Old Members

[Sleeper Service]

I agree - the site population is not representative of the chronic prostatitis / chronic pelvic pain syndrome general population. Also worth pointing out that Dr Shoskes' treatments were on a 'hard core' population with a median symptom duration of 3.5 years and an average of 9 and who had failed multiple prior treatments, which again is different from the general distribution - the median point in the UK sample looks to be around 2 years.

Bottom line is that everyone needs to find what works for them: no silver bullets, no easy rides. However, once you do find something that works your chances of near to full recovery are very good.

[webslave]

While chronic prostatitis / chronic pelvic pain syndrome can fade away with time, it usually does not, unless treated, and the exact breakdown of numbers and true natural history of the disorder is still unknown.

And of course when we say it "fades away with time", we do not take into account the measures people who experience this have taken. Someone could say that my chronic prostatitis / chronic pelvic pain syndrome just faded away over time, but I took all sorts of measures that do not amount to any sort of formal treatment recognized by the medical establishment, ranging from complete career change to minimize stress, to a period of internal self-massage (before anyone knew it helped), to dietary modification. All that and any accredited quercetin product got me to where I am today.

[garyholc]

Interesting conversation. I was speaking to Bill about this on Tuesday. He said that generally he finds that people do get better over time from this condition, then stop seeing him completely, but then he is giving them PT so this is of course helping them out. But highlighting muscle conditions, he said that with muscles, let them relax and over time they will sort themselves out without any treatment, but I guess in many of our cases, we are not giving the muscles this opportunity in our daily lives.

Thing that confuses me is that considering how many men get this condition, the majority of them get over it quickly and it goes, yet for a few it stays. What is so different in these men for it to go? Do they have less stressful lives, do they just ignore the symptoms get on with their lives and it goes? Are we making things worse for us by reading websites about other peoples problems perhaps or having the condition on our minds all the time....

I would like to believe that it does get better over time in the right circumstances, and that it will burn out over time, as it has done for so many people, but of course one can't forget people like Dr Wise and others who have had this for over 20 years. Either there was something in their lives causing it to get worse, such as work stresses etc. or there were other factors for it to last as long as it did.

For me though the most important thing is that I've now seen at first hand that this thing is fixable, as with all muscle complaints, something can be done about them, guess its just going to take a long time to sort out that's all.

Webslave, also, no disrespect meant here at all, but how do you know that all you did actually resolved your symptoms? How do you know that actually over time, your symptoms were resolving themselves and it was burning out over time. Do you ever have any relapses with this condition now? Just curious that's all......

[Sleeper Service]

As has been mentioned, no-one knows the true natural history of this disorder. My personal feeling is that there are genetic and behavioural factors to take into account here. Some people perhaps relax muscles naturally or are less susceptible to stress. Others have latent intolerances or allergies that get aggravated by CPPS. Fundamentally we are all slightly different and that's probably one of the main reasons why not every treatment works for everyone.

There are, however, a number of posters on this board who suffered for many years - in excess of a decade - before trying relaxation therapy and PT and whom then had major symptom improvement or complete resolution. In my mind this indicates that this was the treatment they had been waiting for which finally stop the instigating factors and allowed the body to heal. I think it's key to do this because if you don't stop the cause then you'll never get better. That's why it is vital to try as many sensible treatments as possible until you find one that works for you.

[webslave]

Spot on, Sleeper.

Webslave,... how do you know that all you did actually resolved your symptoms? How do you know that actually over time, your symptoms were resolving themselves and it was burning out over time. Do you ever have any relapses with this condition now? Just curious that's all......

Gary, good question. I know those things were pivotal because each one of them got me off a plateau and onto a whole new level of wellness. Until I tried them, I was not improving from the current level of health, after trying them things got measurably better, permanently.

I can tell you that the worst factor of all was the tense sitting. I was running a large, successful, self-designed and mostly self-coded computer system for a government department, a system that handled hundreds of millions of dollars in payments, with several people working for me. I answered 50 calls a day. I found myself dripping sweat from my armpits in a cool office, my heart racing, and my pelvic muscles tied in knots. When I finally gave it up, they had to hire a group of people to replace me. I regret to this day taking that job so seriously and working so hard. I ended up bedridden for a few months, and off work for a few years, and I never returned to that career.

[carld]

I can tell you that the worst factor of all was the tense sitting. I was running a large, successful, self-designed and mostly self-coded computer system for a government department, a system that handled hundreds of millions of dollars in payments, with several people working for me. I answered 50 calls a day. I found myself dripping sweat from my armpits in a cool office, my heart racing, and my pelvic muscles tied in knots. When I finally gave it up, they had to hire a group of people to replace me. I regret to this day taking that job so seriously and working so hard. I ended up bedridden for a few months, and off work for a few years, and I never returned to that career

Wow!! That says it all right there fellas...

