My story of the road to CPPS - MajorSky

[webslave]

It's worth trying. Not long term though...

[MajorSky1]

Yesterday morning I went out of town, up north to my friend's cabins with the intention of just relaxing. I have been stuck in my room for far too long, laying on the bed in pain, and I wanted to try to break that cycle, and get some different scenery. After I arrived, I went into town to a cafe to get some lunch. As I was standing in line, I felt my pelvic pain starting to flare up more than it's usual ambient level. I don't know what elevated it - maybe driving for 3 hours, not sure. I used an inflatable ring the whole way. Suddenly, the whole trip was not fun anymore. As the afternoon progressed, it got worse and when I got back to the cabin, I did a pelvic floor check, and didn't find tightness but there were painful areas. I ended up taking a half a Xanax and went to sleep at about 6:30pm. It didn't help the pain, but it knocked me out for a couple hours. My plan was to make a brief jaunt to Mackinac Island this morning, and just walk around town for a while. I drove up to Mackinac City, but by the time I got there I just didn't feel like doing it. Pain was making the whole thing seem like unenjoyable work. I ended up driving all the way home today, which was not pleasant. Nothing is pleasant with this pain. Part of me wants to be able to do things for the sake of not letting the anxiety control me, but when I try the pain makes it impossible to enjoy ANYTHING, as hard as I try. So it's not always the anxiety that holds me back, sometimes it's the pain itself.

Ever since I got that steroid shot almost three weeks ago (which I regret) the pain has seemed to be ramped up a couple notches, and has returned in places where it's been quiet for a couple months prior. Both sides of the cavernosus hurt, my urethra hurts from the bladder neck to the end of the bulbos urethra, and even past it a little, but does not really burn when I urinate. Does that still count as allodynia or hyperalgesia? The front area of the pelvic floor hurts.

Is it still CPPS even if the pain doesn't seem to come from trigger points?

I'm trying to stay calm, and not get beaten down, but I feel awful. I keep getting to 5pm every day where I think to myself "OK, we'll just relax, have dinner and read for the rest of the evening, and start over tomorrow - maybe the nerves will calm down after a night's sleep." Before I know it, a month has passed and things don't seem any better.

From what I've seen, getting opioids might be difficult from this pain institute, and it wouldn't be for at least a month from now when my next pain appointment is. And to be honest, I'd rather not be on opioids. I could ask my PCP perhaps.

I'm going to take a hot bath, and once again take it easy tonight, and start over tomorrow. I'm trying to keep in mind that some people have this longer than I've had it before they start to see things ease up. Sick being stuck in pain, laying on the bed for days or weeks before I get one, maybe two days of feeling mediocre. I don't want to sound like I'm whining, or complaining. However, I just can't seem to get a break from this suffering, and it's starting to get to me.

This is what CPPS does, right?

[webslave]

See your PCP and get opioids. A short course, as an experiment, will do you no harm and if it breaks the pain cycle it will

1. give you a breather,
2. reassure you that you can get out of a pain corner if you need to, and
3. allow the nerves to settle.

TBH your situation, as a middle aged man living with his parents, unemployed and single, is perhaps a huge stress on its own. That's probably the underlying cause of your condition, and the only way to fix that is to get out of it, either by getting a job/home/partner or, if that is too difficult or impossible or unlikely, completely reassessing what life is for you, what realistic goals to set yourself in the time you have left. Find a way to be happy.

[Caedar]

Only a little time, so I'll just offer this:

Pain is not only nociception (nerves sending danger signals because of a dangerous input). Pain is your body warning you of danger in general. You can associate actions (driving, say) with pain because driving has caused you nociceptive pain in the past (from exacerbating trigger points, etc.), and that association can actually generate pain. There's a great case study of a man who felt pain whenever he smelled bread because he associated the smell with the onset of this pain. The more you slowly and carefully and kindly get out of your comfort zone, focusing less on whether you are in pain or not and simply accepting the experience, the better you will get. You of course must still tackle the nociceptive part, but it's really important to accept the pain for what it is to reduce the anxiety surrounding it.

[MajorSky1]

Webslave and Caedar,

First, thank you so much for your time in helping me try to unravel this. I appreciate it more than you know. I believe that what you have both laid out here is the truth, and right on the nose for me, as far as aggravaters and causes go.

In a very deep way, I do NOT want to be living here with my folks. I got stuck here inadvertently as a byproduct of the pain of the syndrome. I tried to work a job for a couple weeks back in March, but the pain and panic attacks made it impossible to learn the complicated job. I think I still have fear that if I get a job, the same thing will happen: pain while working, inability to sit, and communicate well, and moments of panic. However, back in March I had nasty trigger points present, which I think are mostly or all resolved.

