Redub's Progress Log

[Redub]

Still doing the assigned stretches and doing internal work 3 times a week. Internally I am finding less and less trigger points. I still can't say for certain if things are getting better since the baseline isn't consistent.

My wife (who is massage therapist) did myofacial release yesterday and what is interesting is when doing my right adductor I could feel it pull on something that went all the way across my pelvis into my lower abdomen, or at least pubic area. That's a good 6 inches away from where she was working. It didn't do this on the left side. This would actually make the urgency slightly worse. I think that might be a clue on what the problem is. She also noticed it was making a different area red but I forget where she said that was. It's hard to see how things attach based of of googling muscle charts but I will bring it up with the PT when I see her next week. I can't seem to reproduce it on my own. I think I will add using a massage roller on adductors since they are such a problem area.

Down to ½ a cup of tea for caffeine. I am going to try to stop caffeine this next weekend.

I've developed a bit of an insomnia problem. Realistically I've had it since the non-stop symptoms started 5-6 weeks ago but I have been using a combination of OTC sleep aids and my every 3rd day 0.5mg of Xanax protocol to get by. The OTC sleeping pills aren't working anymore. The doxepin that my doctor prescribed for sleep makes me feel like doo-doo the next day and for the next 2 days everything tastes like copper... and it doesn't do much. This has resulted in the last week being super sleep deprived. I actually didn't sleep at all last night which obviously sucks since I have to work today. I suspect the problem is that the hole I dug with the 0.5mg Xanax every 3rd day has gotten deep enough that I am getting some withdrawal symptoms (namely insomnia) plus with my major symptoms being frequency it's already very hard to sleep. A body does not want to sleep when it thinks it has to pee. It's time to quit taking the Xanax. I really need to get the sleeping issue resolved since so much of my bandwidth is already taken up with the CPPS symptoms, CPPS treatment, trying to keep a level head and trying to act like a functional adult. I don't have a lot of space for more problems at this time. I messaged my doctor about either putting me on an actual sleeping medication or putting me on Seroquel again which I know will make me sleep (albeit too much sleep).

I'll be glad to be off Xanax anyway since it has been causing a roller coaster ride. I always feel out of it the day after.

I am going to give alfusozin and oxybutinin one more week before I give up on them. So far it has only improved how often I get acid reflux. I suspect my next urology appt will be my last for this issue. I wonder how much my insurance paid for the urologist to just play a guessing game. I know it costed me over 300 bucks.

. Any accredited quercetin product hasn't really done anything for me either.

Running doesn't seem to aggravate anything but with being sedentary for 6 weeks, taking all that Cipro and the poor sleep running is discouragingly tough.

[Redub]

My primary doctor put me on amitriptyline (Elavil). She doesn't want to prescribe anything that I can get addicted to which means no sleeping pills. I didn't argue since Elavil might actually work on my symptoms directly while also making me sleepy.

Yesterday was the worst day I have had since the constant issues started 5-6 weeks ago. I usually don't have consistent pain, just frequency, but yesterday the pain was consistent as well. Elavil certainly made me calmer and I actually did get a decent nights sleep. My symptoms are still present and worse than usual, unfortunately. On a side note, I am having more non-painful muscle spasms in random areas which I am hoping is a good sign.

If I had to guess the flare up is due to either the myofascial release that seemed to directly affect a problem area, the not sleeping for like 40 hours or that I broke my Xanax cycle.

The next two days will be rough since it will be visiting a lot of family for the holidays which includes sitting in a car for a while. I would just skip it but it's probably the last one we will have with family before we move 2500+ miles away so I'll suffer through it.

Will update if treatment changes or after the next Pt visit next week.

Merry Christmas.

[Redub]

So a positive update for a change. Last week was my worst week in some time but on Saturday it wasn't so bad and Sunday I could almost believe things were fixed! Monday was a little worse and so far today isn't as good but I am still better than last week. It was very nice to see some improvement.

It's actually hard to find internal trigger points now where as before it seemed like they were at almost every direction on the clock (aside from 12/6 which is a no-go zone).

Current Treatment:
*Glute Stretch x2 a day
*Adductor stretch x2 a day
*Breathing Exercises x2 a day
*Foam Roll adductors
*Lacrosse ball Glutes
*Elavil
*Internal trigger points 3x a week

Other things:
*Standing desks at home (and as of today at work as well)
*Caffeine free for a week now
*No spicy foods

[webslave]

Sounds great, keep it up

[Redub]

PT was yesterday. She did comment that I had a lot of improvement in my adductors and.. internally. I can gauge if internal work has improved based on how awkward/embarrassing it is. Basically if I feel awkward it means things are doing good... because I am not being distracted by pain.

Overall my symptoms are better but they did go downhill a little since Sunday. Still happy about it.

I am going to lower my Elavil does from 25mg to like 12.5 and maybe even less. It has made my hunger out of control. Like super bad. I may even stop taking it altogether. I don't think it's the reason for the improvement it was just to help me sleep but since things are improving I can probably sleep fine without it.

[Redub]

Updates: Been off Elavil for about 5 days. No uptick in symptoms except for a minor uptick this morning which could be just the stress of having one of those days where nothing is going right.

Glad things are still overall better but really wish I had a fast forward button.

Nothing notable from the PT session this week.

