This article relates to chronic pelvic pain in women, but the principles are not difficult to apply to men:
http://www.pelvicpain.org/pdf/ICPS_cpp_as_crps.pdf
CPPS a form of Complex Regional Pain Syndrome (CRPS)?
-
webslave
- Maintenance
- Posts: 11432
- Joined: Wed Oct 30, 2002 3:18 pm
- Location: Please give your location so we can help better
CPPS a form of Complex Regional Pain Syndrome (CRPS)?
Good News! The great ProstaQ is BACK at last! You must try it.
| HAS THIS SITE HELPED YOU? Say Thanks by donating. Keep the Forum alive on the Internet! PayPal link at end of page ↓ Contact me at support at ucpps.men |  |
-
Ralph
- Veteran
- Posts: 180
- Joined: Sun Dec 29, 2002 5:13 am
This supports my hypothesis that chronic prostatitis / chronic pelvic pain syndrome is really a form of RSD as I have posted previously. Now I guess I can't call it "my theory" anymore.
I started taking Neurontin two weeks ago during a terrible flare up. Today I am completely symptom free. Go figure. I can't remember when I last felt this good. I did drift off my diet weeks back and I think that's what triggered things. A little spicy food, a little ETOH, too much fat and I went down hill fast. Once the pain cycle starts, it's hard to break. I was miserable for two full weeks. If I would have died in my sleep, that would have suited my just fine. Neurontin seems to have worked very well. Lets see if it holds. I flared up while on Elmiron which was a disappointment.
The pain cycle, once it starts is a complex mechanism. There are elements of bladder spasm, urinary retention and pelvc floor tension. Back pain is very common during these episodes as is pain radiating down the legs. This has a radicular and neurologic distrbution. Similar to some patients that have herniated lumder discs. The pain and discomfort greatly exceeds the insult. I'm sticking to my current thinking that this is mainly a neurogenic pain syndrome initiated by some previous event. It could have been an infection or trauma or some other insult. I think this puts a person in a "hypersensitive state" in which a minor event triggers the pain cycle. Just my personal theory. Don't take it as gospel. There are no scientific studies published in peer review journals, as far as I know, that support this theory. Webmaster, you are very well read, correct me if I'm wrong.
I started taking Neurontin two weeks ago during a terrible flare up. Today I am completely symptom free. Go figure. I can't remember when I last felt this good. I did drift off my diet weeks back and I think that's what triggered things. A little spicy food, a little ETOH, too much fat and I went down hill fast. Once the pain cycle starts, it's hard to break. I was miserable for two full weeks. If I would have died in my sleep, that would have suited my just fine. Neurontin seems to have worked very well. Lets see if it holds. I flared up while on Elmiron which was a disappointment.
The pain cycle, once it starts is a complex mechanism. There are elements of bladder spasm, urinary retention and pelvc floor tension. Back pain is very common during these episodes as is pain radiating down the legs. This has a radicular and neurologic distrbution. Similar to some patients that have herniated lumder discs. The pain and discomfort greatly exceeds the insult. I'm sticking to my current thinking that this is mainly a neurogenic pain syndrome initiated by some previous event. It could have been an infection or trauma or some other insult. I think this puts a person in a "hypersensitive state" in which a minor event triggers the pain cycle. Just my personal theory. Don't take it as gospel. There are no scientific studies published in peer review journals, as far as I know, that support this theory. Webmaster, you are very well read, correct me if I'm wrong.
Ralph Caccese, MD (Radiologist)
-
webslave
- Maintenance
- Posts: 11432
- Joined: Wed Oct 30, 2002 3:18 pm
- Location: Please give your location so we can help better
There are a few studies, like this one. Not sure if it describes exactly what you are saying, but your theory is almost identical to the Berger theory. See the Berger hypothesis here:
You do not have the required permissions to view the files attached to this post.
Good News! The great ProstaQ is BACK at last! You must try it.
| HAS THIS SITE HELPED YOU? Say Thanks by donating. Keep the Forum alive on the Internet! PayPal link at end of page ↓ Contact me at support at ucpps.men | |
-
Erik
Hi Ralph,
Interesting stuff. Especially your description of "leg pain", as I have been hit pretty hard with this symptom recently. Coincidentally or not, I recently started any accredited quercetin product and have seen my symptoms get worse at times (like the leg pain, which is a symptom I haven't had since I first experienced CP a few years ago). My doc and I are going to start treating me by taking the "neurological" path. So, I will be starting shortly Neorontin, Elmiron, and Doxepin (sp?). Anyway, interesting thoughts/theories you two are discussing here and I must admit I am starting to realize this is a neorological condition, and that (at least for me) there is a very close parallel to IC....
