RSD and CPPS

[bti20]

I was just thinking: if, as Drs Dimitrakov and Nickel are currently investigating, it turns out that many cases of chronic prostatitis / chronic pelvic pain syndrome share much in common with RSD (reflex sympathetic dystrophy) then surely it would be the case that the headache in the pelvis-style myofascial release treatments favoured by many on this forum would actually be counterproductive. I've read that the general rule 'no pain no gain' for physiotherapy in RSD treatment is quite wrong and can actually be detrimental to the patient. I have actually had many sessions of aggressive myofascial release therapy, none of which produced any effect other than increased pain during and after the procedure; and I have very good reason to believe that my chronic prostatitis / chronic pelvic pain syndrome is actually some sort of RSD condition, which would explain the treatment failure. If a subset of chronic prostatitis / chronic pelvic pain syndrome cases do turn out to be examples pf RSD then will those of us in that group just have to wait for novel treatments (or remission ) to come along?

[rcalab]

what is reflex sympathetic dystrophy???

[MastCells]

what is reflex sympathetic dystrophy???

I did a search of this forum for you.

Read this.

[webslave]

I have actually had many sessions of aggressive myofascial release therapy, none of which produced any effect other than increased pain during and after the procedure

Are they using the proper technique? Write to David Wise and describe this "aggressive" therapy and see what comment he has.

Wise has said that initial exacerbation is common in his book. Have you read the book?

[bti20]

Well, the physiotherapist I have seen is actually in contact with David Wise himself. I also sent David Wise an email too and he didn't reply. And I've read the book twice. I think it neglects the possibility that muscle tension is not causitive but symptomatic; which is not a good thing to do to sufferers who are very depressed about chronic prostatitis / chronic pelvic pain syndrome and constantly bombarded with innuendo from the medical profession suggesting that it is somehow a psychosomatic condition.

[webslave]

I have asked DW to reply to this personally and he will in a day or two. In the meantime he does not know who you are and has not received any emails on this topic to which he did not reply. He also says there are <10 people in the USA who can do PFMTPR properly. He's drawing up a map of internal TP landmarks at this moment to assist PTs get it right. He also says aggressive therapy is never called for.

[MS]

...He [Dr. Wise] also says there are <10 people in the USA who can do PFMTPR properly. He's drawing up a map of internal TP landmarks at this moment to assist PTs get it right...

Mark,

Do you think Dr. Wise would be willing to submit the names of the PT's/Drs for our "therapists list?"

[webslave]

Yes, I think he may. I'm waiting for his email.

[webslave]

I received this response today from David Wise, PhD:

I was just thinking: if, as Drs Dimitrakov and Nickel are currently investigating, it turns out that many cases of chronic prostatitis / chronic pelvic pain syndrome share much in common with RSD (reflex sympathetic dystrophy) then surely it would be the case that the headache in the pelvis-style myofascial release treatments favoured by many on this forum would actually be counterproductive. I've read that the general rule 'no pain no gain' for physiotherapy in RSD treatment is quite wrong and can actually be detrimental to the patient. I have actually had many sessions of aggressive myofascial release therapy, none of which produced any effect other than increased pain during and after the procedure; and I have very good reason to believe that my chronic prostatitis / chronic pelvic pain syndrome is actually some sort of RSD condition, which would explain the treatment failure. If a subset of chronic prostatitis / chronic pelvic pain syndrome cases do turn out to be examples pf RSD then will those of us in that group just have to wait for novel treatments (or remission) to come along?

Attempts to make a case for pelvic pain as reflex sympathetic dystrophy are not new. While I am not an expert in RSD this is what I do know. It is generally agreed among clinicians and researchers that RSD is a condition that is complex, has features that are perplexing and poorly understood. It is characterized by regional pain, often in the hands or feet, autonomic, tissue and vasomotor changes, disorders of movement, muscle atrophy and almost always psychological and social disturbance. Part of the controversy about RSD is whether the psychosocial disturbances and suffering is causative or at the effect of other factors -- an issue of the chicken or the egg. The controversy about RSD reached a point where the name was changed to regional pain syndrome to eliminate the implication of agreement about the mechanism of the disorder. In a discussion I had with our senior physical therapist, in his experience RSD is an entirely different problem from one involving myofascial/trigger point pain. Your reader is correct that myofascial/trigger point release is not indicated with RSD although in some cases a patient originally diagnosed with RSD may simply have a hyper irritable myofascial pain syndrome and the diagnosis of RSD may have been incorrect.

