Hello, Strobers here

[webslave]

Agreed though that sometimes a uro is needed, at least in Canada. For example, I couldn't even get my family doc to prescribe Flexeril when I was having spasms. Had to make do with Elavil, which he loves to use for everything.

A good GP or family MD is essential, and one that is amenable to requests for medications too. If your local doctor is difficult to deal with and won't give medications at your suggestion, after you provide proof that the medication is used for UCPPS, move on to another doctor. Before long, you'll find one that wants to help.

As for why uros are wrong for us, from the horse's mouth
https://ucpps.men/urologists-profits-and-prostatitis-patients

[HelpADude]

My uro (one on only) said to me "You are completely 100% normal".. ok, doc, what do I do? "Just don't think about it"..

OKEE DOKEEY!

I'm getting more and more pissed off at traditional Western Medicine. If they can't match your condition to something in a book, that means you are healthy ...

Just today I read this exchange on another board:

http://www.fatwallet.com/forums/message ... #m11940291

This guy is a GP, I believe.

[webslave]

If they can't match your condition to something in a book, that means you are healthy ...

Unfortunately, that is completely true, which is why we need the researchers to codify this as a psychoneuromuscular condition and get that into the textbooks ASAP.

[Canbob]

I have two of the symptoms you describe: ear ringing and eye problems.

For me, the ringing started about 4 - 6 months into this ordeal. At first I thought it was as a result of the antibiotics, the benzos or something else I was taking. However, as of a couple of months ago I was relatively drug free (except for Flomax) and the ringing continued. It continues to this day. Some times less than others. It seems if I drink any alcohol it gets worse but I can't say absolutely this is the case. Some days it is barely noticeable.

I have also had problems with my eyes. I'm not sure if it is related to CPPS, but about 6 months after my onset my right eyelid started drooping. Occasionally, I also have problem with focus in that eye ... usually in the morning. The focus issue affect both my near and distance vision.

Can't say that OCD is a problem with me.

As with all my other symptoms, these two seem to wane when I am well rested and unstressed.

[elitynski]

Ok - this is freaking me out. I just started having a little issue with my eyes as well. About 7 months into all of this and I had trouble focusing with my eyes - the doctor called it Adult Strabismus.

However, I notice it more when I'm tired - maybe it's a result of perusing these boards more and reading and writing. I get a little double vision and have to close one of my eyes and kind of turn my head to bring things back into focus. It does seem to be more present when I'm tired - either early or later in the day is more common.

I think this is really strange that some of us are having some eye issues.

[webslave]

I have to report that when my chronic prostatitis / chronic pelvic pain syndrome was at its worst, around 1991, I had several episodes of double vision (diplopia), which seemed (to me) to be related to exposure to the chemicals from a nearby giant office photocopier machine. Never had it since, although I have had lasting issues with tinnitus (ototoxic antibiotics? too much hydrocodone?).

[neis]

People need to understand that urologists are primarily surgeons with little or no interest in treating psychoneuromuscular conditions.

So true. My Urologist happens to be the best guy I've ever met in the medical profession. First thing he said to me was, "I'm a surgeon and don't know much about your condition. I see guys like you now and then, but not often, and we generally refer you to the PT after AB treatment is tried, and other things are ruled out. We're trying to learn from the PT's and stay in communication with them". My GP has shown no interest in helping me, so it's my Urologist who is staying with me in an effort to find relief. I sent him an email about my perineal and anal nerve crawling, itching, and pain, and a day later he said he's going to get authorization to bypass the standard chronic pain program to try some nerve blocks at an outside clinic. His honesty is refreshing, and helpfulness appreciated, though atypical in his profession.

[Canbob]

I was reading Sarno's book, "Healing Back Pain, The Mind-Body Connection" last week. In the book he refers to Prostatitis, Frequent Urination, Dizziness, Ringing in the Ears and a list of other ailments as being equivilant to TMS (Tension Myositis Syndrome). I thought this was very interesting when I read it as I seem to have all four. No mention of eye problems though.

[strobers]

I have sciatica in my right buttock leg. Sometimes the sciatica is worse than the CPPS, and sometimes the other way around. But in your case, it sounds like you have a serious stress related issue. You should go see your doctor immediately and talk about the variety of anti-anxiety treatments that are available. We take Elavil at 10mg for pain, but that may not be strong enough for your anxiety condition. But you will never get the chronic prostatitis / chronic pelvic pain syndrome under control if you are severly stressed. This will only add to the discomfort of CPPS. There's a lot of non-medical things you can do to assist such as daily meditation, going for walks in the evening, listening to peaceful music, and so on. Basically, decrease the stress stimuli as much as possible. Drugs greatly speed this up, and can help a lot, but it's always best to not become dependent on them. But don't "tough it out". Go see your doc and get some treatment.

