Newbee Introduction - Sorry, It's Long, ...

[harpo-rider]

Hello everyone, figured it was time to introduce myself and start asking questions as I have been silently, painfully lurking in the shadows for the last couple of weeks. I only stumbled upon the site at the guidance of my PT in San Francisco. I feel that I should probably fill you guys in as to who I am and what I’ve done to myself which could (Definitely) be a very big part of why I’m here, but also why I have the 2 questions I have. I can honestly say that I don’t think it was stress that caused my CPPS. There is a lot to say so I’ll try and be as brief as I can without leaving out important details. Sorry though, it will be long. Here goes. . . . .

Sports I do avidly include bicycles, (2 rides a week, 1 one hour road ride and 1 three – four hour mtn. bike ride) motorcycles, (now generally only about 4 or 5 track days a year, just too painful) snow skiing, (maybe 6 or 7 days a year) hiking (when ever I can’t ride) and lifting weights. (at least 3 times a week combined with tons of stretching) Weights started as a means to stay fit but now are a necessity that allow me to stand/walk upright, work and still do some sports. The muscle is all that holds together the broken pieces. In 1991 a really bad motorcycle/racing accident left me with 2 broken vertebrae (t11 & t12) which are at the center of a 6 vertebrae fusion (Herrington rods) in my center back. Currently also diagnosed with the 3 lowest disks as herniated and a spondylitis that’s continuously separating. My hip is slightly rotated forward on the right side and no matter how hard my chiropractor works, that’s where it’s gonna stay. I also seem to have a history of extremely weak joints (not exactly the perfect match for and adrenaline athlete) and have had numerous groin injuries.

So that’s how I figure I probably ended up on this forum but there’s a little bit more to the story. In 1998 I WAS diagnosed with Bacterial Prostatitis. Took a year for it to go away, Yippee!! But then it came back, Boo Hoo. Long story short, from about 2002 or so, I have been plagued with numerous bouts (flare-ups) of what was misleadingly diagnosed (by 4 urologists including Dr. Cometer at Stanford) as NON-Bacterial Prostatitis. For Christ sakes, couldn't 1 of them get it right and at least get me pointed in the right direction a long time ago. Anyhow, I just lived and dealt with it. After all, when it did hurt, and that wasn’t all to often, it only hurt when I sat in the office chair to long, certain movie seats, or was upright in the motorcycle seat. Keep in mind, I could still work, (as a flooring installer) ski, ride the bicycles (always had ergonomic seats) have sex (usually) and function at a pretty high level even with the injuries.

Other than the sports and job, ...LOL I live healthy lifestyle. Only minor caffeine, alcohol, no drugs (except for a few pain killers as needed) healthy eating, good sleep, relatively low stress, Blah Blah Blah.

Early this spring I started to hurt a little bit more than usual. Went to Stanford (Dr. Cometer as previously mentioned) got the run around and numerous prescriptions. Nothing was helping. He finally sent me to a PT in San Francisco and it was then, and through her that I finally started understanding what I actually had. She’s why I’m here on this board. I’m 1 month into therapy, along with chiropractor, acupuncture, Quercetin, Ultracet, Celebrex and I’m still getting worse by the day. Walking, standing, working, hiking (vigorously, like Half-Dome) the mtn. bike, ... used to all make it feel better. Now nothing. Constant pain. I’ve given everything up including work to try and get past this. Never imagined it could get this bad.

This Thursday I have an appointment with DR. JEROME M WEISS here in San Francisco at my PT’s recommendation. I’m not looking forward to what awaits me at his office. Regardless, after speaking on the phone with someone at his office last week when I made the appointment (I refer to it as the “Worst Phone Call Of My Life”) I was sort of lead to believe that in order to beat this thing I was going to have to give up everything I know. Motorcycle, mtn. bike, weights, any repetitive activity, any weight bearing activity, .... MY JOB. ........ For Christ sakes I’m only friggen human!!!!!!

