My story of the road to CPPS - MajorSky

[Caedar]

I did the TP release myself. It was all external.

[MajorSky1]

Beginning Sunday, I upped my dose of Buspar from 15mg 2xday (30mg) to 22.5mg 2xday (45mg). I have noticed a difference. Within 20 to 30 minutes of taking a dose, I begin to feel like I've slammed about 5 cups of coffee. It's not identical to a caffeine buzz, but similar. Feels kind of good.

However, in just the past couple of days something very interesting has happened. Pain receded. I have had some intense bouts of pain, and discomfort in the tissue lately, some of which is that aching itch sensation just under the surface of the skin, and down into muscles. When I try to locate it via palpation, no luck on finding a hot spot. It's very strange. I was on Gabapentin for 10 days and it was making me VERY depressed. My blood pressure was also too high. Sunday, I quit taking it and upped Buspar. Blood pressure has come down already, and I don't feel as depressed.

The past few times I've taken the higher dosage of Buspar, I have noticed a significant drop in pain and discomfort within 15 or 20 minutes. It has gone down about 85%. The first time that happened I thought maybe it was just a fluke. But it's happened every dose since then, and seems to be lasting longer after the dose.

So, this coming Sunday, I'm going to up the dose to 60mg/day (I have already had my psychiatrist suggest this, and approve it), and keep it there for a while. Psychiatrist says Buspar doesn't really work well at anything lower than 60mg. However, since there is a pretty big buzz after taking 22.5mg, I'm going to give my system a chance to adjust before jumping up to a 30mg dose. I would rather be on benign Buspar if it helps, than any of the other more complex meds that I've tried so far.

During the last 5 or 6 days of taking Gabapentin, which was not helping my pain, I started to notice some anxiety starting up. Buspar is not really for pain. So if my pain drops after a sufficient dose of Buspar, then it may be more evidence that anxiety perpetuates the pain. Thing is, it's possible I've had anxiety humming along at times and didn't realize it which may be why so many things I've tried haven't had full effect on the pain. Keeping fingers crossed that this may at least help keep things at a level where I can more easily put my mind on other more productive things without it hammering constantly at my conscious.

[webslave]

Buspirone is an interesting drug. The improvement you are experiencing suggests a central role in your condition, which is not at all unusual.

[MajorSky1]

On Sunday, Sept. 6, I quit taking gabapentin after being on it for 10 days. I quit because, despite the low dose, I was getting VERY depressed the longer I was on it. Last week, Monday through Wednesday I felt a little better. I DID wake up feeling sick on Tuesday the 8th and believe that it may have been a small withdrawal from gabapentin, but it faded in a hour or so, and then felt ok on Wednesday too. However, Wednesday, I started to have a herpes 2 outbreak so Thursday morning I started taking acyclovir. After the 2nd dose around 2pm on Thursday, I started to feel pretty sick, nauseous, headache. The acyclovir dosage is 400mg 3x/day. (Back in April, I took it for a month 2x/day as a diagnostic to see if any of my symptoms were postherpetic related. I don't remember having such intense nausea and malaise on the 2x/day dosage. Because of that, I didn't make the connection right away. ) Yesterday I went to urgent care, and the doctor said that antivirals cause nausea and a sick feeling for most people. Today is my last day on the acyclovir, thank goodness. Feeling sick really messes up your mental status with regard to pelvic pain. If I would have known acyclovir would have made me feel this lousy, I would just have let the outbreak run its course.

Pain Clinic Follow Up:

Last week I had a pain clinic follow up to consult about the results from the injection a month ago. I told the PA that my pain had increased since the injection for the entire month. This was his response: Healthy nerves become agitated when given a steroid. Nerves that are already agitated LIKE the steroid and respond to it by calming down. His deduction was that my nerves are ok, but that I must have some kind of muscle thing going on that is causing the pain. We'll follow up again in a month after I do some more PT to see how that goes. (I'm not going to do any more injections). Does that reasoning sound a bit like B. S. ? Either way, it seems like the injection irritated the nerves, maybe by creating pressure on the caudal with the steroid solution. He inquired if my pain had started recently to calm down a little, if maybe the steroid was starting to wear off a little. Just after quitting the gabapentin it had seemed to quiet down a little.

As of today, my pelvic floor is mostly pretty quiet. My worst pain is still in the bubosurethra, and bulbospongeosus area, which since the injection a month ago, has been nearly constant. I've noticed a very slight calming in bulbospongeosus now, but it's still there, and fluctuates throughout the day. My new physical therapist says she thinks we can make significant progress on this area. The urethra is about the same, and occasionally spikes up so bad that it creates a tremor deep in the pelvis.

Since the small pilodinal cyst that I had a week ago, which has healed, I have developed a tight knot in the edge of the glute, just to the left of the natal cleft. I'm not sure if it's a muscle knot, or maybe a lymph node under the muscle. Otherwise, I've noticed that sitting is about 50% more comfortable than it has been since March - so I think there may be some improvement in that regard. I still have to be careful, and take it easy, of course, or I'll start up aches or tightness.

