Introduction:Mon. Dec.15th JoVo Chicago

[JoVoChicago]

I have no more life.
17 months of this chronic prostatitis / chronic pelvic pain syndrome has left me dispirited.
I have one chair I can sit in - on one hip - using the other leg to brace me.
I was disabled before this.
I also suffer from Panic Disorder.
I'm Diabetic with Neuropathy.
Severe Arthritis in both knees.
A mass of fibrocystic tumors in my lower back.
Today I made my final visit to a urologist.
As usual all tests came back fine.
I am so distracted from all of this I have a difficult time concentrating.
My Wife read me A Headache In The Pelvis aloud.
I'm so fortunate to have her.
I type in short sentences because it's just easier for me to convey what I'm talking about.
I also suffer from severe sleep disorders (DSPS & Circadian Disarythmia).
I am most often sleep deprived.
Sometimes I cannot leave my house for weeks because of the Panic/Anxiety disorder.
I haven't traveled more than 45 minutes from home since I was 17 - I'm now 46 years old.
I am broke because I cannot work anymore.
There is no way I can travel to Stanford in California.
I am hoping I can find advice here that will allow me to help myself from home.
My catastrophic thinking is through the roof.
My anxiety from the near constant feeling to urinate escalates to Panic sometimes.
I am so sick and wiped out from being ill for so long.
Please, somebody, give me some hope.
I started drinking the Brocolli Broth 5 days ago.
I've also been practicing RSA breathing exercises until I fall asleep - when I wake up I start them again.
It seems to be helping a bit...sometimes more than others...sometimes a lot - other times not at all.
Also: This past 17 month battle with these abdominal/pelvic symptoms are the worst and latest - but I've been suffering with this on and off for over 4 years.
I'm afraid to have sex.
My penis actually seems to go into "shrinkage" mode whenever I think of it.
I've been hiding from my friends because I am not me anymore.
They are used to a wisecracking, creative, topical, enthusiastic guy.
I feel like my essence IS my painful pelvis now.
It has become my identity.
Thank you...
Joseph

[webslave]

Ok, you have a severe case, but you need medications to combat anxiety first and foremost, so what are you taking for that?

[JoVoChicago]

I take 2 Klonopin daily and Melatonin to help me sleep.
I used to be on high doses of Klonopin plus Xanax and weaned myself down on the Klonopin and off of the Xanax completely, years ago.
I'm on Vicodin & Ibuprofen for pain in knees and neuropathy - My Gen Prac Dr. said - "just take more for the pelvic pain".
But I'm actually taking less now than I was 6 months ago.
I weaned down.
I was uncomfortable taking 8 vicodin & 3 Ibu a day.
So I slowly weaned down to 4 Vicodin and 1 Ibupro.
I take Flomax - which helped a lot at first - but not so much lately - although it could be because I fell off schedule for several days.
They had me on Levaquin for a full year.
It wiped me out.
I stopped taking it.
I take Actos for diabetes.
As well as insulin.
I've also taken any accredited quercetin product and Q-ural.
I also got a lot of help from a hot tub - daily.
But I live in the Midwest U.S. - so it's covered in snow now.
I actually had moments of zero pain in there.
Do you think it's possible to follow the Stanford Protocal from home?
Thank you...
Joseph

[webslave]

Yes, you can do it (in a fashion) from home, if that's the only option. Cold weather will make symptoms worse, so expect some relief come summer. Were you taking Vicodin before your chronic prostatitis / chronic pelvic pain syndrome started? Vicodin may make symptoms worse (effect on mast cells). May be worth switching to Ultram.

[Jay]

Hi JoVo,

I'm assuming by your user name that you might live in Chicago. If so, I wanted to make you aware of a great resource available to you. There is a physical therapist named Rhonda Kotarinos in your vicinity, and she is considered to be one of the authorities on treating chronic pelvic pain/pelvic floor dysfunction.

Here's her info:

Rhonda Kotarinos Physical
1 Tower Ln
Oakbrook Terrace, IL 60181
(630) 368-0177

In your shoes, I wouldn't hesitate to give her a call. I can't promise that she'll be able to help, but it certainly couldn't hurt!