I'm thinking about maybe looking for a part-time job to try, something easy with low pressure. The pay won't be good, of course, but it's more of an exercise in showing myself I'm capable and that I can handle it. Then I'd start looking for something a little more serious. I do believe it's possible to get out of here and back on my own feet, but it may be a gradual process, and the key to it is getting the pelvic pain down below the intolerable threshold and keep it there until it fades away. It's hard sometimes to not fall into the thought process of feeling like a loser, and comparing myself to other people around me (who do not have CPPS). I tend to be hard on myself. Yes, driving used to cause me pain, so it makes sense that my brain is more alert for it while I'm driving and I think it just slips back into the old habit.

Slowly easing out of my comfort zone is something I need to try. I'm not really sure HOW to approach that, but I want to try. It IS difficult when sights and smells in places I've always enjoyed now make me think of walking around in pain. My sense of smell back in Jan - March seemed dead, but for the past couple of months it's been on hyper-drive, and sense of smell is a huge memory trigger for me. I can do well with the pain at times when I tell myself that it's just pain, and nothing is really physically wrong with me. I get by for a while with that thought process. However, it always seem to flare beyond the point where that thought process works, and THAT is a huge frustration, and something I've been trying to find a way to solve. I know beyond a doubt that if the pain was completely gone, I'd be happy. Somewhere under all the pain is a guy who enjoys life and is happy.

I made an appointment to see my doctor this afternoon, and will discuss with him a short round of some sort of opioid.

Thanks again for your responses!

[Caedar]

I know beyond a doubt that if the pain was completely gone, I'd be happy. Somewhere under all the pain is a guy who enjoys life and is happy.

This thinking will cause a lot of anxiety, unfortunately. Become a person who would be happy with the pain, and you'll find yourself getting better. That's certainly easier said than done, but it's the surest path toward recovery, as paradoxical as it sounds. (Again, with effort toward fixing the physical issues.)

[MajorSky1]

I can see the truth in that, and I believe it. But yeah, easier said than done. I have tried to hold to that way of thinking as a flare comes along, but it's tough when, as you know, you feel like dying while the pain is incessant. Perhaps practicing this way of thinking more intently between flares (even though the pain is always there one way or another) would be the best way to start. Maybe eventually it would help to reduce the intensity and duration of flares.

A couple months ago I started putting together ideas for a novel, and it seemed like I had more breaks back then. I'm going to try to pick up the novel idea again, maybe start writing every morning (which involves sitting unfortunately - and painful sitting is the main reason I sort of gave up) and see if it makes a difference. I'll bring along my new inflatable ring to sit on.

There is so much counter-intuitive to this condition. It seems like every time I think I'm doing something right, turns out I'm somehow not. I get very sad and discouraged by seeing so many guys who have been struggling with this for years. I feel bad for them, and unfortunately I worry that I'll be suffering that long too. I'm trying to find a way to change my thinking on that. I'm certainly not doing myself any good by entertaining the thought that I could be struggling with this for years. All that does is plant the seed for something that may not be at all true in the first place. I'm working on creating healthy things to focus on. That comes with a learning curve.

[webslave]

which involves sitting unfortunately - and painful sitting is the main reason I sort of gave up

Some writers stand to write. You could make a standing desk with a few bits and pieces. Others use a bed tray to write in bed.

[Caedar]

Yup, standing desk convert right here.

[MajorSky1]

I'll see what I can come up with for some sort of standing desk rig. There were a couple people at my old job who had those.

After seeing my Dr. yesterday, and asking him about opioids, he said he didn't think that was a good idea since I have chronic pain, that using those are risky since they are addictive, and can be even for a short duration. I tried. I suppose those types of drugs create liability issues.

However, he prescribed Gabapentin 100mg, and Meloxicam 15mg. I took the Gabapentin last night, and it seemed to kick in pretty quick. I haven't had that little pain in a long time. Pain is back this morning, but just took the first Meloxicam, which is a strong NSAID I guess, and I suspect that one isn't going to do too much for me, but we'll see.

Gabapentin is more for nerve pain. I'm hoping that after taking it for a while, and it gets going that its effects start to last longer.

Is there a chance that if I take these for a while, that it could actually help shut the nerves and pain down, and help to solve this? Or is it, no matter what, a temporary thing?

I feel fairly certain that the caudal steroid injection elevated my pain, or at the very least did nothing to help it at all.

[Caedar]

Is there a chance that if I take these for a while, that it could actually help shut the nerves and pain down, and help to solve this? Or is it, no matter what, a temporary thing?

Regardless of whether it's a temporary action or not, having tools to control your pain should bring your anxiety levels down, which should in turn reduce your hyperalgesia (excessive pain in response to a stimulus).

[MajorSky1]

That result would be a huge relief. Hyperalgesia is definitely what I've got happening. It typically takes a few days or a week for gabapentin to get up to full function, right? It was wonderful to have the pain significantly reduced last night.

One of those drugs is making me uncomfortable today with a headache, drowsiness, and kind of general malaise. I suspect it's the Meloxicam. I slept for 2 1/2 hours this afternoon.

