Gmccormack's case

[gmccormack]

I agree with the potential of mast cell issues, however my life is very tough, I need something that can give me that kind of blast relief. It's only at 10mg and my physician said at that dosage I would "Not likely" experience those issues, no doubt it CAN happen.

Thanks for the input.

[sediment6]

Concerning Elavil:
I've been taking Elavil 25mg every night for the last month or so. Its basically like aloe for sunburn, it doesn't make the burn go away by any means, but it soothes those fiery nerves. Its good stuff and I recommend it. It also incidentally helps with anxiety at night-time which is generally a problem for me. I find that as the day wears on the burning/aching/anxiety/negative thoughts get worse and by the time it gets to where I need to go to sleep it is often difficult to do so. Thats where the Elavil helps me. I will say that for me, it really put me on my ass the first few days of taking it. I remember I went to my aunt's house to talk with my cousins while she was in the hospital and it was the second or third day I had been taking Elavil. Man I ate a shitload of cheez-its and slept on the couch in the living room for four hours during the middle of the day! later that week as I got accustomed to taking Elavil the sleepiness went away completely.

Another thing:
I notice that you said you were a power lifter for 10 years? There's a guy on here that believes that there is a strong correlation (if not outright causation) from heavy exercise histories. I myself have been weightlifting for an hour and a half three times a week for 4 months right before I developed this condition. I also did squats with my toes pointed out and my feet spaced far apart which I am told is horrible form and may have contributed to where I am today according to my PT. After all, I've been told that some of the pelvic floor muscles are responsible for orienting the leg, that is the twisting of the femur clockwise or counter-clockwise. <---that may be incorrect physiologically speaking so don't take it as truth, I just think I heard that from my PT once.

In the words of president bush concerning the world trade center, this condition is nothing less than "turrible sadness".

God bless ya. I wish all the best to you,

~sediment6

[CMT23]

Just a quick comment: I have noticed that those who start using opioids on a permanent basis do not seem to be able to get better. I'm not sure why that is. I have a theory ( viewtopic.php?f=9&t=3698 ) but it's only a theory.

Just wondering if you still are a proponent of this theory. Also hasn't it been said many times that if you can end the cycle of pain anxiety and more pain that you can give your body a chance to get out of this loop? With that in mind, couldn't Oxycontin used temporarily be very useful for someone who has been doing the AHIP protocol for over a year, but still has symptoms?

[webslave]

I'm a big supporter of the temporary use of opioids. But as soon as you start using them for weeks and months, the outlook bleakens. That's my experience with quite a few sufferers, who eventually went downhill on them.

[gmccormack]

Just signed on in I think over a year. I'd like to give some positive news, might not help all of you but I have been on this board through the worst of times and reading something positive always eased some pain. I even had success stories on my wall a few years back.

My pain has gone from debilitating and at many times came close to end of my rope to now very much manageable and close to normal.

For about 9 months now I have been around a 0-2 in pain level. I had it all and when I went to Wise-Anderson Protocol, Wise said I was no doubt a very severe case as I cried to him during the 1 on 1 session. I have come a long way.

I researched chronic prostatitis / chronic pelvic pain syndrome and the genitourinary system in depth albeit with a rather primitive level of true understanding, I used to think it eased my pain thinking I was doing something. I participated in a number of trials and called/emailed researchers and was involved in the "community" for 2 years.

I think that with time and other things the symptoms can draw down over time, although that study think it was Amy Brenner et al I think is BS. I emailed her and the theory was that if a patient left the urologist it meant they were healed. If that was the case I would have been cured 8 times.

Anyways, last January was around when things started getting much better and the below are things that I found helpful

1. Stand up desk at work
2. Stretch and Sauna in the AM and during lunch
3. PT and stretching in the PM (1 day a week professional PT)
4. Take Phenibut and Klonopin when I sense discomfort arising
5. Limit core activity - shoveling, raking, crunches
6. I do lift weight now very light, lost about 30 pounds due to lack of weight lifting and something I've accepted
7. I was but no longer am using Oxycontin, I think it did help but unless you know your chronic prostatitis / chronic pelvic pain syndrome is going to only last 3 months I would suggest not, it loses its effectiveness and continued use has its side effects and I'm not talking about addiction.
8. Find something to lose yourself in, and its probably not TV. I enjoy woodworking and really increased my time doing that and studying for a work related exam.
9. Understand that if today the pain goes up, it will go back down to at least where it was, maybe not for a week but it will losing sight of that got me in trouble so many times.
10. O'leary gave me Rapaflo and I understand the studies on alpha blockers are not successful but this has seemed to really help me, it doesn't make me dizzy like Uroxatral or Flomax. Is it a game changer no, but no doubt it made urination much smoother especially when things were worse and it still does to an extent.

