor. I do wonder if there is something going on farther up, because according to the description on the main sight, trigger points themselves do not hurt, but refer the pain, or hurt when palpated.

I still have pain, and aches, so I'm wondering if there are still trigger points, maybe up around the prostate where I can't reach. My soas are fine.
I'm off for a walk.

[webslave]

If you have no triggerpoints anymore, then you are left with the allodynia and windup.

A suggestion at this point is to get proper pain management, from a pain clinic. That will stop the sensations and allow you to wind down.

Enquire about pain clinics in your area. They will probably give you opioids, which may be worthwhile, for a few months, to reset the windup. Just be aware of the dependency problem and wean off them as soon as you comfortably can.

[MajorSky1]

Ok, that sounds about right. It actually FEELS like windup. I'm awaiting the pain center to contact me from the referral I had to them last week. I also have a pcp appt. next week, and I'll talk to him about pain management as well. Thanks much!

[MajorSky1]

Well, I had a good run over 3 or 4 weeks of gradually feeling better, more functional, more clear headed. My pelvic floor muscles seem to be in a normal state, with no tight spots or trigger points (that I can find). The past week, I felt pretty darn good.

I still had occasional aches, some allodynia, and the ache in the ischocavernosus that comes and goes, and aches in the sacrum, but generally, everything was feeling very low key for quite a while. It was the longest stretch of feeling decent and good that I've had in a LONG time. I went up north for two nights, did some fly fishing, sitting around the fire, relaxing. Felt pretty good. I even had one PBR - first beer in 7 months or so. Had no issues afterward, and I felt really good on the way home when I came back on Saturday.

I started to think about planning to look for work, and how to get going on the process of getting back on my feet. Felt well enough to go get a pizza Saturday evening, and I did have one beer. I didn't notice any sudden changes in the way I felt afterward like I would have 5 months ago. I did eat too much, but the pizza was incredible. Sunday, checked on some funds that I thought were going to be available for a plan I was making, but found out those funds are not available, and I suddenly felt very stressed about it, because without those funds, I'm sort of stuck here in my parents condo which is a very depressing place to be.

Went fishing with a buddy Sunday afternoon just outside of town, but when I arrived at the location, I started to feel really crappy. Nauseous, shaky, and the i-cavernosus on the left side of perineum started to hurt bad, aching, along with a general ache in the lower back. My thoughts started to get scrambled and I gradually felt the joy of fishing vanish as I started to feel sick. That horrible ominous feeling of no hope overtook me. I know that you don't escape this condition suddenly, and one day it's just gone. It's gradual, with flare ups of anxiety/pain along the way, and hoping that over time they become less intense, and you return to the platform level you were at before from where you start to ramp up recovering again. Nonetheless, such a bummer when a flare hits after starting to feel better, with a better outlook, and a clearer, more normal thought process.

I'm 47, but I feel like I'm living in a nursing home while my mother and I try to take care of my dad. I don't have any space of my own except this bedroom. I don't mean to sound like I'm complaining, or whining, but I'm seeing more and more that to recover I need to get out of here. Yet, I'm concerned if I commit to a job, sign a lease on a place, that I'll have another flare up and jeopardize employment. I thought maybe I was finally out of the woods until yesterday's flare. So I'm looking back over the past couple of days now and trying to see what the most obvious trigger of my pain/anxiety (?) flair was. Was it the beer? Doubt it. Pizza? Doubt it. I don't have dysuria anymore. I've been having about a quarter cup of coffee in the mornings for a week or more, and have had no urinary issues from it, that I can tell. Was it stress from a money issue which is linked to me getting back on my feet and getting my life and future back in a lowest-stress way possible? Was it the making of a great plan in my head that gave me hope for a change, and then fell apart that caused me physical pain? Hard to believe, but it seems like it. For some reason, it's hard for my logical mind to accept that being stressed out can cause physical pain, but I think that was it. It triggered some kind of deep anxiety which triggered what? neural wind up, and thus pain? Deep breathing didn't help. Mindfulness didn't help - I tried those methods when I felt it coming on. How do you nip that in the bud? I thought distracting myself by going fishing would work. I was doing so well.

So I went home, crawled in bed at 5:30pm, and stayed there and slept until this morning. I had an appointment for a Caudal Nerve Block at 8am this morning, and had that done. Just resting today. I spoke to the pain Dr. about CPPS, which he said he's familiar with, and has many other patients who have it. He threw out the "this is a lifetime condition" phrase. I countered and said that I know of people who have cured themselves, and that I don't want to live with it the rest of my life, and he backpedaled and said that yes, for some people they overcome it, and end up cured. The issue I have when people say "this is a lifetime condition" is like saying "this is a life sentence". But how do THEY know that a person is going to have this for life? They don't know. So what happens when a person with CPPS is told "this is a lifetime condition" is that a seed is planted, perhaps in the unconscious mind, or the subconscious mind, and the negative is reinforced making it harder for a person to fight this, and kick it for good.