So now after that long drawn out melodrama, the 2 biggest questions I have:
1) Knowing that mtn. biking is the only sport that I can still do that actually acts as positive therapy for my back and all my other broken pieces (and my mind), ... And I love it more than life itself, ... Is there anyway that I’m ever gonna be able to get back on without crippling myself?
2) I’d love to quit my job as a laborer and get a desk job, but how the heck am I supposed to do that when I can’t even sit down?

Thanx Folks,
Joe

[webslave]

Forget about the bacterial prostatitis diagnosis, unless it was backed up by a lab test showing the bug (and not Staph. which is just a contaminant). The first episodes of "bacterial prostatitis" were the first signs of this problem.

Like many with this disorder, you have a compulsive exercise regimen in your life, which you'll have to abandon, at least for quite a while.

The traumas and diseases to your spine and strains to your groin have all contributed, some more than others.

As a flooring installer, you probably squat up and down many times a day. Am I right?

[Jay]

Hi Joe,

Webslave pretty much hit on everything I would've said. For the time being, I would just encourage you to try and take it easy. I know how dreadful it is to have things getting worse, but they can get better, too.

I'm glad that you were finally able to find your way to physical therapy for this. Seeing Doctor Weiss probably isn't a bad idea, either. He thinks outside of the box when it comes to chronic prostatitis / chronic pelvic pain syndrome and has been a longtime proponent of the neuromuscular solution (among other things). He can, at least, rule out other causes without leaping to bacteria and other such dated nonsense.

[harpo-rider]

Forget about the bacterial prostatitis diagnosis, unless it was backed up by a lab test showing the bug (and not Staph. which is just a contaminant).As a flooring installer, you probably squat up and down many times a day. Am I right?

Yes, squating, bending, lifting, crawling, etc., etc.,.... So should I also asume that squatting is bad.

And how come certain forms of excercise used to make it completely go away. 1 month ago at Yosemite I hiked up Half Dome, (round trip about 8 hours) early Saturday morning. There was absolutely no sign of pain until late Sunday afternoon which was 2.5 hours into a 4 hour ride home. 1 Vicodin and feeling better. Mild pain the next 2 days.
I just don't get it. At this point everything hurts.

[webslave]

A lot of guys have reported that exercises like the leg press (similar to squatting) can exacerbate symptoms:

[extreme3]

As far as my experience with exercise, I have noticed that squatting or leg pressing heavy weight is a definite no-no. Bicycling seems to be ok but this varies from person to person.

Upper body weight lifting doesn't appear to exacerbate symptoms for me. I concentrate on lower impact exercise for the lower body such as walking and especially stretching. I've started doing some exercise with an inflatable exercise ball for working the core and legs. This actually seems to help. Low impact is key.

[harpo-rider]

Thanx guys, Yes, leg-press is the worst. Immediately hurts the groin muscles and everything else that's attached. I haven't done any squatting, leg press, or anything else requiring heavy weight for the legs for quite some time. Leg work-outs consist mainly of PT type stuff for stability (lots of balls, balance, and stretchy bands), stretching, and then actual muscle work comes mainly from the sport itself.

Problem is, now everything hurts. Can't seem to find anything comfortable except lying down, usually flat on my back. Tried to take the dog for a walk yesterday, all flat, about 2 miles. Burnt most of the way. Think I'm done doing anything for a bit. Out of work for the next 2 months (having a knee surgery next Monday) so I think this is gonna be my best chance to relax, go to PT, and get a hold of this thing.

PS. Just came back from my PT. She thinks that Dr. Weiss will help. Hope she's right. Find out on Thursday.

[carld]

Harpo-rider,

Welcome...Your symptoms are very similar to mine. You have done some major stress on the whole pelvic region and you have to lay way low for a while and let this all heal...You are charging very hard right now and not in a relaxed way.

