Central Sensitization

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
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pizzarios
Posts: 41
Joined: Tue Jul 10, 2012 8:47 pm
Location: United States

Central Sensitization

Post by pizzarios »

I've only had constant pain for 1.5 months now.
Gabapentin won't touch it, and lidocaine only lasts 20 minutes or so. I am working to try and see a pain management doc, as no one is willing to prescribe stronger meds for me.

Pt just started and is slow going.

The pain gets worse week by week. It's also changed forms a few times, and started to effect my hips/joints/legs (tingling)

I am terrified of central sensitization. How long does one have to have been in constant pain in order for that process to start to set up? I know ppl go misdiagnosed and live with this pain for years. My heart goes out to them.

I know I may seem to come off like a paranoid craz person. I assure I am not - just a very fearful stay at home mom, with limited resources, and lots of daily physical demands, and no friends or family to help. Rest is not really an option.
Not officially diagnosed. Pain began following MANY typical pn causing activities.
Intermittent IC type pain started 5/20/2012
Urologist said IC - did diet, meds etc with no improvement
Constant pn type pain and burning started 7/1/2012
Gp rx gabapentin & lidocaine, no improvement
Started PT 7/23/2012. pelvic MRI that showed osteitis pubis. PT miofascial on inguinal & psoas, pn pain greatly reduced. hip joint/lumbar pain started. 12/20/2012 - Hip MRA shows labral damage.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Central Sensitization

Post by HerMajesty »

I started a thread quite awhile ago about some info I learned about a med regimen which helps prevent central sensitization. Here is the link to that thread:
http://www.pudendalhope.info/forum/view ... =25&t=2798 I continue to take the propanolol as mentioned in the thread, and it has been of great value to me.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
pizzarios
Posts: 41
Joined: Tue Jul 10, 2012 8:47 pm
Location: United States

Re: Central Sensitization

Post by pizzarios »

Great info in the thread hermajesty :)

Will the average a pain doc know about these things? Or do you think I'll have to bring in info from this site as I did with my primary care?
Not officially diagnosed. Pain began following MANY typical pn causing activities.
Intermittent IC type pain started 5/20/2012
Urologist said IC - did diet, meds etc with no improvement
Constant pn type pain and burning started 7/1/2012
Gp rx gabapentin & lidocaine, no improvement
Started PT 7/23/2012. pelvic MRI that showed osteitis pubis. PT miofascial on inguinal & psoas, pn pain greatly reduced. hip joint/lumbar pain started. 12/20/2012 - Hip MRA shows labral damage.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Central Sensitization

Post by HerMajesty »

The average clinician knows about using antidepressants, especially Cymbalta, for nerve pain, but I think the propanolol is a fairly new /unknown idea. That's why I posted a link to the biography of the Doc who presented the info, I wanted to give the idea some credibility in case anybody's practitioner is skeptical about this. My P.A. had heard of the idea but never tried it on anyone before me, but he keeps very up to date on pain care trends. When it comes down to it, if you have a Doctor who is unwilling to try you on a micro-dose of a blood presseure med, in a world where narcotics are being handed out like candy, something is just wrong. But I do suggest bringing in info from the site, it would probably help.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Central Sensitization

Post by Faith »

I tried to talk to a new pain doc today about the usage of propanalol for CS, but he said it was usually only helpful for chronic migraines :/ I've seen 3 pain docs, 2 at a major national teaching hospital, and non of them suggested or were willing to try drugs off-label usage. How much Neurontin are you on pizzarios? It took till I was on 1800mg to see any difference in pain and really 2400mg before my pain was better managed. Of course after my failed attempts with ESWT and botox my pain has become uncontrolled once again and 3000mg of Neurontin doesn't help much. I've tried pretty much all the other normal meds for CS. I've seen so many docs and some say I for sure have CS others don' think I do. It's very frustrating and confusing. All I want is my pain controlled better. Most pain docs just want to do interventions (nerve blocks, spinal cord stimulators, PRF, etc) and their knowledge of pelvic pain is not great usually. CS started about 3 months after my first PN pains began. It can be different for different people and some people never really develop CS. This is the mystery of the central nervous system.

By the way, you don't come off as a "paranoid" or "crazy" person. I am at home with a 3 year old as well and it's hard. I feel crazy when I go to Dr.'s and tell them I continue to develop more and more pain, but unfortuantely I'm not getting much help. The frustrations of living in a rural area with poorly educated doctors when it comes to chronic pelvic nerve pain.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Central Sensitization

Post by HerMajesty »

You would think a Doc who was serious about his patients would at least be willing to do a peer-to-peer with Dr. Zolnoun, who is very well respected in the field of pelvic pain. I love how a practitioner would be afraid to try a tiny amount of a commonly prescribed drug "off label", but they are giving out methadone and MS contin and oxycontin right and left...these people kill me... :?
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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