Fibro link? and progressive? your thoughts...

[gmccormack]

I saw my Pain Management specialist yesterday, I scheduled an hour.

What are you thoughts about CPPS being progressive? Seems most on this board have stayed at initial pain or have gotten slightly or significantly better over time.

Dr. Wise had told me that his, after 20 years seemed to be getting worse. O'leary said in 1999 in a paper that his patients with varying symptom severity get better over time with at the least very slight improvements. Is there any data you guys have read this is progressive?

I brought up the 3 studies recently on pubmed that try to link CPPS to Fibro and the PM Dr said like IBS too these are functional pain condition so they are likely related, how closely its tough to say ...not what I wanted to hear.

I also asked about benzo's causing allodynia, the focus of research these days is that GABA receptors plays a major role, what role no one really knows.

There is a push going on now he said to TRIP (translate research into practice). Hopefully in the next decade we may have a truly novel drug that works for a majority of patients with chronic neuropathic pain assuming the PT and other possibly safer techniques work.

[webslave]

My thoughts are that this is not usually a progressive syndrome in all but the most resistant cases. I have seen most members recover and move on from this forum, and continue with their lives. They sometimes write to me years later with updates, and often report no pain or just occasional, very mild pain.

I think waiting for a drug to fix this is not the right approach, and unlikely to occur. I may be wrong, and I hope I am wrong.

Functional pain syndromes are best treated with multicomponent medical and behavioral strategies that are individualized to patient needs. This is the approach I recommend here, and that worked for me (phytopharmaceuticals, massage, diet, behavioural changes etc).

The key is to wind back the central sensitization and hyperalgesia (a long term project in the worst cases, but worth the effort).

[coldsteel]

"Dr. Wise had told me that his, after 20 years seemed to be getting worse"

Dr. Wises symptoms are getting worse? Is that true?

[gmccormack]

Coldsteel: You misunderstood. Wise told me before he discovered a way to resolve his problem his symptoms were progressive.

Webslave: I get what you're saying. My pain is so much lower than it was 4 years ago, sure, but there is very little more I can do other than be patient and continue practicing things that are conducive to getting better. It is still restrictive and I would label PT and meditation as moderately helpful. Maybe its user error, but personally I think there is something more to it.

My pain has changed so much over the 4 years.I no longer have sore muscles, its completely nerve pain (ie allodynia, paresthesia). I don't even have ejaculation pain anymore "the hallmark." I think I remember a post you had written a long time ago mentioning that it took years for your allodynia to resolve. My half hearted goal is to find something that relieves this type of pain. If this truly is related to fibro or another form, its not comforting

In my worthless opinion I think there will be a medication in the next decade that will significantly ease CPPS or more broadly chronic neuropathic pain while the patient unwinds physical and mental problems.