You are in the perfect place to be able to see Dr. Wise and do the Stanford/Wise-Anderson Protocol full blown because of where you live and give your self 2 years or so to recover...Believe me I know. At my two year mark I was able to start doing all the things I love like drumming regularly with a special drum throne with a back rest and room for my perineum and surfing, hiking, power yoga and so forth...But this condition is ironically caused by our hard charging personalities and injury...But it's our mind set that can get us out of it to because we are all hard workers or perhaps type A men.

Read up here and you will slowly recover, but as hard as it is, you have to lay low for a while. Pain is our teacher...Mark said that once, and I will never forget that!!

Then when you are ready, charge hard in a relaxed way...What I mean by that is do the things you love to do but keeping the pelvic floor loose and relaxed and unclenched and the mind calm and at peace with where you are at in your life because the moment you are in is all you have.

I also find it interesting that you say you never really felt any stress...But your thrill seaking personality and intensity and desire for adrenaline would have me think other wise.

Your in a good place for help, keep us posted.

Peace, Carl...

[webslave]

Harpo, do you use any chemicals in your job, especially ones that smell strongly or are marked as volatile and/or combustible or carry warnings about inhalation?

The reason I ask is because there is a subsection of sufferers whose cases started with an exposure/s to toxic chemicals (chlorine, pesticides, volatile organocarbons, etc).

[harpo-rider]

Harpo-rider,
I also find it interesting that you say you never really felt any stress...But your thrill seaking personality and intensity and desire for adrenaline would have me think other wise.
Peace, Carl...

OK, I will not deny intensity at time of activity, I've actually seen several pictures of my self in competition/activity and you can definitely see the intensity on my face. That' just sort of the way it has to be in order to not get hurt. That said, I do almost nothing competitively anymore and the one thing I do, I don't do to win, I just do to have fun. However, on a daily basis, I would think that I have no more stress than the average Joe. I wake up no stress, most of my jobs = no stress, crawl into bed most nights no stress, lights out and so am I. I've given up easier, better paying jobs just because I didn't want the stress. I'm definitely not type "A", ..... maybe "B" or "B+"

So I'm ready to do what ever it takes to get beyond this crap. Yoga, meditation, whatever, .... But I still can't help but wonder, isn't it just the slightest bit possible that all this crap going on in my pelvic floor has nothing to do with my personality (stress) and everything to do with how twisted and pulverized my back, hip, and groin ligaments/tendons are? Again, fully willing to except all remedies for fixing this mess but just wondering about the possibility of a completely physical cause.

Harpo, do you use any chemicals in your job, especially ones that smell strongly or are marked as volatile and/or combustible or carry warnings about inhalation?

The reason I ask is because there is a subsection of sufferers whose cases started with an exposure/s to toxic chemicals (chlorine, pesticides, volatile organocarbons, etc).

Yes, we definitely use chemicals, glues, hot melt tape but as far as I know just about everything (for the most part) is politically/environmentally correct and has been so for quite some time, ...I Think!
And, I know a lot of old floor guys and no one I know seems to have this crap going on. Hmmmm, ... but even if they did, they probably wouldn't tell me. Hmmmmm again!!

Again, thanx for the input guys.

PS. PT and Acupuncture today. I definitely had fingers and needles shoved into places that no human being should have to deal with, ever. It was rough day, ... but I'm sure you know.

[webslave]

If you are inhaling chemical fumes on a frequent basis, you may have to change that. Not everyone is affected by chemicals, but those that are can be severely affected.

The owner of a website for women with female chronic prostatitis / chronic pelvic pain syndrome (called IC/PBS) had her case start after a heavy chlorine exposure. I was exposed to the pesticide Dursban in my workplace (worked over the weekend while they were spraying the building). Here's some data on that chemical:

In 1994, CBS TV learned that DowElanco chemical company had withheld hundreds of reports of adverse incidents involving the common pesticide Dursban. Dursban is an organophosphate insecticide which is a nervous system poison widely used in agriculture, homes and schools. It became the termite poison of choice after the banning of chlordane in the late 1980's and was used around millions of homes. Public interest advocates had long argued that EPA should revoke its registration. EPA said it did not have enough evidence to take action.