Best,

Jay

[JoVoChicago]

How true about the winter weather making it worse for me.
In the Summer I was doing much much better.
Sitting in my backyard among the flowers my Wife & I planted.
Playing guitar or painting.
Talking out there in the warmth with my Children, Mother or other Artistic friends (I own an art Gallery in the city).
I felt worlds better.
Also: yes - I was taking Vicodin before this last bout of CPPS-but very small amounts.
I raised it when it hit me hard - but now have lowered it considerably.
My Dr. wants me on Morphine Sulfate as he is worried about the effects of all the Tylenol that is in Vicodin.
He believes that opiates are great meds for people with Chronic Pain & self control and non addictive personalities.
He says they get in and out of the body very quickly and leave almost zero residue.
Tylenol, Ibuorofen, Asprin are far worse on the body than opiates according to him.
He believes in breaking the pain cycle.
Thus - take enough painkillers to erase the pain long enough for the body to get a break from the pain.
He believes my body is stuck on pain mode and only when I can turn that switch off for awhile will my body simmer down.
He is not against Holistic ideaology.
I've gotten help from Accupuncture and Qi Gong.
My problem is that I'm unable to afford it since I cannot work a straight job.
I used to own my own Dental Practice.
But ever since I gave it up (due to other illnesses) I've focused fulltime on Art & Muisc.
I've made a glorified slightly better than *starving artist* living off of that work.
Always a dozen plates spinning at once though.
I guess that has to end.
I'm going to give that Phys Therapist a call & see if she accepts Medicare or Medicaid.
I'm an extermely disciplined person.
Highly motivated.
I'm desperate.
I'll do what it takes to get over this - and keep doing it until I'm well.
Thanks for the time guys...
This board is like a lighthouse.
I felt like I was stranded on the moon.
ciao...
Joseph

[webslave]

He believes that opiates are great meds for people with Chronic Pain & self control and non addictive personalities.

Please read fully :
viewtopic.php?f=9&t=3698

[JoVoChicago]

Well - I am in the process of weaning off of the Vicodin.
Once I'm off I'll try the Ultram.
I know I need a Painkiller of some sort - just to make it through day to day.
It's not only chronic prostatitis / chronic pelvic pain syndrome in my case - it is the Arthritis in my knees that is so very bad in Winter and Peripheral Neuropathy in my feet.
It's funny - my Dr. seemed much more worried about the large amount of Acetominophen in the Vicodin.
Over the years I've discovered my Dr. isn't a very "cutting edge" kinda' guy.
I guess he's just a regular Gen Prac.
But he is caring - even to the point of giving me his home phone number and inviting me to "call anytime".
He has counseled me through some rough periods and seems genuinely frustrated by his medical limitations to help me recover.
Anyhow - thanks for the heads up about the opiates.
Thanks...
Joseph

[carld]

Joseph...


Welcome and you are in the right place to get help...


First of all...Just reading your posts I can tell you that your anxiety and panic disorder...( that's what I have as well) is the fuel or cause of your CP/CPPS.

Believe me when I tell you that I have been to hell and back and had many of your symptoms and now after 3 years and a lot of work. I'm basically recovered at 95 to 98 %. and if that's where I stay...fine with me.

Recovery starts with anxiety control through cognitive work and the right meds. I use 5 mg of Elavil...I use to take 10mg...Lots of neurofeedback ( google it and find a therapist that does it ), relaxation, diet changes and finding a good PT ( you have one there)to deal with your pelvic floor dysfunction. Learning how to self treat your pelvic floor. The road to recovery is in your hands, not any doctor...

Stop taking the Flomax...Unless you have an enlarged prostate...Alpha blokers are of no use in treating CP/CPPS symptoms of feeling like you have to urinate all the time and a burning perineum...Believe me I know. Took them for a full year with no help!!

In the end....anxiety control is key and you will recover slowly. Measure your success by months and not days and ejaculate two times a week with your wife...Have her on top for now and relax the pelvis.

Ironically...the same personality that got you in this mess can get you out.

You will recover!!

[JoVoChicago]