Here's my theory on the past few months: I believe that if I did NOT have the steroid caudal injection over a month ago, that I would probably be in MUCH better shape right now. I believe that it set me back and caused a cascade of more pain and other problems, and may even be an instigator for the pilonidal cyst (cortisone acne), as well as a catalyst for the latest herpes outbreak, which steroid injections apparently do to people with herpes.

I'm hoping that after I finish the acyclovir and when the herpes outbreak calms down, the knot in my lower back, and some intermittent aches around the tailbone dissipates, that I may end up being significantly more comfortable than I have been so far - and if I'm really lucky, maybe I will have reached the "shift". I have a lot of concern about the bublospongeosus area pain - especially since it's related to ejaculation. Since the injection, it has been constant, fluctuating in intensity whereas before it would fade away between acting up. I'm hoping there isn't anything permanently damaged in there - but there shouldn't be because I haven't ever had an injury, or blunt trauma to the area. I'm trying to abstain from ejaculation for as long as possible to let it heal. If THIS pain completely heals, I think I'd be in pretty good shape.

Also, I'm still at 45mg of buspar/day, and it still helps ease the pain about 20 minutes after a dose, and lasts for an hour, maybe two. I'll up to 60mg tomorrow, or the next day.

Still considering Remeron, but waiting to see if I can pick myself up other ways first, including seeing if Buspar will help over time. Depression has been an issue lately, especially since the gabapentin.

[webslave]

You seem to be on track. I think you've assessed the situation quite well.

[MajorSky1]

Apparently Remeron is an antihistamine. Since I'm having urethral annoyances with the achy itch, I'm sorely tempted to try it (no pun intended) and see if it would help in the same way hydroxyzine does. However, I'm a big chicken. I really don't want to gain 25 lbs, and be sleepy all day for two weeks. I did ask my psychiatrist about the others, Elavil and nortriotyline, and he said he still thinks remeron is the best one for me to try. Hard to make these decisions when I feel so crappy.

[MajorSky1]

Tried a Flexeril last night before bed. Slept like a baby and even slept in until about 10:30, the best sleep I've had in a long time, and I usually feel like I sleep fine, but this was a very well-rested kind of sleep. I did start to wake up at about 6am with the sick feeling and also the feeling of waking pain in the usual spots, and the pressure feeling I've been getting in the interior sacral spine, but with a quick thought of something like "just ignore it and go back to sleep, that med is making me feel better, " I quickly fell back asleep without the usual hour and half of laying in bed feeling sick with pain before it fades. My pain is still there, but it's very quiet. The back pain I was having from a pulled muscle is much better too.

Of course, as with any drug that makes you feel good, or better from pain, you can become dependent on it, and should only take it no more than two weeks. My dosage says 3x day for 7 days.

I will only be taking it at night before bed for another day or two. It does make you very sleepy. Beyond that, I will probably only take a single dose as needed once in a great while, IF I need to.

So, if you've been having skeletal muscle tightness and pain caused by it, then you may want to try this drug for a short time just to get some relief. It might be a good tool in combination with Physical Therapy.

[MajorSky1]

I keep thinking I'm feeling a little better as one of my pains seems to start to recede, only to be replaced by a new, or returning pain in a different location. I mean it's absurd how that keeps happening. My left groin pain has finally started to calm down, and like clockwork I have a pain that has been very dull or nonexistent for a couple weeks suddenly, today, flare strongly. Apart from some tightness in my lower back, if it weren't for that new flaring spot, I wouldn't feel too badly. But I can't seem to ever have low tolerable pain in several places instead of this strong pain going on in one or two places. I swear it's a demon.

[MajorSky1]

Yesterday, I had PT with two of the three team members who work on me. The first did external massage in my lower back, and glutes. The second did internal TrP stuff. So I thought I was free of trigger points all this time. I have been checking my pelvic floor once or twice a week for any of those hot spots that I haven't had since June. The PT found what she called "some tightness," which I didn't think meant "trigger points" necessarily. Yesterday she said since I still have some discomfort with a finger inserted that I still have a bit of issue that hasn't been resolved yet in the pelvic floor. I didn't think it sounded like a big deal - just some small residual stuff that would fade away, I guessed. I left the appointment and didn't really have too much post-treatment discomfort for the rest of the day in the pelvic floor (although my left b-spongeosus area flared up).

This morning, when I checked the pelvic floor in the shower, the left side seemed ok. But when I swept the right from back to front, BOOM! I found what was undeniably trigger point pain and tightness around the 1 o'clock area. I haven't felt that kind of pain since May or June in that area. I'm a little bummed about it, but I spent some time doing some self therapy on the area until I felt it resolve as much as it would. At least I know what it is, and that it can be worked out over time, so it didn't send me spiraling into despair. I'd rather deal with some pelvic floor trigger points that DO respond to therapy, than to have to deal with this damn nerve pain on the left side that doesn't respond to anything.