Pesticide makers are required under the federal pesticide law (FIFRA) to submit adverse effects reports to EPA promptly. DowElanco had reported some but not all incidents for about ten years. Only when CBS was about to broadcast a report on "Eye to Eye with Connie Chung" based partly on EPA's files did DowElanco submit the additional incident reports. Most related to personal injury claims that might involve litigation. Effects documented included persistent neurological problems including peripheral neuropathy, numbness, muscle weakness, headaches, disorientation, depression, asthma, birth defects, and multiple chemical sensitivities (MCS).

EPA considered DowElanco's action in withholding the documents so severe that it assessed a record fine of $732,000. The company appealed and an administrative law judge found the withholding of information so serious that the fine was actually increased to $890,000 in August, 1995. The company settled for $876,000.

The new information, though long delayed, was critical in restrictions on Dursban announced last year. Though it is still available (check labels carefully for chlorpyrifos!) the registration for most of household uses are now banned, heavily restricted, or being phased out. EPA has allowed the use of existing stocks for termite control.

Thus, the practice of cover up in the industry is not some ancient practice but one which affects products, and health, today.

Another case;
https://ucpps.men

Take heed.

[superuse]

yada yada yada ..bicycle.. yada yada ...weightlifting... yaada yaada yaada can't stop biking/weights as it is my life ....yada

Same profile of 70% or so of everyone who shows up here. Read my signature at the bottom and thru my posts for some info you may find useful.

[mleach350]

Superuse,
I know that you have a great deal of experience and information regarding this condition and have offered a lot of valuable insight on these forums, but I have to say as a fellow newbie that enjoyed cycling, you come off a little harsh when it comes to the running/cycling/weightlifting topic. People that are new here are frequently dealing with an overwhelming amount of questions about their life and what the rest of it will look like. I know I was mentally a mess when I came to this site and you immediately locked on to my cycling comment. The thought of never being able to ride a bike with my children, or go on a family ride with my Dad and brother again really bothered me and really depressed me further. It wasn't a compulsive excercise problem, rather a coming to grips with a changed lifestyle problem.

While I agree stopping cycling or running or whatever else you are doing is seemingly necessary for a recovery, and I have done nothing above a brisk walk for 3 months, I don't think it's fair to continue to tell that you people that you can never do these things again. I have seen more than a few examples of people on here that have returned to cycling/running, etc. without flare ups and they offer me hope for me future. I think a healthy dose of reality is needed for newcomers but I think a little optimism and hope for resuming some activities that make people happy is also extremely beneficial to their mental state. I don't know, it's just my two cents and maybe people disagree but I thought I should say it on the behalf of other new people here.

[harpo-rider]

yada yada yada ..bicycle.. yada yada ...weightlifting... yaada yaada yaada can't stop biking/weights as it is my life ....yada
Same profile of 70% or so of everyone who shows up here. Read my signature at the bottom and thru my posts for some info you may find useful.

Well, I guess every forum has one. Clearly, your the "one" here. Thanx for the warm welcome.

Superuse, I think a healthy dose of reality is needed for newcomers but I think a little optimism and hope for resuming some activities that make people happy is also extremely beneficial to their mental state. I don't know, it's just my two cents and maybe people disagree but I thought I should say it on the behalf of other new people here.

Ditto :thumbup (OK, some smart computer dude needs to implement a "thumbup" smiley)

[carld]

:thumbup:

I think what superuse is really trying to say is that your symptoms and story is very common and that over time and hard work you will be well again...He means no harm

Superuse...I'm not trying to speak for you brother...but I know what you are saying and it's really important to make sure new members are given lots of true encouragement. Because we have all been there when we first joined this site looking for support and answers from fellow CP/CPPS men.

This thing effects the very core of our maleness and it's so important not to come off as , "ya your story has been told a bunch of times and it's no big deal, join the club, we are all suffering"...It is a big deal and each man has their need to be heard and understood with our full respect...That their story is important and unique.

Just my opinion...