1. Take control of your stress
2. Keep the pelvic environment hospitable
3. Avoid food irritants
4. Supplements that contain natural anti-inflammatories
5. Elavil low dosage to calm the nerves both physical and mental
6. Daily relaxation with moment to moment
7. Aleve (naproxen) as needed
8. A positive mental approach/zen if you can to life and show your love and gratitude to your family everyday.

Peace....

[garyholc]

Carl

I notice that you always recommend Elavil, and also notice how much better you say your symptoms are now 2 years on. I was just wondering, have you tried stopping Elavil now all together and seeing what happens or do you think maybe you are now dependent on it for maintaining a low anxiety lifestyle? Just wondered.

My job stress wise is ok, I just don't like it though, its makes me miserable, and I'm starting a new one in a week now which should hopefully be much better. Again, not too stressful, but it does mean sitting all day Mon to Friday.

[graeme]

One of the keys behind my remissions in the past maybe the fact they I stopped fighting this and accepted it a lot more,back in the day there was nothing more I could do pre-SP.

I was kind of on a level of thinking where I was no longer stressed with CP and just thought this is the card god gave me, I've just got to cope and do the best I can, which is different from giving in in a funny kind of way

T

[carld]

Gary, great question....I have stopped on 2 different times with no side effects, but decided for now that anxiety for me is the main cause of my onset....I can't speak for you but in reading your posts....you seem to be an anxious person like many of us here...No irony that CP/CPPS has an anxiety connection. In fact the last conversation I had with my urologist, who is part of the CPCRN (chronic prostatitis collaborative research network) in CP/CPPS, I asked him about how many of the cases he's dealing with here have an anxiety component prior to onset. His response (and I can't it remember exactly), but it was staggering how many men have anxiety and it's relation to this condition. I just have to look in the mirror to know this. I don't need a doctor to confirm this. They have been of no use to me anyway in my condition

So along with my hard work for 3 years of cognitive therapy like neurofeedback, relaxation, I decided to let go of my ego and try Elavil 10 mg — which is practically nothing in terms of dosage, considering the dosage for depression is anywhere from 50mg to 250mg but don't quote me on that. My doctor told me that my low dosage seems to help with anxiety because I'm a very hyper, happy-go-lucky, encouraging kind of guy. Ya, I have my blue days because I work long hours and miss my family, but that's a quality problem...See where I'm going here...My posts will prove that Elavil has also aided in my overall protocol but it's by far no magic bullet. Elavil has helped me indirectly. It hasn't stopped the irritation I feel at times etc....What I think it has done is eased my anxiety, so there for my symptoms, which are fed by anxiety, have eased and I have been healing. Controlling my anxiety levels for me is the most important part of my over all recovery and 2 years in to my onset I have many days where I feel 100% and my off days are nothing to dwell over and I can live with that. Hope that explains things for you....

[garyholc]

The only reason I asked is that because it is such a low dosage, and because you have been taking it for some time now, and perhaps your body is now used to it, do you think that maybe its use is just as a placebo now, and that you just feel less anxious for taking it even though perhaps it isn't actually doing much for you now. I just wondered thats all if you would notice a difference taking it and not taking it... and if taking it you feel better and less anxious just because you have taken it.... hope that makes sense lol!!

[carld]

The only reason I asked is that because it is such a low dosage, and because you have been taking it for some time now, and perhaps your body is now used to it, do you think that maybe its use is just as a placebo now, and that you just feel less anxious for taking it even though perhaps it isn't actually doing much for you now. I just wondered thats all if you would notice a difference taking it and not taking it... and if taking it you feel better and less anxious just because you have taken it.... hope that makes sense lol!!

Again, good question.

Unless I stop for a few weeks, I will not be able to tell you. Sure there is security if I'm taking something that is helping me. I'm sure if I were to titrate down to 5 for a few days and stop like I did before, I would be fine. I did that but noticed around day 7 that the same type of anxiety feelings I have had say during sleep and waking up came back one night . I would have these episodes on and off for over 15 years since my early 20's. I believe the combo of my cognitive work and Elavil help keep those physical feelings under control.

Now yes 10mg is very low....but my shrink once said that sometimes low doses of a drug that's intended for something else at a higher dose can be effective for something else. In my case the low dose Elavil is helpful for anxiety VS a high dose for depression. This is all speculative but in the end I'm in a great place so "if it ain't broke, don't fix it" kind of vibe I'm in. Do I plan to stop taking it some day??? Don't know....I live in the moment now because that's all I have....Something I think you may consider doing as well my friend.