Re-occuring flares

[GP2]

It has become clear to me that perhaps the most emotionally unsettling experience for most men is flare - ups after months or years doing well. It happened to me twice. At first this factor really put me off helping myself get better as I just thought "what's the point if it only returns?".

However, through extensive research on this forum I have reached a few conclusions -

1. Those men who do more to treat themselves (particularly the SP / trigger point work) stay better for longer & have less severe flare ups years later. Some examples being - TK, Twerges, alChicago, Dell, Ejango87, the moderators & many other men.

Conversely those men who do become symptom free but perhaps do little or not as much to deal with the underlying cause of their condition are more likely to post back with a flare up in a few years time. Examples being - Gabriel, DUKE, Benzo, Richard N) I hope nobody sees this as in any way an attack - there is absolutely nothing critical about this analysis!

2. Those men who continue to stretch, avoid stress & quite frankly become a new (more healthy) individual remain symptom free. I have seen examples of men who have got better though some TP work then went into remission because they did not continually work on keeping their muscles stretched out.

I have found my main motivation for getting better is successful stories & the period of time which some men have been symptom free (S-F).

I am only judging on my own evidence found here & assuming that men who stopped posting years ago after becoming S-F are generally still doing well as I'm sure David Wise himself is.

It would be great for me & I'm sure others to know how long some men have remained S-F for? I know the paradigm shift in treating chronic prostatitis / chronic pelvic pain syndrome has only been recent but it would still be very valuable. I have heard of may cases of 3-5 years S-F which is brilliant as far as I'm concerned! Anyone know of any other cases?

Greg

[webslave]

I've been well for about 10 years after being very sick for 3 and quite sick for 4. During those bad years I saw many doctors (spending over $20K), swallowed hundreds of antibiotics, had to abandon my career, and came close to the edge.

These days, 99.9% of the time I have no symptoms at all. I'm not sure about being completely "symptom-free" though. I've had occasional (a few days a year) mild burning urethra symptoms from too much tense computer work (online arguments on other forums, for instance) and one or two nasty flares (after starting to eat gluten again, 4/5 years ago).

On the other hand, my comorbid CFS, while much improved, has never completely faded, and if I over-exert by going on long hikes, for instance, I have mini-relapses with fatigue, joint and muscle pain that lasts a few days.

The only permanent changes I have made to my life are:

1) drastically lowered my ambient stress levels

2) take life less seriously

3) avoid wheat and all other forms of gluten

I did use limited internal self-massage (on levator ani) to get from 90% sick to 40% sick about 12 years ago. I suspect it may be a key component to getting well.

[benzo]

just to be clear: do you define symptom-free as really not having any symptoms or having symptoms but at a much more tolerable level?

[GP2]

That's great Mark really!

Do you personally think those men who suffer recurrent flares simply need to up their game somehow? I know its not easy & I'm certainly not condemning them. I know also as your own case testifies that setbacks are a natural part of the recovery process. Its interesting how this same process applies in recovery from nervous exhaustion / panic disorder (I can vouch for that) & perhaps in may other disorders / illnesses in the course of healing / rehabilitation.

[GP2]

Benzo - more the latter. People who expect no pain whatsover are just plain silly!

[benzo]

Benzo - more the latter. People who expect no pain whatsover are just plain silly!

OK, then I can definitely agree with what you're saying.
When things are OK I tend to slack off and not stick to doing stretches, or doing them only a few times/week after exercising.
Like I said I just had 7 months worth of feeling really OK, not pain free but good nonetheless and then this thing comes back to bite you in the ass again!

[GP2]

I wonder in actual fact if you have successfully kept chronic prostatitis / chronic pelvic pain syndrome at bay for 9 years & now its gone full blown (as it did for David Wise & Latte after two decades). This is testiment to your hard work. Maybe now you need to up your game a bit more thats all!

[webslave]

Do you personally think those men who suffer recurrent flares simply need to up their game somehow?

I don't know. It would be presumptuous of me to say that, because this can be a troublesome condition to manage, and the causes are very difficult to control. Anxiety and its various manifestations are notoriously resistant to treatment. Food intolerances, if you have them, can be tricky to uncover. Spinal nerve irritation may be involved, IBS may be involved, etc. Nerves and muscles in a disordered state through over-tensing take a long time to repair. It's complex.

[GP2]

I tend to agree. I guess managing the flares is perhaps more important.

[Richard.N]

Apart from the odd few hours (yes, hours) here and there (normally sorted by NSAIDs), I had been in a highly tolerable condition for about 2 and half years, which isn't bad going.

In that time, however, I did quit an extremely well paid but stressful job (which I think is a pretty serious step). The problem is that stress has a way of finding me. I re-started my career in higher education (which was a complete change in both occupation and culture), committed to only taking low stress roles, working 9-5 etc.

However, I now find myself in charge of stuff again! How did it happen? Well, I got too cocky and believed I was equal to the stress of a senior role just because I am vaguely competent. Unfortunately I am not competent in dealing with stress.

So I've kind of done this to myself

[save_me]

Thanks for your post GP2. Having a bit of a flare right now and needed some encouragement. Too much drinking on New Years.

Save!

[GP2]

Sorry Richard certainly wasn't implying that you didn't take serious steps to help your condition. I just was making the point I guess that for many of us it is difficult to treat the underlying cause without access to a competent PT / the SP.

I'm beginning to very sllowly accept that I cannot cope with a stressful career & may have to find fulfilment in other areas.

Its a shmae in a way but true for many of us I believe - we are not wired for high stress lives are we?

[GP2]

P.S - Keep us updated Richard. Maybe it (the flare) won't last as long as you fear!

[webslave]

Re: chronic prostatitis / chronic pelvic pain syndrome and the Festive Season -- I have noticed a distinct pickup in posting here after all the booze and sugary foods. Not a coincidence, I'm sure.

[Richard.N]

Sorry Richard certainly wasn't implying that you didn't take serious steps to help your condition.

Hey - no apology necessary and no implication was conveyed. Your thoughts did help me put into context just how much I achieved during my rehabilitation and how much support I got from this site.

Trial and error with different medications alone was a bit of an effort, looking back

I'm beginning to very slowly accept that I cannot cope with a stressful career & may have to find fulfillment in other areas.

It's a tricky one. I need a certain level of stress, I really do. What I found when I was trying to stick to less stressful jobs was that I was working as hard and being as obsessive as I would have been in a more responsible position. Striking a balance is key, but I'm not quite there yet. I'm starting to become ruthless with time-management though.

While I was in remission I also took up a hobby - Airsoft (Japanese version of paintball, but with plastic ball bearings instead of paint) - but I've had to cancel a game I was going to this weekend due to my current episode. I'm obsessive about that as well.

P.S - Keep us updated Richard. Maybe it (the flare) won't last as long as you fear!

Cheers - I hope it doesn't last much longer. As mentioned earlier, my flares have traditionally only really been glimpses at symptoms which have been knocked on the head, promptly, with NSAIDS.

I'm having a bit of fun with Urispas at the moment. I'm not sure if it's newly indicated for CPPS, but I'd not heard of it before. I suggested it to the doctor and she was only too happy to oblige. It's taken away most of the supra-pubic pain (which hints very strongly towards a muscular component), but it appears to have made me more frequent - like the relaxation has enhanced sensation in my bladder. Odd.