I called the PT, and she said it's normal, and means there's still some work to be done. She said don't be discouraged.

I suppose it's true then, that even though for several months I thought my pelvic floor was good enough to resolve the rest of the way on it's own, in actuality, with a PT's work, discovered that there's more to be done.

Apart from the caudal injection I had a month and a half ago seemed to cause heightened sensitivity and some soreness, I do question the sudden presence of a painful trigger point, when the day before it didn't seem to be there before PT.

I know it's normal to feel worse the day after the first PT when you have trigger points, but is it possible I had dormant trigger points that she woke up? In other words, if my pelvic floor was normal to begin with, chances are I would not have this issue the day after thorough PT, correct?

The TrP is adjacent to the small lump that I believe to be a possible lymph node, which has slowly shrunk in the past couple weeks. Not sure if that might be an instigator for a trigger point as well since it does have mild pain with it when aggravated, and maybe that could be causing the muscle to reflexively tense up there more.

[webslave]

I know it's normal to feel worse the day after the first PT when you have trigger points, but is it possible I had dormant trigger points that she woke up? In other words, if my pelvic floor was normal to begin with, chances are I would not have this issue the day after thorough PT, correct?

Not dormant, but manipulation can flare a lurking trigger point and make it more apparent. Clearly, your pelvic floor is not normal.

[MajorSky1]

Yes, that's true, although it has seemed better than last winter. Still work to do.

[MajorSky1]

Had PT yesterday, and don't feel too bad in the pelvic floor today. However I did use a baclofen suppository last night.

But my left perineum/spongeosus is VERY nervy and has seemed to have some slight swelling under the skin compared to the other side. I've been leaving it alone for the past couple of weeks, and the therapists have only examined that area once so far and did some skin rolling on that thigh, but that was two weeks ago. I'm especially concerned about that area. It's very slight, and feels a little warm to the touch which means it's probably inflamed. I iced it this morning for a while. I'm wondering why it's still so nervy, sore, warm, and a tiny bit puffy. It hasn't seemed to spasm in that area over the past two weeks with regard to ejaculation, but that has only occurred 2, maybe three times. Otherwise I've taken care not to bother it, or prod at it and trying to just let it heal.

Could there be something else going on in that quadrant of tissue besides CPPS related issues that would be causing it to get worse in ways and not heal?

Also, yesterday I had blood drawn for an IGg test for food allergies. Should have results in a week or so.

Since starting new round of PT, my glutes and ischio tuberocity where the Alcocks canal exits are very tight, and it's again uncomfortable to sit for long. What's weird is, before that I was just starting to feel much better about sitting without pain or discomfort. I don't know if that means that things had tightened up so much that I just didn't feel pain before, or if the beginning of this PT is causing problems. I only mention this because I was actually, prior, just starting to sit without discomfort, and it was nice. I don't know how long a caudal block lasts, but wondering if it's starting to wear off, even though my pain has seemed worse since I had it.

I had an offer from a friend of mine in Colorado to come stay with her for a month in order to do some healing, and get a long break from this situation I'm in. I really want to, but of course I have a fear of getting out there and then being in pain and again stuck in a bedroom for weeks at a time during flare ups. She reminded me I used to be the picture of health before this hit. She's right. For better or worse, I'm becoming more and more angry with this condition, and the fact that I can't seem to get things to at least reduce enough to let me live my life. It just won't give enough to let me get some health-momentum going consistently. I'm doing everything I can, including meditation, walking, and working on controlling anxiety, depression, as well as trying to keep my chin up with positive thoughts.

[MajorSky1]

I just had a paradigm shift. It's taken me a long time to figure out how to frame the pain and separate it from the self. You have to think in more mechanical terms.

The brain creates and delivers and receives chemical messages. But to frame this correctly you have to forget about the messages part. When you have chronic pain, and a pain flare up of any kind, you have to understand that when you let it bother you, or upset you, you are mechanically sending chemicals from your brain to that painful spot or nerve and are making it worse. Those are the basic mechanics involved. You cannot let yourself "feel" the pain on an emotional level of any kind. You have to think of the brain as a source of potential fuel for those pain flares. If you use your brain to respond to the initial pain, it will send fuel to that pain site and make it worse. The attempt must be made to turn off the emotional response to the pain, and it will subside much more quickly. As with anything, count on it taking practice. I'm sure it's not easy to do at first, but I just consciously tried it, and the pain actually receded. Maybe this is what most people already do, and I'm just now figuring it out. I'm going to give it a shot for a while, especially now while I'm in the painful beginning phases of physical therapy.

[webslave]

Quite right. I remember that at some stage I worked out the same thing. I used to feel the pain, and say to myself on a subconscious level "Oh, it's hurting again, but it means nothing, probably just neuronal windup, stupid nerves" and then unfocus from it. A year or so later, it was gone.

[MajorSky1]

Yes, I've noticed I'm getting better at that conversation (almost word for word with yours) with myself. It's the longer flares that can get tough. But that just means remembering to keep at it, and practicing.