Diagnostic criteria have been proposed for RSD by an international organization but these criteria are not universally accepted. Bottom line here is that this is a poorly understood and controversial condition that has no effective treatment.

RSD, as a general rule does not respond to myofascial trigger point release therapy. Furthermore muscle atrophy, edema or swelling or disorders of movement are not prominent features in the pelvic pain we treat. What is telling for me is the fact that many patients with pelvic pain have responded favorably to our protocol whose physical therapy component involves myofascial trigger point release where RSD does not respond to this methodology. All of this makes the RSD/CPPS hypothesis dubious.

So pelvic pain as RSD is a speculation with little supporting evidence ... a speculation that is no different from the speculation that pelvic pain is the result of an occult bacteria or is an autoimmune disease. At this point this idea offers no course of treatment or action that helps or protects someone, it offers no definitive evidence and importantly it tends to promote fear and helplessness in many who suffer from pelvic pain. I take the view that pelvic pain as RSD is an idea with little foundation that I choose to ignore until there is some compelling reason to entertain it.

In our book we address a very important issue related to the question I am discussing here. This is the question of what to do with speculative theories about pelvic pain like the one that it may be related to RSD -- theories that offer no treatment and serve to scare the reader. I quote our book below:

"We are often asked about other theories regarding the nature of chronic pelvic pain from people suffering with pelvic pain, a subject we touched upon earlier. Many of these individuals are already in an anxiety state and are looking for some kind of reassurance or guidance as to the nature of their condition and the best course of treatment. When they go on the internet, they read about various theories contending that chronic pelvic pain may be an auto-immune disorder, a condition in which occult bacteria are yet to be discovered, or a deteriorating neurological pelvic condition.

These theories do what we have described earlier. They tend to promote fear and helplessness in the sufferer.

When you have pelvic pain, it is deeply disturbing to read theories which promote fear, helplessness, and confusion or hear stories of people who are not doing well with their pain or dysfunction. When you have pain and dysfunction, you usually feel some degree of anxiety and helplessness which is often exacerbated by these kinds of theories. Some of our patients have asked us whether they should ignore the ideas that they read on the web or simply avoid the internet websites devoted to pelvic pain. Others have asked us if there is some way to find out if in fact they have the problem that these theories purport.

If a theory or an idea about your condition carries some course of action or treatment to help you without unacceptable risks, then it may be an idea that merits your careful consideration. You may wish to investigate the efficacy of such a course of treatment along with the risks and costs.

If the theory, on the other hands, carries with it (a) no course of treatment or action to be done to help or protect you, or if its treatment carries dangers you are not willing to risk, or (b) it offers some non-definitive evidence, and (c) it only helps to create fear, doubt, and disempowerment in your life, we suggest you tell yourself the following: "This is someone's theory. There is no definitive proof for it. It offers nothing to help me or protect me. What it offers carries unacceptable risks. It creates fear and doubt in me. It is okay for me to disregard it as somebody's unproven idea which I will consider if there emerges substantial evidence and/or something to do about it. Therefore I can ignore it as simply someone's unproven idea. This kind of self-talk "¦ is particularly important because anxiety tends to increase symptoms."

The person who wrote to you about RSD is obviously distressed that his symptoms did not improve with myofascial trigger point release that was aggressive, and he was looking for some other answer to his difficulties. In my response to the description of his treatment, let me say that we do not advocate aggressive physical therapy in our protocol but a very specific method aimed at locating and deactivating trigger points inside and outside of the pelvic floor that tend to recreate symptoms as well as methods that systematically stretch the shortened and contracted pelvic tissue. It is common that the in beginning stages of treatment, temporary flare-ups occur. It is the normal course that the discomfort diminishes over time during and after physical therapy. If it doesn't, in my experience, the problem is often that the physical therapist is missing something.

