hypersensitive nerve pain cyclel

[gcman]

I have had one bout of PN which my PT said was caused by the nerve being stretched over part of my SIJ that had become immobile. After some treatments he remobilised the SIJ but said the nerve and its branch rectal nerve had become hypersensitive and set up a pain cycle. He said it would eventually calm down and it did after about 12 months which was very tough pain wise. I basically used no pain meds. The same part of the SIJ recently froze up again and the PT has freed it but I am facing the same waiting game hypersensitive pain cycle again. Anyone got any practical tips to help me get thru this again. I see a pain managemet doctor next month. I know I'm probably chasing a magic answer but gotta try.

[nyt]

Some individuals find ice, heat or alternating the two helpful. Has the PT recommended any procotols to help the nerve settle down? If you know any specific triggers that make the pain worse try to avoid those activities or minimize them. If you can't pinpoint any trigger trying keeping a diary. If the rectal branch is the problem keeping bowels soft and regular help. In the search engine in the top left you can search under constipation and there are numerous threads with suggestions how to keep regular. A squatty potty, which you can search on Google, is a good device to have even if you don't have problems as it keeps you in a squatting position for defecation. The IC forum group has some good suggestions for recipes for suppositories that help with pelvic pain. One real easy one if the pain specialist is knowledgeable about rectal pain is using valium suppositories. You can just insert the whole pill into the rectal.

[gcman]

Thanks Nyt
I was on to most of those things but the squatty potty is a suggestion I will follow up. As for avoiding things that trigger the pain unfortunately in my case that is usually a morning toilet visit (bowel motion) so I just can't avoid it. My PT says this is not uncommon and I think I have seen people elsewhere on the forum with the same situation. Stating the obvious I know, but this whole PN/PNE thing is such a curse on everyone affected by it. The courage of some people on this forum is inspiring. My PT (who has a strong interest in PN) says he estimates it will be about 20 years before PN is a condition that can be 100% successfully beaten either thru medical procedure and/or drug technology. Who can wait that long.

[Violet M]

GCman, I used to know one woman who would get into a tub of warm water after BM's to help calm the nerve down. It could be even more effective if you ended with 30 seconds of sitting in ice water. I used to sit in alternating hot/cold sitz baths and it really helped me get through some of the worst of PNE. I describe in in detail in this thread. http://www.pudendalhope.info/forum/view ... =25&t=5267

Violet

[kathyd]

Hi folks, just noticed this thread,
I am having major trouble getting bowel movements to happen normally over the past several mos.

ITs gross but i got in the habit of using a gloved finger in the back of the vagina to push the stool out of my tight spasmed anal sphincter.
Some well known PTs recommend this, but my PT is not crazy about this habit. But when I need to get relief I feel I must do so!

As a pain pump patient I was told by the pump nurse to use a laxative to prevent constipation from the meds in the pump, back when the pump was first installed. I've done so since. I wonder if this was a mistake?

I now have 2.5 Dilaudid and about 6 mg of Bupivicaine, in my pump. Ive tried many combos of meds since 2013 but frankly none seemed to reduce the pain very much. I was prbly not a candidate for the pump as my pain is from tight muscles stuck in spasm (which I didn't know back ) when I had the pump installed..
Now however, as we noted months ago when we tried to titrate down on the meds I felt more pain. So guess my body got used to the pump meds.
I am waiting to talk to my pain doc about that event and trying another idea he has.
Meanwhile I can' understand why my bowel cycle is so out of whack..
for ex: This week one day earlier in day I may have some 'output'--sometimes large and then nothing for rest of day. Or if Ive had BMS at normal times for Me, which is after meals, then the next day I can't go! Prbly cause I may be empty.
But I still have the tortuous urge that something is there ,,which starts when I eat.

Consequently for the past several mos. I stay in bed until late AM,and eat around noon, and then it all begins.
I eat dinner later, and that's it for the day. I do so to avoid that "after meal" urge.
It occurred to me that maybe I'm having trouble with regular normal BMs becasue Im only eating 2 full meals daily ,
so maybe there's not enough in my stomach to create a normal bowel cycle??
Does this make sense..?
Also when I have pooped lately, it hurts so badly afterwards.. as stool seems harder.
I haven't changed my diet.
Nurse keeps telling me to hit my bolus ( a button on my pain pump to release more meds and get relief) but I'm afraid will cause even more bowel issues. She assures me it won't.They have also suggested Xanax --a med I have on hand) to relax me...and stop the clenching which contributes to the anal spasm and pain..
Again Im afraid of more bowel issues.. but my practitioners say Xanax does not constipate ...( i realize all meds say they do if you read the info that comes with them) but Xanax is apparently not a med to worry about in that respect.
I think I have gotten into a hypersensitive cycle as well.
Pls any suggestions on how I can get out of it?
My doctor is not much help. my nurse blew me off, when I wrote to her about it. I see my PT on Sunday, who is the only practitioner (along with my urologist ) - whom I trust. Even mt PT does not advise me much about bowels, saying the tight muscles spasm is the culprit.. and that I must relax..
Pls someone answer.. Im in agony, yet I have a busy life with hubby kids, dogs social life etc, that I try to keeep normal as that has helped..
Im thankful for that but sad that my loved ones have no clue how much pain Im in, and they turn way when Im in really bad shape.
Pls help! with any suggestions to get me out of this cycle.
Thx in advance!

[kathyd]

Hi Sorry my post came up twice, I thought I had typed it in the wrong spot and hit submit again just to make sure it was there.
Sorry for typos and punctuation errors.. I proofread but don't find them until after I post!
Hoping for any advice from you guys on breaking this cycle of both pain and bowel dysfunction as they are so related..and come from my spasmed pelvic floor...etc.
Thx Again!

[Mod 15]

kathyd, I removed one of the double posts for you.

Mod 15

[Violet M]

Kathy, I found a good article in Medscape called A Rational Approach to Constipation. You have to google it and go to it from google and then go to the treatment page. If I post the link it just takes you to the medscape login page.

I don't know if anything in the article will help you but I noticed it said if you are on opioids that stimulant laxatives are essential. I think you have to be on a daily maintenance dose so you don't get backed up and then have even worse issues.

Violet

[kathyd]

Thx Violet for the article .
I'll check it out.
I've tried every laxative out there ...they work, but I suspect they cause the urge feeling I have.
It's hard to know... wish there was a way to find out. I know my body, after years, is hypersensitive to any pain or irregularity.
Thx for ur response!

[kathyd]

Violet,
Just wanted to add, I really appreciate ur looking for that article on Medscape for me.
I will google and see if if comes up.
Thx again!