[MajorSky1]

Ok Lads,

I've read definitions of hyperalgesia, and allodynia. I understand allodynia. However, the definition of hyperalgesia seems more complex, and confuses me a little.

Let me see if I understand this correctly. Hyperalgesia is a heightened state of nerve function where touch or stimulation of any kind causes pain receptors to fire even when there is no reason for them too.

Therefore, if I wake up in the morning and don't feel any pain while laying in bed, and then palpate, let's say the perineum to check for sore spots, and then right after a few gentle proddings, aches and pains seem to wake up - is this an example of hyperalgesia? So the nerves can lay quiet, yet at the slightest stimulation wake up with pain? And therefore, even though there can be quiet periods with no noticeable pain, there is still something abnormal somewhere.

Also, would the ache along the urethra that comes minutes after urinating and fades over 15 or 20 minutes be hyperalgesia? Or allodynia?

Just trying to get a clear understanding of these two things, and get a good picture of how this whole machine works.. Reading things on the internet is not always exactly the ideal textbook for medical studies.

With hyperalgesia, is central sensitization involved? If so, is this why it takes time to revert back to normal? I'm just trying to do some more research to learn about this because 1) I find if fascinating, and 2) because any little hint I can find to help recovery is valuable.

Prior to returning to Michigan last Fall, my plan was to go back to school for nursing, or teaching. Over the past 9.5 months of CPPS, I have decided that when things resolve, I'm heading into the medical field - either to be an MA, or a PTA. I'm a creative minded person, but I've always had an aptitude and a love for science. Also, I would find it rewarding to help people who are in similar situations as we are. Pain sucks.

[Caedar]

Let me see if I understand this correctly. Hyperalgesia is a heightened state of nerve function where touch or stimulation of any kind causes pain receptors to fire even when there is no reason for them too.

Not quite. This is closer to the definition of allodynia. Hyperalgesia means that something that normally causes pain instead causes greater pain. Allodynia is functionally different: it's believed to involve recruitment of non-nociceptors (like light-touch receptors, deep-pressure receptors, etc.) while hyperalgesia is believed to involve mostly changes in nociceptors.



I'm speaking in very general terms here, and the science is still in development, so I'd encourage you to continue reading the science. Anything by Woolf is essential: this one and this one and this one in particular (read the 2011 and 2010 ones first; they're less technical).

Therefore, if I wake up in the morning and don't feel any pain while laying in bed, and then palpate, let's say the perineum to check for sore spots, and then right after a few gentle prodings aches and pains seem to wake up - is this an example of hyperalgesia?

It depends on whether you're palpating something that would hypothetically cause pain with a CNS of "regular" sensitivity. If you have a trigger point that's painful, it'd be hyperalgesia. If there's nothing physically at issue there that would normally cause pain, then it'd be allodynia.

Also, would the ache along the urethra that comes minutes after urinating and fades over 15 or 20 minutes be hyperalgesia? Or allodynia?

Again, depends. If you have heightened levels of pro-inflammatory molecules in your urine than normal (say, from degranulation of mast cells), it might be hyperalgesia. If not, allodynia.

With hyperalgesia, is central sensitization involved? If so, is this why it takes time to revert back to normal?

Hyperalgesia and allodynia generally, and increasingly over time as you experience pain, involve central sensitization. Generally it progresses from peripheral sensitization to sensitization of the spinal cord and then the brain (the latter two under the umbrella of "central sensitization"). And yes, the presence of central sensitization is often what makes chronic conditions "chronic". Memory is thought to play an important role in this process. While it's important to know the difference between hyperalgesia and allodynia, it's very difficult to accurately assess whether one pain or another is amped up by hyperalgesia or by allodynia. In my own life, I kinda lump the two together. Most important to know is that both processes involve the CNS and that the current thinking is that, with patience and time and work, they can be reversed partially or completely. There isn't a lot of definitive science behind it yet, but it's getting there.

Over the past 9.5 months of CPPS, I have decided that when things resolve, I'm heading into the medical field - either to be an MA, or a PTA.
I'm a creative minded person, but I've always had an aptitude and a love for science. Also, I would find it rewarding to help people who are in similar situations as we are. Pain sucks.

That's great!

[MajorSky1]

Awesome! Great explanation. I see where I was getting a little mixed up now. The diagram is great! Thanks for the explanation! I'll read those reports, thanks for the links!

On a side note, I think the Gabapentin/Meloxicam combo is starting to take affect. Yesterday, something kicked my butt, made me feel hit by a truck. Today, no problems. Some pain still present but feels less intense. Gonna keep on this regimen, see what happens. If this is Allodynia then my theory is that if the pain is shut down for a while then it should be less likely to resume. If there is nothing to cause the pain then things should revert to normal over time. Sort of a reset, hopefully. I may be way off, but we'll see. :)