[Redub]

I had a very bad flare up yesterday. The kind that has made me go to the ER in the past. I also had fallen into a deep crevice of depression that day. I took a Xanax at night, my first one in In weeks hours. At 930-ish I took the Xanax. I blacked out for about 15 hours. I have a copy off scattered images in my brain. Basically a whole day gone. I only remember taking one bit with how bad I was in, can't claim that I only took 1 and call it the truth.

Here are the pieces I have picked up.

1. My wife was super worried about me because I was up late, couldn't sit still, left the door open too, was stumbling and falling a lot and and she said there was water all over the bathroom. She might have said I didn't even open the lid.
2. I did play video games this morning with at least two people I can vaguely remember it and my one friend was generally worried about since he is totally out of it.
3. I don't know anything else. It should be close to being out of my system but I not sure I'll even remember this.
4. This event induced a bout of depression that is just as deep and dangerous as ever. Things are still messed up

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Try to isolate what is causing the flares. Anxiety? Diet? Alcohol? Spicy food?

[Redub]

I just PT the day before. I think my diet was the same as always. Friday started out poorly but was okay until symptoms kicked in hardcore. I am doing fine now.

Apparently I was still out of it when I wrote the previous post.

[Redub]

Okay, when i wrote the above a few hours ago I thought it was Sunday. I blacked out for 48 hours on .5mg Xanax. It was my first Xanax before Christmas. I don't have a history with benzos such as addiction or anything. I only used it when symptoms were bad and even then I limited it to .5mg(or .25mg) every 3rd day.

Fucking scary

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I blacked out for 48 hours on .5mg Xanax.

can't claim that I only took 1 and call it the truth.

You perhaps do have an addiction issue.

[Redub]

Maybe. The reason why I said I can't claim I only took 1 is because I know I took. 5mg Friday night but I don't remember redosing at all... but I don't remember anything so I can't really say but either I had to of redosed or it interacted with Elavil poorly. Anyways, they went through the garbage disposal yesterday and so now I have some very sedate bacteria in my septic tank. Benzos are off the table for treatment.

Back on Elavil since a flare up occurred a few days after I stopped taking it. I'm basically back where I started which kind of blows.

[Redub]

Yesterday my wife worked on my pectineus as per my PT's suggestion(again my wife is an LMT). She also did myofascial release on my right adductor. Anyways, now I got the golfball feeling in the perineum and urgency is way worse while sitting. It sucks but last time she worked on me it flared things up but after 4-5 days symptoms went WAYYY below baseline and stayed there until basically this past weekend. Hopefully that is happening again.

[Redub]

On Wednesday I started reading A HEADACHE IN THE PELVIS again and go to the Extended Paradoxical Relaxation section. I haven't really taken time to give it a fair shake and my therapist wants me to start doing some sort of meditation. Given how much time, money and embarrassing things I do to fix these issues it is stupid to NOT give it a fair go. Yesterday I did an hour of it and it was a very positive experience. Below are some key notes:

• After acknowledging problem areas and either relaxing them or failing to relax them, accepting them as tense and moving on to other parts of the body those problems area quiet down quite a bit. The moment I re-acknowledge them it comes back but knowing I can quiet things done by trying to relax some other part of the body is quite a tool to have.
• Spending time on the sensations of problem areas would often lead to other sensations like identifying muscles that are tight or even just a tingly feeling of relaxation
• After the sensation I was SUPER relaxed. It was a physical sensation in my chest, really. It's kind of like you have 1 or two of your favorite adult beverage and you start getting that warm feeling (but this time without any intoxication).
• I hadn't slept much in the past 4 days but that night I fell asleep easily and only woke up once to pee (this was my norm pre-CPPS)

So I am a huge fan and am going to dedicated myself to doing it an hour each day with the idea to eventually move to longer sessions to gauge the effectiveness.

Another symptom I have noticed is weak urine output. I don't really dribble until the end but like a week ago when I was about 70% better the flow was much... thicker/faster?

[Redub]

Symptoms have remained elevated. I tried coffee on Sunday and it made me uncomfortably jittery but didn't seem to affect my symptoms. I tried decaf the next day and my frequency was super high but in fairness my uhh... output was also high so not sure if it was actually a problem or just shedding some retained water.

I am up to 70 minutes for EPR and may go up to 80 today. I also use it when it's time to fall asleep since it helps ignore the 'but I gotta pee' sensation.

I had PT yesterday. My symptoms dropped down a bit after our appt. She noted my adductors are MUCH better. Internal is about the same which isn't too bad. I have had a lot of painful massages but her doing myofascia on my abs was hands down the most painful massage technique I have ever had. She wants me to:

1. Do breathing exercises while sitting and standing (I always do it laying down). The idea is if you are shallow breathing in your chest you are just raising your diaphragm and not your pelvic floor so we want to get the body to habitual belly breathe.
2. Get a cushion wedge for work
3. Try aloe vera supplements. This was just a suggestion but I am fine with spending 30 bucks on a possible treatment.

Lastly, I contacted my urologist about signing the MicroGen dX form. The reason I am revisiting this is I have had multiple blood tests that have indicated an infection but no urinalysis has come up with one. They aren't consistent either. I listed them below and as you can see I had 3 with the middle one being fine but the others indicating issues.

October 28
Abs Neutrophil Cnt high
WBC High (just barely)
Neutrophils High

November 16 2019:
WBC Normal
MPV normal

Dec 6 2019:
Abs Neutrophil Cnt High
WBC High
Neutrophils High
MPV low