Thanks so much Admin, Jay & Carl,
It really helps to not feel like I'm floundering alone.
I have a few people around me who can sympathize in regards to my pain - but that's nothing like empathy.
Hearing from people whom have been in this predicament is invaluable.
I not only think that the chronic prostatitis / chronic pelvic pain syndrome was caused by my anxiety disorders - but caused a general weakness of my immune system that brought on other things as well.
You see - I was in counselling for Panic back in 1980.
It was old school.
There was no relaxation exercises or anything reccomended to me.
The *cure* was - Grit your Teeth - White Knuckle It - Force Yourself - Push Harder - Don't Let it Beat You - just fight!
So out into the world I went - no medications - I'd literally tighten up my gut - flex my muscles and just drag myself uphill by my teeth through everything... punching, kicking - doing whatever it took to get things done.
I've been living like that (with the addition of Xanax & Klonopin when it came out) until about 4 & 1/2 years ago when this hit - when my Dad was dying in the hospital in a very traumatic way - and my mother had a massive Stroke because of it - I'm an only child - so it was all up to me - my Wife is a Goddess and helped me as much as possible - but, for the most part - everything was up to me - this Disabled guy with Panic Disorder & Severe Depression.
I began to feel pains in my gut and just guzzle Maalox - I put myself into withdrawal on purpose so I could be awake and ready - like a soldier for whatever next hit.
During this time my Art Gallery/Studio was being constructed and I was overseeing it all.
Everyday there were a dozen new problems that I had to solve.
But - as I was taught - I just "pulled myself up by my bootstraps" and faced each hellish new day "like a man".
So - yes - I now see (and feel) the effects of that...to put it mildly.
But here is a question - I know I have damaged myself with an overdose of stress and learning to live in a more "zen" fashion is a big key to recovering from it all - should I look at this as an injury that will just take time & technique to heal - or a disease that I'm stuck managing for my entire life?
So much of this reminds me of the beginning of my Panic Disorder when I was being rushed by ambulance to Emergency Rooms with very real feeling Heart Attack symptoms - after dozens of visits and tests with no evidence of heart problems - the pains went away, I stopped taking my Blood Pressure every 5 minutes - and the "Heart Attacks" stopped.
A very insightful Doctor - who I'd never seen before - popped his head into my little curtained off Emergency Room area the last time I was there for that with a model of the heart and lungs - he said that what I had done with my anxiety was tighten up the muscles around my heart and put them in cramp mode - the pain was real - but it wasn't dangerous - he compared the pain to muscle cramps in the legs - which I could relate to as I was pretty athletic back then.
Did I do the same thing once again - but just this time - to my Pelvic Floor?
I'd love to get as much feedback as possible from as many people as possible.
Thanks for everything guys.
Joseph

[JoVoChicago]

As I sit here now - I have very mild symptoms...perhaps a 1+.
Yesterday - I was at about a 7 out of 10 - the days prior - I was at everywhere from a 10 to a 7.
However a week or so ago I had a coupla' days in a row where I was at a steady 1 or 2.
On my good days - I'm frightened to move for fear of "setting it off".
What approach does everyone take here.
Seize the day and get while the gettin' is good - or be careful to not get too excited since this is just a temporary reprieve...and the more you go enjoy yourself - the harder the letdown is going to be when you're stuck back in it once again?
I hope these questions don't sound ridiculous - but I have had nobody to bounce this stuff off of until now.
Thank you...
Joseph

[webslave]

should I look at this as an injury that will just take time & technique to heal - or a disease that I'm stuck managing for my entire life?

This will be with you for life, it's part of your DNA, but it can be managed down to unnoticeable, so no biggy.

You are developing a pretty good insight into what's going on, BTW. I think you'll be fine. Keep reading, you're on the right track.

[webslave]

As I sit here now - I have very mild symptoms...perhaps a 1+.
Yesterday - I was at about a 7 out of 10 - the days prior - I was at everywhere from a 10 to a 7.
However a week or so ago I had a coupla' days in a row where I was at a steady 1 or 2.
On my good days - I'm frightened to move for fear of "setting it off".
What approach does everyone take here.

This condition waxes and wanes. The good days tell you that you can get better, so take heart. As you progress with treatment, the good days become the rule.

[carld]

I'm just going to repeat what Mark said...

This in very manageable and you can and will be healed but never cured...

The wax and wane is very typical and tells you that with work you can have more and more days with very light or no symptoms. Your stress goes to you pelvic region, like it does for all of us.

I think also the fact that you have come to a real place with real men who understand what your going through in every way, is a relief. There for you will find comfort in that and with that means a type of relaxation, which calms the nerves and relaxes the muscles and so forth...The key my friend is when you are having an off day...just ride it and know that you are going to have more and more good days.

Also very important marital advise for you ( if you don't mind)....Your wife is your soul here. Make sure her needs are met emotionally, even when you are having off days. She is the mother of your children and she needs you and your children need you. Try not to constantly remind her of your struggles...That's what we are here for because we are men all in this together to pull through...You will recover and live a happy life with more wisdom.

Best, Carl...

[JoVoChicago]

Thanks for the encouragement guys.
It means a lot.
I've started to incorporate the things I've learned from HITP & here into my life - slowly using a schedule I've made - and am journaling everything...so I can see what is working and what isn't...
I think it will also come in handy on bad days when I get freaked and want to rush to the ER again - I can look at it and remember the good days - and examine my tools.
I also appreciate the Marital advice Carl.
Absolutely not overstepping any boundaries with me.
I tend to go off on my own when I am doing really bad anyhow - kinda' like an injured animal licking it's wounds.
Strum my guitar, cry or RSA breathe depending on my current state of mind.
Furthermore - regarding the Marital issues - one of the things I did was invest in some good sex toys for the Wife.
You are correct - She is my soul - and I understand the importance of keeping her satisfied in that area.
When I'm not feeling up to it I can still "take care of business" without being in severe pain or injuring myself and worse than that trying to pretend I'm enjoying myself - and that's a big relief.
Thanks a lot again...
Joseph