So...the running thing...

[chath]

I've always loved running as a way to stay in shape. I started way back in the 4th grade and ran competitively for some time in College too. Once chronic prostatitis / chronic pelvic pain syndrome really hit me hard I hung up the shoes to concentrate on healing. Now that I'm 10 months into the SP I feel I've made great progress on dealing with chronic prostatitis / chronic pelvic pain syndrome and I've tried to hit the pavement again. The problem is, if I run only 3 or 4 times in a week my symptoms pick right up. Not as intense as before, but they are there and they are discouraging. So here's my dilemma, continue running because it makes me feel good, or stop running because at the same time it makes me feel bad???!!! So frustrating.

Other question...anybody else experience this? If so, were you ever able to get back into the habit of running without throwing your pelvis out of whack?

[superuse]

I know for some this is getting old.... but read my posts.
(also post this under So.... the biking thing (especially), So... the weightlifting thing, etc)

Realize in addition to this if most of the adult population were forced to do 1/3 of the exercise most chronic prostatitis / chronic pelvic pain syndrome types routinely (did) they would consider it a human rights violation. The concept of only feeling "good" while doing it while most of the population would pay to avoid it, means some compensation mechanism may be involved, especially given the misery, loss of dough, etc many have suffered. The PN, PNE, chronic prostatitis / chronic pelvic pain syndrome boards are dominated by amateur exercise aficianados with sit down jobs, some suffering crippling pain for years, with tens of thousands spent in medical and possibly hundreds of thousands in lost wages and productivity , quality of life etc. Complete elimination of exercise hasn't even helped and some are on disability.

The compulsive aspect can be overwhelming. One individual I have conversed with knows his problem originated from his years of 100mi/week cycling, has suffered for years, had injections, tests, operations, painkiilers, psychiatric observation ,PT (after the op unfortunately) ,lost a fortune in wages and family life, and has continued cycling (on a modified position recumbent bike) throughout ("never surrender" part of his sig) Others have mentioned their life would not be worth living or something of that sort without the offending activity. This is irrational.

While pelvic pain with a sit down job and heavy exercise isn't common, obviously if one is here it happened to you and it isn't working out. If amateur or semi pro biking alone could be banned more than half the men would disappear from these forums and a big chunk of the ladies too. Ban weightlifting, running and a few others and almost 70% of the men and possibly more than half the ladies think a levator ani or obturator internus are star systems found by the Hubble telescope.

If your lucky enough to totally get rid of the thing dump the exercise, find new hobbies (the golf course is popular and where business is done) and make love not war.

Good luck
--jjf

[tamdc]

That was a great post, superuse.
Once I found out I had CPPS, I was determined to eventually get back on my bike and get back to doing something that I loved.
After months of PT and following SP techniques (moment to moment relaxation, etc.), I felt ready for the bike.
The hardest part at first was the psychological aspect, thinking that bike riding "caused" the chronic prostatitis / chronic pelvic pain syndrome and that biking would just re-aggravate my symptoms. While I of course did experience some flare-ups, I didn't let it stop me from cycling altogether. I gradually increased my mileage to where I am today -- essentially where I was before I ever had CPPS. So for me that means cycling 200+ miles per month.

If I were you, I would try not to mentally equate running with pain/CPPS symptoms. It's hard to separate the two, but you can overcome this activity=pain association. I'm not 100% there yet, but I've had plenty of times where I've been cycling and thought, "Uh-oh, I am going to pay for this later today." But later that day and the next, I didn't have the expected symptoms! Once that happens, you will gain confidence that running doesn't always cause symptoms later.

So, run!!! I would start slowly to just get a "feel" for it, then increase your mileage gradually.

[chath]

Thanks.....really good information. I've tried to get back out there and run a few times now and it's just not happening. The most recent attempt left me with a constant urge to urinate. ARRRR so frustrating. Super might be onto something. At some point you just have to move on and find other activities. Plenty of people have to stop whatever their chosen sport or recreational activity for other reasons, too, this might just stop me in my tracks.

[webslave]

It's also worth noting that as a group, our cortisol levels are low when stressed. Cortisol is the body's own natural anti-inflammatory. Strenuous exercise is a stress that draws down cortisol levels. So it can exacerbate the hypocortisolism (low cortisol), leaving even less anti-inflammatory and making everything worse.

I suggest walking, up to an hour a day when well, but if you are bad enough to have fibromyalgia and/or CFS, avoid exercise completely for a few years.

Mild exercise has a small to negligent effect on salivary cortisol levels, but intense exercise has a big effect ("only exercise of high intensity and long duration results in significant elevations of salivary cortisol." PMID 11991783)

[superuse]

The hardest part at first was the psychological aspect, thinking that bike riding "caused" the chronic prostatitis / chronic pelvic pain syndrome and that biking would just re-aggravate my symptoms. While I of course did experience some flare-ups, I didn't let it stop me from cycling altogether. I gradually increased my mileage to where I am today -- essentially where I was before I ever had CPPS. So for me that means cycling 200+ miles per month..