Erik
Interesting stuff. Especially your description of "leg pain", as I have been hit pretty hard with this symptom recently. Coincidentally or not, I recently started any accredited quercetin product and have seen my symptoms get worse at times (like the leg pain, which is a symptom I haven't had since I first experienced CP a few years ago). My doc and I are going to start treating me by taking the "neurological" path. So, I will be starting shortly Neorontin, Elmiron, and Doxepin (sp?). Anyway, interesting thoughts/theories you two are discussing here and I must admit I am starting to realize this is a neorological condition, and that (at least for me) there is a very close parallel to IC....
Erik
Last edited by Erik on Tue Feb 04, 2003 3:22 pm, edited 1 time in total.
-
latte
- Senior Veteran
- Posts: 266
- Joined: Wed Oct 30, 2002 4:54 pm
- Location: San Diego, CA
neurontin
Ralph,
I have been taking 1500mg of neurontin per day with some relief but not dramatic. How much are you taking per day?
I have been taking 1500mg of neurontin per day with some relief but not dramatic. How much are you taking per day?
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
-
Clark
HiErik wrote:Plus, it was suggested that I stop any accredited quercetin product and switch to Algonot Plus, as it may be more suitable for me (esp. with my recent "leg" symptoms et al).
Interesting indeed... if you don't mind answering, Erik - who recommended you change to Alogonot and why would it be better than any accredited quercetin product for these type of symptoms ?
cheers
Clark
-
Ralph
- Veteran
- Posts: 180
- Joined: Sun Dec 29, 2002 5:13 am
Latte,
I'm on a low dose of 600mg per day (300 twice). Keep in mind I have been on Elmiron for over 6 months. The two may have a "synergistic" affect. I can tell you for the last few days I have been 100% normal which hasn't occurred for over a year. I stopped the Elmiron a few days ago to see what happens. I am not suggesting that chronic prostatitis / chronic pelvic pain syndrome is a neurologic disorder for everyone, it just seems to mimic symptoms of neuralgia in me. I see similar symptoms in patients that have other documented neurologic disorders such as, I'm afraid to say, multiple sclerosis. This is a disease which typically waxes and wanes with symptoms. It also affects people differently and to different degrees of severity. I think chronic pelvic pain can be caused by many things, but the pain cycle I experience seems to involve a neurologic distribution. Pain down the legs is not an uncommon feeling in many people with CPPS. Neurontin and other newer agents have a role in chronic pain management. Be sure to ask your doctors about managing chronic pain from a neurologic view point. You may stumble across the right combination for yourself. Long term narcotic use is something that should be avoided. This, in my opinion, is not a good option for chroinic pain management but may be required on a short term basis.
I'm on a low dose of 600mg per day (300 twice). Keep in mind I have been on Elmiron for over 6 months. The two may have a "synergistic" affect. I can tell you for the last few days I have been 100% normal which hasn't occurred for over a year. I stopped the Elmiron a few days ago to see what happens. I am not suggesting that chronic prostatitis / chronic pelvic pain syndrome is a neurologic disorder for everyone, it just seems to mimic symptoms of neuralgia in me. I see similar symptoms in patients that have other documented neurologic disorders such as, I'm afraid to say, multiple sclerosis. This is a disease which typically waxes and wanes with symptoms. It also affects people differently and to different degrees of severity. I think chronic pelvic pain can be caused by many things, but the pain cycle I experience seems to involve a neurologic distribution. Pain down the legs is not an uncommon feeling in many people with CPPS. Neurontin and other newer agents have a role in chronic pain management. Be sure to ask your doctors about managing chronic pain from a neurologic view point. You may stumble across the right combination for yourself. Long term narcotic use is something that should be avoided. This, in my opinion, is not a good option for chroinic pain management but may be required on a short term basis.
Ralph Caccese, MD (Radiologist)
-
Ralph
- Veteran
- Posts: 180
- Joined: Sun Dec 29, 2002 5:13 am
Erik,
In many poeple, IC and CP may be the same thing. In terms of symptoms, the two can be indistinguisable. Maybe you do have IC. There is a theory of dysfunctional lower uroepithelium which means the linning of the urethra as is passes through the prostate may be diseased as well as the linning of the bladder. We may be talking about several different diorders with similar symptoms. Elmiron and Neurontin covers many bases. No one really knows what is being treated, but they are working from an intellegent position. Under the supervision of a doctor, there is no harm in experimenting a little. Don't do this on your own. Most important, realize you are not going crazy and imaging these problems. The symptoms are real and feeling like you are going hysterical is no unusual in many patients. Above all, do not under estimate the role of diet. If I drink regular or decaff tea for a few days, I'm headed for trouble. Now all I drink is Rooibos tea when I want tea or coffee.