In my view the whole issue we are dealing with about treatment for pelvic pain is simply this--how to allow the body to heal itself? I think contemporary medicine tends to forget that it is almost always the case that "˜the body heals itself and the doctor collects the fee.' In the National Library of Medicine today, I found there were 3743 research articles listed on prostatitis. An infinitesimal 7 articles even contained the word healing. My view about treatment for pelvic pain is that we want to optimize the circumstances for the body to heal itself, we want to get out of the way of the healing of the tissues, muscles and structures inside the pelvic floor. Healing is what we want. In my own case, when I began thinking this way, my condition began to resolve.

The Stanford/Wise-Anderson Protocol is about healing. It is about creating a hospitable environment for the restoration of normal happy tissue inside the pelvic floor. The relaxation protocol allows the nervous system to quiet down so that the irritated tissues can heal and can stop being squeezed into an irritated state"¦ a squeezing that in most people who have pelvic pain has become habitual and chronic. The relaxation protocol aims to change the habit of tightening the pelvic muscles under stress. The physical therapy we do stretches and lengthens the pelvic tissue and deactivates trigger points to make room for a healthy life in the pelvic floor.

The idea of RSD as it is understood today, at least as I read it, implies a condition where healing is remote. I balk at theories that imply healing isn't possible because of my personal experience and others who have gotten better with this problem. Healing is possible. The patients I have seen who have done the worst -- especially those who have suffered from unwise medical interventions, have given the entire responsibility for curing their condition to someone or something outside them. They come to the doctor and say "fix me doc". Any treatment for the kind of pelvic pain we treat needs to be the servant of the body's healing mechanisms. This requires the intimate and whole hearted participation of the patient.

Physical therapy alone, while an essential component, is usually inadequate to resolve symptoms because it alone cannot make this healing occur. I understand this experientially. It is tempting for someone to think that physical therapy, this outside procedure, will fix them. In my experience this person will be disappointed as I was. I had over 50 physical therapy treatments and at the end of them all, I was still symptomatic and in pain. It was only after I saw that my problem came from my chronic tension, anxiety and habitually squeezing my pelvis -- and particularly when I began the relaxation protocol in earnest, often up to 2 hours a day for over two years and doing moment-to-moment pelvic relaxation throughout the day, that my symptoms began to resolve. The pelvic pain of those we help is not simply a mechanistic problem that can be fixed from the outside with a physical therapist's finger. The habit of tightening the pelvic floor is usually decades old and has been practiced thousands of times. It is part of a coping repertoire. Tightening their pelvic floor under stress is the default mode and keeps the tissue of the pelvic floor irritated and shortened.

Consider that there are 168 hours in a week. Let us say that a person goes to see the physical therapist 2 times a week. That quite a bit of physical therapy. In the physical therapy session, after a person takes off their clothes, gives the PT a report on their week and begins the physical therapy itself, at the most there is probably 30-45 minutes of hands-on treatment. After the treatment, the tissue is lengthened (although sometimes temporarily irritated in the process). That is between 1 hour and 1 ½ hours of therapeutic treatment per week. In a good pelvic floor physical therapy session, the pelvic floor tissue has been lengthened and life has been made more livable for it. But after physical therapy, there are 167-166 ½ hours per week to live. The old habit of going 100 miles an hour in one's life and tightening up the pelvis regularly and squeezing and shortening the irritated tissue can easily and quickly undo the therapeutic impact of the physical therapy session. It makes no sense to think that a physical treatment that lasts less that .023% of your life can work if the old, symptom provoking habits go on unabated. In my view the resolution of the kind of pelvic pain we treat is an inside job of cooperating with the healing mechanism of the body in the short run and the long run.