I really don't know what you mean by this. The bike (probably in addition to other lifestyle,genetic and employment issues) DID cause your CPPS. Many men had one or two remissions for several months or years before the "big-un" (difficult to resolve) hit. Others had a 2 week-month relationship with an exercise bike in the gym and have been laid up for years (although many were weightlifting or running also). Many rue the day they did not heed the warning and remission(s) they got and quit then. Others rue the day they got on the bike for one month and got no remission. Some rue the day and continue to compulsively cycle on significantly modified devices (our patient mentioned before). Different exotic seats, etc seem to be inconsequential. What percentage spin the wheel and gamble and get away with it I don't know.

This is not a common pain syndrome. However once you show signs of it, and are heavily into cycling (mainly) motocross (much less) weights and running you know you are prone. There is no doubt you are playing a game of russian roulette. Whether the revolver has one chamber out of 3 or one out of 35 loaded It would depend on fate and the individual. This would be a poor gamble if the payoff were a definite $500000 house or some prize in a few years but the payoff is nothing but hours of sweat with any fitness gain useless with the counterbalancing possible serious health problem.

There are many that have contemplated the irony of their hundreds of thousands of $$ economic loss, possible disablility status, their thousands of hours with the cycle, weights or running shoes only to see some 58 year old 250 lb guy who's last encounter with "fitness" was obviously playing dodge ball in the gym in high school happily sitting with his family at a restauraunt, or such , engaging in activities and what not and driving off in a very expensive car. This is not anti exercise, but there is a specific health issue here.

By perusing this situation for years If I could forward many messages from cyclysts like this one to some sort of "global" bullitin board, consisting of the 3000 (at least) surgical pn patients, the 20000-50000+? others with hundreds of thousands of obturator/pn/piriformis injections, physical therapy etc all involving solely the cycle alone you would likely get one piece of advice by the thousands:

If you get a reprieve, don't risk it. Take the GD bike, its wonderful magnesium frame, a blow torch, and make a piece of modern art out of it.

I gradually increased my mileage to where I am today -- essentially where I was before I ever had CPPS. So for me that means cycling 200+ miles per month

Re read my part of the message about the compulsive aspect of this. One fellow (surgically acquainted with the other crippled cyclist) actually had a (recumbent?) set up where he could cycle **while laying down on his stomach** because of the inability to sit anywhere much less a bike seat. I have no Idea where some of these people are now, some posts ending 2 or more years ago.

Obviously, if you are a weightlifter or runner, you have to contemplate this too. Especially the 10 rep to near max squat folks, and the forsaken 45 degree hack squat and universal seated stack press machines (with ergonomics from hell) which almost seem to show up in 10 percent of posts by themselves.

The cortisol situation mentioned by webslave also may be pertinent, any heavy exercise could exascerbate the spasms, cold sweats, fever, fibromyalgia, ibs and other symptoms people may be experiencing.

As usual good luck to all
--jjf

[tamdc]

superuse, you're entitled to your opinion...and my opinion of your opinion is that it's crazy talk.

I would advise you to reread HITP. Cycling can be a trigger for CPPS, but the underlying problems (muscle tension, anxiety, etc.) are already in place. Having dealt with those issues, and undergone months of PT and evaluations by various doctors (including the co-author of HITP, Dr. Anderson), I was given the ok to get back on my bike. So I did. Their caveat was that if my symptoms started to return and get progressively worse, get off the bike. Common sense, right?

Well so far things are A-OK. Will things get worse? I've ridden 800+ miles in the past 3 months and I'm feeling fine -- as fine as I was before CPPS. Maybe it's because it wasn't the cycling that was the problem, but other factors like the fact that I was a full-time "pelvic tenser". I recognize that now and I've worked to overcome it. I believe that was the big issue for me, not cycling.

CPPS is not life-threatening, and can be overcome with the right treatment. That's the attitude I adopted. I am not going to let it radically change my life. I think your post represents the worst kind of catastrophic thinking and is not helpful.

[webslave]

My opinion on this is that it's not the exercise per se that causes pelvic pain. However, people who compulsively exercise a lot, in a ritualistic way (they have to do their exercise regimen or look out), are suffering from a mild (?) form of Obsessive Compulsive Disorder (OCD), which itself is a anxiety spectrum disorder. I see anxiety disorders in most chronic prostatitis / chronic pelvic pain syndrome sufferers, and I am still amazed this has not been studied more (although since this topic is seen as a purely urological topic, no wonder).

The fact that most of us have issues with stress tolerance and anxiety, and then some of us overuse physical activity as an addictive form of release — all of this has implications for cortisol levels. If we drive cortisol levels too low through worry or stress, and then add cortisol-depleting heavy exercise into the mix, we find ourselves in real trouble.

I like to think that we can continue to use things like bicycles in a balanced way. Indeed, with the coming of Peak Oil, we may all have to use them soon.

[Jay]

I think there is a healthy balance somewhere in there. We don't want to exercise too much, but at the same time, a totally sedentary lifestyle presents other problems.