--mb

What's weird is that I don't really feel that stressed even though inside, way deep maybe at the cellular level, I'm going a mile a minute. That's the problem with really deep rooted stress. It's so deep that you can't feel it. I do so much to relax I could be the Poster Child for relaxation techniques and healthy living. I'm actually taking 25 mgs of Elavil, but not for anxiety; it's for the pain. I've been on other things; the gamut really Ativan, Xanax, klonopin, along with most of the SSRI's out there, but my anxiety tends to be situational. It's not a constant, chronic thing. It's ugly when it raises it's head, but 90% of the time I feel basically normal. That's why I'm not on any meds other than the Elavil. I listen to all kinds of relaxation CD's, have a very peaceful cacti garden where I go outside to relax, I play the guitar (I'm no Michael Shenker, but it's fun and relaxing to play) take long warm baths, cuddle with my wife, etc. Also, I've started tutoring kids after work. I'm working with a kindergartner and two 1st graders and am having a blast teaching them how to figure out sounds and read. It's something that really helps me focus on something other than my problems, which in turn fulfills me and relaxes me.

[strobers]

I was reading Sarno's book, "Healing Back Pain, The Mind-Body Connection" last week. In the book he refers to Prostatitis, Frequent Urination, Dizziness, Ringing in the Ears and a list of other ailments as being equivilant to TMS (Tension Myositis Syndrome). I thought this was very interesting when I read it as I seem to have all four. No mention of eye problems though.

I read Sarno's book, "The Divided Mind." He mentions all those things too. It's a great read. Supposedly some guy who had suffered 25 years of excruciating back pain read the book and cured himself just be reading the book. The whole premise of the book, in case you haven't read anything by Sarno, is that most chronic pain is emotional in nature and buried in the subconscious. In it's quest to stop people from releasing this repressed emotional pain, the subconscious creates pain in the body to distract the person from their buried, subconscious issue(s). It's an interesting concept and one that I resonate with a lot.

I grew up in an abusive home and there is no doubt in my mind that the repressed feelings I have buried waaaaaaay deep in my psyche intermingled with pain, resentment and the whole gamut of human emotions that are created in that kind of environment, is responsible for much of what has been happening to me this last year. The problem is that things are buried so deep that honestly, when I think of some of the most painful things I have endured, I don't feel emotional about them at all. I just have the memory.

I have a feeling that a lot of us here come from similar backgrounds; physically/emotionally abusive father/mother, being stifled, not allowed to become our own individual, being controlled in some way, rigid parent(s) having to live by the rules of orthodox religions etc. and after a lifetime of swallowing it, on top of all the added stress of just living life without losing your mind, finally just caused a major negative shift in our bodies.

It's too bad we aren't sponges. We could just soak ourselves in a big pail of water, squeeze out all the accumulated emotional junk that is clogging us up and keeping us sick, and be back to normal. Wouldn't that be sweet?

[strobers]

I'm going to start another thread regarding ear ringing and eye problems. I wonder if there is some kind of connection.

[strobers]

I posted something regarding some of the other medical problems that I started having after a few months of dealing with my CPPS. One of them in tinnitis and the other one is uveitis (inflammation of the eyes)

It seems that there are a few other guys who also have one or both of these symptoms.

If you have tinnitus and/or some kind of eye issue please post. I would like to see if there is some kind of correlation between chronic prostatitis / chronic pelvic pain syndrome and these problems.
If possible, give details. What exactly you have, onset, (before or after chronic prostatitis / chronic pelvic pain syndrome started) etc.

It will be interesting to see how many people have similar symptoms. I brought this up to all of the four clowns, oh I'm sorry I meant urologists, that I saw and none of them saw any connection. But what do you expect, right? However, based on the fact that before I got chronic prostatitis / chronic pelvic pain syndrome I was in perfect health except for some situational anxiety and GERD, leads me to speculate that either A. The stress from dealing with chronic prostatitis / chronic pelvic pain syndrome caused the problems B. Accumulate chronic stress affected the entire body in a major way.

[Canbob]

You know, I don't really feel much stress either but my wife certainly disagrees. I guess living in China creates tension in ways I don't even recognize. I'm certainly no expert on chronic prostatitis / chronic pelvic pain syndrome but have done a lot of reading. After a year of suffering, I have come to learn that physical improvement comes from knowledge and it's application. Strobers, it sounds like you are well on your way. You are definitely a lot further along than I was when I was less than a year into this thing. Hang in there! Things will get better!

[PagesOfTime]

A little while after it started, my right leg started twitching a lot for about a week. It really worried me, but then it just stopped. What a relief. I've had a few other odd things come up but none that really concerned me like that one did, and I can't really even think of them now...

[Canbob]

I definitely have had issues with ringing in the ears (tinnitus) and my problems with my eyes.

For me, the ringing started about 4 - 6 months after my chronic prostatitis / chronic pelvic pain syndrome onset. At first I thought it was as a result of the antibiotics, the benzos or something else I was taking. However, as of a couple of months ago I was relatively drug free (except for Flomax) and the ringing continued. It continues to this day. Some times less than others. It seems if I drink any alcohol it gets worse but I can't say absolutely this is the case. Some days it is barely noticeable.

I have also had problems with my eyes. I'm not sure if it is related to CPPS, but about 6 months after my onset my right eyelid started drooping. Occasionally, I also have problem with focus in that eye ... usually in the morning. The focus issue affect both my near and distance vision. I went to the eye doc in the USA and he said it was likely stress related. In retrospect, that is probably a better diagnosis than I received from my uro.