I wish you all the best, please try to respond when you get better I think it eases sufferers mind and gives us all hope.

[gmccormack]

I can't believe I am on here posting again, I went through hell with this and finally beat it back 95%.

After 1.5 years of having almost no symptoms in late May I got it back and it is full force right now. I have continued to do PT and meditate since very early on about 4 years ago.

Please can I hear from some old timers who so graciously still help out? Do you think I'm back to where I was 4 years ago? I feel like its the same burning pain that is so difficult to get rid of. I've read a few postings on a few guys getting 3 week - 3 mo flares every so often after initial onset went away.

It came on when I strained myself putting in a fence....

I know Wise would tell me I'm not back to square 1 but wanted to hear from you guys. Trying to stay positive

[webslave]

The first few years of recovery can often be marked by relapses. Happened once or twice to me too. With time, the recovery becomes more durable. Just identify why this has happened, eliminate the trigger, and go back to doing what helped you last time. You'll get better again, I promise.

[gmccormack]

Thanks Web, just hearing others had this happen too brings some mental relief. I'll let everyone know how it goes.

Sorry for not linking to my old post threads.

After all these years you are still a beast man, I don't envy you but have a ton of respect for what you do.

[davioj]

Same here, seems to come and go these days. Just the nature of the beast I suppose. Relax, dont panic and you will get back to where you were soon. Keep us posted and good luck.

[gmccormack]

I'd like to report that after 6 years I am consistently pain free. It was a 5 year battle where I almost lost everything at one point.

I'd like to point out something that helped me really take the final step toward consistent pain relief.
I stopped drinking diet sodas, and other diet products. I read an article in the New Yorker about 9 months ago about a woman who said that ingesting artificial sweeteners like Splenda etc always had a significant negative effect on her fibromyalgia. I probably drank about 4-6 diet drinks per day, its not that I'm overweight just always wanted to limit calorie intake. Within 2 weeks my pain dropped from a consistent, nagging, burning 3 where it would affect most daily activities but had learned to live with the pain to a 0. I can actually sit for an entire 9 hour day with no pain. That thought was completely ridiculous, 10 months ago. I even skied pretty heavily at the end of last winter, something I hadn't done at all since 2007. I am a lot weaker which is understandable.

It is rather ironic, I used to laugh at those (including Web - sorry) that said diet played a role in this condition. I never tried altering my diet, it was just too eastern medicine for me. However, something in the article got to me and I said to myself it wouldn't be so difficult. At first the skeptic in me thought it was a placebo, but its clear its not. It was like night and day. In fact, I experimented and drank a large diet coke about 2 months after discovering this and sure enough the pain ramped up, not to the extent it was before but it was clear. It took me 3 days to bring it reel it back in.

I also have wondered if Phenylalanine ( http://en.wikipedia.org/wiki/Phenylalanine) which is found in almost all diet drinks is also contributory, it crosses the blood brain barrier which is a big deal in general.

I'm now trying to get my career back on track which is another story but so much less frustrating than it should be because in the depths of this condition I would've given anything and everything including my life to rid this pain. It was that bad, yes.

I wish you all the best and to always continue to try new things. What do you have to lose but time and a few bucks.

Thanks to those who helped me on here. Webslave, Sleeper, Lightning Tree
As a side note I went to San Fran to the WA clinic in 2009.

[Caedar]

That's fantastic, man! Great to hear it. :)

[webslave]

Good show there, GMc! Yes, diet can play a pivotal role (a point of disagreement between me and Dr Wise, BTW). I still drink diet sodas without any effect, but I don't drink Splenda, which disagrees with me. I find the most innocuous sweetener is Saccharine. Phenylalanine (found in Nutrasweet aka aspartame) can make you very sick if you have a disease called Phenylketonuria (rare). More likely you are reacting to the preservative (sodium BENZOATE), which has been mentioned by a few people here as a trigger, including for me when I had symptoms.

[gmccormack]

Thanks C and Web. Good point about the sodium benzoate, it's an experiment I don't want to bother with. You're doing Gods work here.

[Sleeper Service]

Great news! I'm tempted to cut out diet soda too. Coffee doesn't seem to bother me, but diet soda - and, strangely, Pepsi rather than Coke, seems to.

Glad things have resolved for you!