Personally, my physical therapist suggests walking and swimming for me. It can be hard to get those walks in on those scorching Floridian summer days, but I'm trying!

[chath]

Interesting thoughts there from the webmaster. I never really considered my obsessive running as a cause. Thinking back, if I didn't run for a day it would really bother me. I would stress out about running, needing to run, worrying about fitting it in. Once I started grad school I think this may have forced a culmination of stress for me. I had to work my way around a full time job (which was stress stress stress) on top of going to grad school and forcing 3 miles a day out of myself. Hmmmm maybe too much. I knew I was too anxious in general, but I don't think I ever thought I was stressed. But maybe so? It's depressing to think that you have to limit yourself.

Right now, I'd love to get up a 5am, run a shit ton and then hit the day with some vigor. Maybe it's not for me. Arrrrrrrrrr does the body hold the mind back? I always heard that it's mind over body. Not in our case, I guess.

[webslave]

It's depressing to think that you have to limit yourself.

This is a key point!

You do have to limit yourself. You are living beyond your body's biochemical budget. You have to find a way of changing either your lifestyle, or thinking style, or attitude to other people, to work, to life itself, so that you're whole being is more relaxed all the time, every day.

For me, this involved a radical change in work and living style. I changed my career, lowering my stress levels drastically, and even then recovery took quite a long time.

I was depressed about this change for a while, but now, looking back, I'm happy with the decision and realize it was absolutely required and inevitable.

[superuse]

For many exercise aficionados with pelvic pain, I recommend giving themselves the following test:

Concentrate and pretend 10 (world class) doctors have have assured you that in order to live you had to give up all exercise. Everything great, no pain, sex great Health good, $$$ career, even a signed affidavit from allah to die at 99 years old with great health in the saddle with a young blonde gal etc. Just no exercise. If you panic almost like you've been given a terminal cancer diagnosis or would feel like Stephen Hawking steering a wheelchair with your eyeballs there's a problem. Anything of the sort "What would life be worth living without my bike-weights-running-whatever" is problematic because: (even Hawking has a family, teaches for 30 years, books lectures and may be outperforming many of us)

1) It is obviously irrational
1a) If your concept of catastrophic thinking or catastrophe is giving up a bike or weight plates you lack imagination.
2) 80 % of the adult population would probably consider it a crime against humanity to be forced to do even 30% of some exercise routines.
3) There are guys tonight in your downtown area with about 20 or more extra pounds to spare trying to out-tip each other with $100 bills to bang the waitress on the way home, as the many hours some have spent on exercise they've spent building businesses grossing hundreds of thousands if not millions. Their IQ (and grades. degrees if any) is/were probably lower than yours.

4) The exercise (cycling mostly) and sitting job (with a pelvic tensing nature) is the largest risk factor with chronic prostatitis / chronic pelvic pain syndrome and has brought you to a site like this (with good info) or worse( with bad info). Others (a minority) may have cycled, lifted etc and done damage not relevant to Wise's protocol

4b) With chronic long term pelvic pain being uncommon, about 2/3 of the sufferers being women, and about 1/2 of the 30 percent or so remaining men having something to do with a bicycle, if you're a male and got here especially without the help of a bike you aren't lucky - so you may want to quit relying on it by pushing your luck with the heavy exercise.

Read webslaves observation above about obsessive exercise and behaviour, read my bottom signature, posts (in January etc) about finding new self-worth mechanisms for a (long) while other than exercise.

Some may need to re-evaluate the Alfred E. Neuman view of anxiety many of us initially confront (What? me anxious?) After some perspective one may come up with some issues posted above (I do tend to go apeshit if I don't run or bike my 3. 745 -100. 844 miles per day, If my desk isn't absolutely so. . ., the times I laid into my ex when my shorts weren't stored at right angles to my socks despite the provided protractor. . . obviously some levity here)

Read it, take it for what its worth, and if several want to catagorize it as "crazy talk", right up there with the aluminum foil recommended in your ballcap to stop the KGB signals from controlling your brain thats your prerogative also I guess. (everyone knows its Bush/Cheney doing that now anyway)

Good luck
--jjf

[webslave]

Superuse, that was amusing, thanks, and some very good points raised.

:laugh:

[yorkere]

This thread has provided some insight to me; very valuable, I think. Many thanks!

[gmccormack]

Superuse,

You basically decribe me word for word in your post (think your still active on this board). I am an investment banker sit probably more than 50 hrs a week, tense the hell out of my pelvis with every tick of the market, workout 7 days a week (primarily heavy weights), getting my MBA, just got engaged...

You gave me a hard lesson.

I have very similar symptoms as you, not sure if yours are updated/changed. I am going to Stanford in March. Your advice to me would be cut out the weightlifting, to start and focus on relaxation, PT. I am still very new to this, my onset exploded in November 2008. To be honest, I liked my stressful life, I like being a type A personality, but feel at 28 that must come to an end if I wish to get well.