In many poeple, IC and CP may be the same thing. In terms of symptoms, the two can be indistinguisable. Maybe you do have IC. There is a theory of dysfunctional lower uroepithelium which means the linning of the urethra as is passes through the prostate may be diseased as well as the linning of the bladder. We may be talking about several different diorders with similar symptoms. Elmiron and Neurontin covers many bases. No one really knows what is being treated, but they are working from an intellegent position. Under the supervision of a doctor, there is no harm in experimenting a little. Don't do this on your own. Most important, realize you are not going crazy and imaging these problems. The symptoms are real and feeling like you are going hysterical is no unusual in many patients. Above all, do not under estimate the role of diet. If I drink regular or decaff tea for a few days, I'm headed for trouble. Now all I drink is Rooibos tea when I want tea or coffee.
Ralph Caccese, MD (Radiologist)
-
Erik
-
Erik
*-
Ralph
- Veteran
- Posts: 180
- Joined: Sun Dec 29, 2002 5:13 am
Erik,
Your post was VERY interesting. I wonder if the protein indentified in your case could be substance P? This is a protein which plays a big role in the production or sensation of pain. There are certain medications used to block this for other pian conditions. It would be interesting if there is a genetic component to your problem. Very good chance there is. The nerve growth test you had is not an ordinary diagostic procedure one could ask for from their doctor. Please keep us updated on the results of the study. It sounds very interesting.
I am a little confused about the any accredited quercetin product vs Algonot situation. I thought Algonot contained glucosamine and chondroitin and that was the only major difference between the two. I take any accredited quercetin product and Glucosamine/chondroitin separately.
Your post was VERY interesting. I wonder if the protein indentified in your case could be substance P? This is a protein which plays a big role in the production or sensation of pain. There are certain medications used to block this for other pian conditions. It would be interesting if there is a genetic component to your problem. Very good chance there is. The nerve growth test you had is not an ordinary diagostic procedure one could ask for from their doctor. Please keep us updated on the results of the study. It sounds very interesting.
I am a little confused about the any accredited quercetin product vs Algonot situation. I thought Algonot contained glucosamine and chondroitin and that was the only major difference between the two. I take any accredited quercetin product and Glucosamine/chondroitin separately.
Ralph Caccese, MD (Radiologist)
-
Erik
Hi Ralph,
I'm 32 and have had CP for 5 years and have tried many, many treatments. I am part of the NIH CP study through Northwestern University. I have never though (until now) treated my condition through a "neurological" protocol so I am very eager to take this "path".
Erik
PS - as far as the difference between Algonot and Quercetin's "make up", I really don't know much about that....all I know is that for the first time since I first got CP five years ago, my legs at times have been in pain/intense-soreness. This happens to cooincide w/ starting any accredited quercetin product a few week ago. So, keeping that in mind, maybe I will stop the any accredited quercetin product and try Algonot Plus instead. We shall see... too early to tell...
I'm 32 and have had CP for 5 years and have tried many, many treatments. I am part of the NIH CP study through Northwestern University. I have never though (until now) treated my condition through a "neurological" protocol so I am very eager to take this "path".
Erik
PS - as far as the difference between Algonot and Quercetin's "make up", I really don't know much about that....all I know is that for the first time since I first got CP five years ago, my legs at times have been in pain/intense-soreness. This happens to cooincide w/ starting any accredited quercetin product a few week ago. So, keeping that in mind, maybe I will stop the any accredited quercetin product and try Algonot Plus instead. We shall see... too early to tell...
Last edited by Erik on Mon Feb 03, 2003 8:37 pm, edited 1 time in total.
-
webslave
- Maintenance
- Posts: 11432
- Joined: Wed Oct 30, 2002 3:18 pm
- Location: Please give your location so we can help better
Remember that it is quite common for people to experience an initial worsening of symptoms on Quercetin. My explanation, based on my own intuitive thinking, is that the ducts are opening and allowing trapped and irritating inflammatory secretions to run down into the prostate and urethra.
Good News! The great ProstaQ is BACK at last! You must try it.
| HAS THIS SITE HELPED YOU? Say Thanks by donating. Keep the Forum alive on the Internet! PayPal link at end of page ↓ Contact me at support at ucpps.men | |
-
Erik