Apart from having some soreness from the injection point, and some mild nausea (which might still be from an Advil I took yesterday), I feel a little better than I did yesterday. I'm hoping that shorter periods of flare ups is the trend, and each time after, I land on the level where I was before and proceed to feeling better from there.

I was thinking of stopping Buspar, but I think I'll stay on it for a while.

I just want to get back to normal life. Seems like it's getting there.

[MajorSky1]

Just wondering if anyone might know how to find pain that is felt in a location, but when palpated doesn't really seem to be in the spot it's felt?

I have a horrible pain in the left perineum around the ischiocavernosus/bulbospongeosus area. I feel the pain in that area while I go about my business. However, when I palpate externally all around the area, I can't really find a spot that seems to be sore. I've tried internally too, and can't really find anything at least in the pelvic floor that is referring pain there.

It's a nasty ache, and not sure if it's nerve pain, or muscular/tissue pain. Occasionally it will be aggravated by ejaculation, but sometimes it just appears out of nowhere. Then, over a day or three, it will fade away to barely noticeable. I keep reaching down there to massage it, but I can't seem to find the sore spot even though there seems to be pain there.

Does anyone know, is there a common spot in the pelvis/abdomen that refers pain to a side of the ischiocavernosus or bulbospongeosus, over to the groin? I've seen other posts from long ago that mention pain in that spot, but I haven't found anything posted about clues. Perhaps it's just mysterious nerve inflammation.

Thanks in advance for any clues.

[webslave]

Some trigger points refer pain elsewhere, sometimes quite far away (eg neck and shoulder trigger points can cause headaches). It's quite possible that the trigger points causing your pain are not accessible to you. How often are you seeing the therapist who does intrarectal massage?

[MajorSky1]

She ended further sessions because my pelvic floor was good. I was seeing her about 2 times a week for 3.5 months.

They worked the soas externally, and never found any major issues.
They would not go deeper internally than the levator Ani.

I do have a strange ache between navel and hip bone, about two inches down toward the Pubic bone. Might be a bladder sling, or some other muscle.

[webslave]

She ended further sessions because my pelvic floor was good

Who is the therapist? This is a private forum, you can state her name here.

[MajorSky1]

She did a great job, went the extra mile for me and really helped solve my pelvic floor problem. I would recommend her if a person has basic pelvic floor, hip alignment and psoas issues. She was very positive, and supportive. For going deep up by the prostate or bladder, they don't do that there, which is too bad. I got the impression they were discouraged from trying that because I could tell that she wanted to try but it seemed like she wasn't allowed.

Actually, I used up all my visits allowable through my insurance. We left one visit available just in case. She is a follower of the Wise Anderson protocol, but not necessarily trained in that specific protocol. Tammy Holmes.

I've noticed that when I get stressed about something that the left side ischiocavernosus area starts to ache. Wondering if it just spasms with stress or activity. If it just spasms but doesn't relate to or produce trigger points, what can you do to start that on a path of resolving? Does pain always mean a TrP? Or could it be a jacked up nerve? That particular pain is the worst one I have now and it can really take the joy out of life for a couple days at a time when it gets going. It does sometimes go away for a few days. So if it can so that for a few days, it should eventually be able to resolve for good, seems like.

[webslave]

For going deep up by the prostate or bladder, they don't do that there, which is too bad.

Really is too bad. If you cannot get a therapist to massage the full pelvic floor, you are left with these options

1. Overcome the spasm through time, meditation, paradoxical relaxation
2. Travel to see a therapist that treats you thoroughly
3. Self treat with a wand

Does pain always mean a TrP? Or could it be a jacked up nerve?

Usually means a TrPt, but can be allodynia.

[MajorSky1]

Do you have any links or avenues where I can find a full pelvic floor therapist around me? Grand Rapids MI? Or west Michigan? I've got a call in to one for questions at the Spectrum Rehab Services.

Also, are paradoxical relaxation CDs available somewhere? I don't see them in the store link.

As it turns out, today I'm having the worst pain flare I've had in months in that ischocavernosus area, and there is also a horrible irritation, kind of itch and ache, in the bulbous urethra, and beyond, which has been 98% gone for a couple of months. Can allodynia be very strong?

Last night, for the first time I used a hemorrhoid suppository for a small hemorrhoid. There was some unusual dull aching pain that started up within a few minutes after putting it in place that wasn't there before. Wondering if it's the medicine in the suppository that's causing the flare. Otherwise, maybe a bad TrPt. Wish I could locate it.

Thank you webslave.

[webslave]

For a local therapist, go here
viewtopic.php?f=45&t=6289

or call Dr Wise's office at 707) 874-2225 or (707) 332-1492 and ask for the nearest trained PT. Also ask about CDs. If there are no CDs, use Dr Jeffrey Thompson's stuff.

Try hot bath for sudden pain not there before. Suppository should not cause a flare.

[MajorSky1]

Thanks for the link. I found one in GR, just down the road from me. I'll call tomorrow.

Thank you for the CD info too!