We have received hundreds of emails from people telling us that our theory described in "A Headache in the Pelvis" is the first one that makes sense to them. While I appreciate these comments, I am unmoved by them. I am moved when someone's symptoms improve or go away. I am moved when the body responds to treatment with a big "˜yes'. Theories are cheap and yet to the lay person, they can sound convincing and formidable. In my view a theory about pelvic pain is only as good as the efficacy of the treatment that it informs and serves the healing of the body. In other words, the most important issue is results -- ie. does the method that derives from the theory help the body's healing thereby reducing or resolving symptoms? We do not help everyone who comes to see us. But if they do fit into a certain profile, they must do the entire protocol properly before making a judgment about its efficacy. They must participate and support their own healing. Results are what counts. Results mean that the patient has helped rally his or her body in healing itself.

Sincerely,

David Wise, Ph.D.

[bti20]

I had over 50 physical therapy treatments and at the end of them all, I was still symptomatic and in pain. It was only after I saw that my problem came from my chronic tension, anxiety and habitually squeezing my pelvis -- and particularly when I began the relaxation protocol in earnest, often up to 2 hours a day for over two years and doing moment-to-moment pelvic relaxation throughout the day, that my symptoms began to resolve.

Please pass on my thanks to Dr Wise, Webmaster, for a very interesting reply. I think the quotes above raise an important point: What does it mean for a person to really 'see' that his pelvic pain stems from tension and anxiety? Dr Wise says that his protocol works for a patient with a certain profile; I assume that this is the patient who accepts that his pain stems from chronic tensing and resolves to kick the habit during the course of treatment.

Well, reading Dr Wise's book was something of an epiphany for me, sympathetically and passionately written as it is, and I remember imediately believing that my pelvic pain was a result of the mechanisms it describes. So I went to a knowledgable myofascial release physiotherapist and underwent the treatment, combing it with the relaxation, yet my new found optimism was soon hampered by a different conviction: that my pain felt as if it was being transmitted down channels that remanined totally unaffected by the pelvic floor release, the stretches, and most of all, the relaxation.

Of course, these negative impressions are just the thing to stop you from healing properly - if you fit the correct profile - and I remember re-reading sections of Dr Wise's book and resolving to get the negative thoughts out of my head in order to focus on the possibility of healing. But still I couldn't shake off the impression that there was something real but insidious that was totally out of my conscious or even unconscious control which was causing my pelvic pain. Even NOW, as I am writing this, I am thinking to myself *hold on, by doubting Wise's tension hypothesis you could be squandering your ONLY chance of recovery*.

The question that needs to be answered is: is there an identifiable point at which failure of Wise's protocol demonstrates not that a patient is failing to 'believe' in it hard enough, but that there really is something going on in a patient's pelvis that all the relaxing and stretching in the world won't address? I know that Webslave has expressed scepticism about, for instance, pudendal nerve entrapment as a potential cause of CPPS, but that doesn't mean that it is impossible (or even implausible) that there IS a syndrome which is similar to carpal tunnel syndrome and which is responsible for a subset of chronic pelvic pain patients. Nobody wants to suggest that those carpal tunnel sufferers who have had their lives dramatically improved by successful disentrapment surgery could have bypassed surgery by believing a bit harder in the idea that tense wrists were causing their symptoms.

The central message of AHIP is obviously a partisan one: that a cure can be found for chronic prostatitis / chronic pelvic pain syndrome by abandoning the idea that anything really causes it other than sufferers' anxiety; and I am not saying for a moment that this isn't true in many cases. But this forum should be alive to the (at least) the possibility that stretching and relaxing may fail to erradicate pelvic pain in some for reasons other than that a sufferer's lack of convinction towards the tension theory. I used PNE as an example, but there could be other factors involved in CPPS, both factors that are treatable now (stricture?), or untreatable now (autoimmune disorder/venous disorder/nerve damage) which are contributing.

Again, as I write this I am thinking *that's just the sort of negativity which will land you with chronic prostatitis / chronic pelvic pain syndrome indefinitely*. Even worse, I actually feel quite GUILTY writing this because I know (well, I know on the strength of this website) that many people have recovered from chronic prostatitis / chronic pelvic pain syndrome thanks to the Stanford/Wise-Anderson Protocol; and so by writing this I could be jeopordising the recovery of others by putting negative thoughts into their heads. But there has to be a point where attributing chronic prostatitis / chronic pelvic pain syndrome to your own failure to believe in anxiety theories becomes even more damaging than the pessism of accepting that there may be something out of your control at the root of the symptoms.

In actual fact, I am going to try the Stanford/Wise-Anderson Protocol from scratch, all over again. I think its worth a go - a long go, although Dr Wise doesn't specifiy how early in the course of two years he had any positive feedback from the treatment other than just continually believeing that it would work. I think if I have to wait two years constantly thinking "stick at it - it will happen in the end", I would say the treatemtn is not working.

[webslave]

I don't think pelvic myoneuropathy explains 100% of the cases of pelvic pain. For instance, the one thing that I can do to bring back a degree of pelvic pain to my asymptomatic pelvis is eat gluten (wheat, oats, barley). That has nothing to do with anxiety or muscle tension.

[latte]

As much as we have discussed this topic I am still confused. Personally I have been diagnosed with an IC-like process in my prostate. This may have been precipitated by muscle tension and anxiety, that is quite possible. When I meditate and take a hot bath I feel better but the burning of the cytokines in my prostate never really goes away. I am skeptical that the Stanford method can reverse the IC-like process in my prostate. I find it also rather discouraging that one can go through a lot of effort with the Stanford method for up to two years with no results. Ultram takes away the pain for me but the process that started almost three years ago is still ongoing in my prostate. Does anyone on the forum think that relaxation/PT can stop the cytokine cascade over time. What do you guys think? As I write this I guess I have come a long way just to be able to ask this question. By the way, my symptoms do not seem at all tied into what I eat or drink.

[webslave]

Don't be too sure about foods not having a role. In my case, I had to stop gluten for months before it had a major effect on my pelvic symptoms, and conversely I have to eat wheat for about 10 days before I feel symptoms starting up again. So unfortunately the link to foods, if you have this problem, is not intuitive or easy to spot.

This does not mean that the proliferation of mast cells in the bladder/prostate area in my body was caused by my gluten intolerance, just that the intolerance is the one thing that can make those mast cells react. What put all those mast cells there is another issue (?pelvic myoneuropathy).

This is a very subtle and difficult disease to understand, which is why you have to try so many things to combat it successfully.

[hodologica]

[edit: 10may04. No strong flares for 5 weeks. At the time of this downcast statement I was having them every week or 2, and they'd last 2-5 days.]

bti20,
I think I can somewhat understand how you feel. In January I was excited to discover that each time I crossed into the meditative state I could feel a very large collection of PF and rectal-area muscles suddenly become able to relax (they would even retain the tendency to re-contract until I had been in the state for 10-20 minutes). Till recently my excitement continued, since during 4 months of twice-daily meditation - combined with stress-reduction and many other avenues of chronic prostatitis / chronic pelvic pain syndrome treatment - I have seen an extensive diminution of this phenomenon. It is presently ~10% of what it initially was, and has now been below 20% for a month. The effect, so far, on my pain: zero. I understand how it may take many months for nerves and other tissues to heal, but I have *not* felt overwhelmingly sanguine this month. For now I can only press on, hoping that the addition of PT (evaluation next week) will obtain *some* results within several weeks, and thus encourage me to endure more months somewhat happily. Otherwise I'm going to need antidepressants. Actually I'm rather ready for them now, but I want to be able to see clearly whether PT is going to have an effect, so I'm not willing to change anything at this moment.

[alprost]

For now I can only press on, hoping that the addition of PT (evaluation next week) will obtain *some* results within several weeks, and thus encourage me to endure more months somewhat happily. Otherwise I'm going to need antidepressants.

It's great that you've been practicing relaxation, but if you have a pelvic floor which is full of trigger points and is inflamed, this, on it's own, is unlikely to produce any lasting improvement in your symptoms. The PT is absolutely essential in my opinion. I'd also stick with the relaxation exercises.