Health Organization for Pudendal Education

Many thanks Cora for this update, you have been through a terrible time with your own pain and the trauma of your husbands illness. Lets hope that the remission stage lasts and that you can both enjoy some time together with your child...that is most important right now. I admire your courage at this tough time.

Very best wishes

Amanda

Thanks for the continued support here no matter how long I've been AWOL. I hope I can help others who may have had similar experiences to me. we are taking life day to day and just to clarify I have no human kids but I do have a border collie that brings us both lots of energy and joy . People often ask me if I was helped by PT. my response is complex I was definitely helped but not cured. My sitting tolerance is better even with the low dose of bupenorphine. My advice for
Tapering is to go very slow and drop doses at about ten percent of the total daily dose every three weeks or so . Hope this can help

COra

Re Lyrica: I woulnd't be afraid of switching from neurotonin to Lyrica.

I got PN from a botched surgical procedure. I was at level 8-9 on 10 scale. My neuro started me on 1800 mg/day of neurotonin but I had side effects so she switched me to a low dose of Lyrica. The dose she prescribed was too low and I had to increase it beyond the level she was happy with so I got a new neurologist.

I have taken 800 mg/day of Lyrica for at least 8 months and have gained a ton of weight. I know some of this weight gain is due to being more inactive, but not all of the weight gain can be blamed on this. Weight gain is a definite side effect. I know of no other side effect, though I guess I am physically dependent cuz the idea of being deprived of it makes me very panicky.

I have taken tramadol which seems to be especially good for PN, but it causes terrible constipation, and I have developed tolerance, so I can't really use it any more.

Hi
This post is about butrans the patch mentioned by Cora.
Cora I am so glad this helps you. My doc took me off Nucynta (which hadn't done much for me)and put on the Butrans patch in late March...
My issues are severe sitting and standing pain...They began with IC/PBS in 2006 and later the sitting issues set in.. In Sept 2011, severe anal rectal pain at the anal opening set in as well.It happens even with walking or being on my feet for any period of time... the Butrans has not helped in allowing me to sit or stand w/out pain..I have been trying to reach my doc but am still waiting for a definitive response... She mentioned I could take off the patch and now wants me to go back to nucycnta this time time the ER version as it si good to have a steady dose in the system..My thought is why re-start a med that never helped me to sit etc..(tho I admit I varied the doses as I didn;t want to go too high on ineffective med.)
to further compilicate matters I have urinary hesticancy-- my pelvic floor freezes up in response to some meds and it feels like Im not emtpying completely the urgency is there constantly--lately ...
But scan and ultrasound test have shown that I do empty fine ...no retention or residual..
I know we are all so different but any one have these issues and if so have you been able to find a pain med that you can tolerate and is effective?
Thx I really could use the help as the abovepain has been un-bearable for ages...don't know how much more I can take, my family feels helpless,,as do I.
also can be we be admitted to hospital for severe pain?...I have treid to get my doc to do so, on several occasions this past year and she has said they won't admit me for pain. Just want them to put an IV in for awhile so I can feel some relief..?
Thx so much folka and Cora my best wishes to you and your family,

Sorry for typos.!!

kathyd,

I'm so sorry things are so hard right now. I don't have much imput unfortunately about the meds, hopefully Cora will respond soon. If not, send her a PM and maybe she will get email notification of it.

As for being admitted to the hospital for pain. I don't know if they will admit you, but they can't stop you from going to the ER with pain. Maybe then you could talk the ER doc into admitting you overnight for pain management. Do you see a pain management doctor? Unfortuantely I haven't had very good luck with pain management. All they want to do is inject. No one wants to manage meds any more especially for those of us with uncontrolled pain. Don't give up. Just take it a day at a time and keep searching for help.

Hi Kari,
Thanks so much for your support. I really appreciate it..and I am thinking of you and hoping you are feeling better.
I tried to send you a PM but Im not sure it went out correctly..I sometimes have trouble navigating this site on my computer.
I will email you, as that always works fine!
about pain docs, my experience has been much like yours, they tend to be more interested in blocks and other procedures which are more invasive.
My regular pelvic pain gyn rx'd the Nucynta ER but I have to wait until my pharmancy receives it as they didn't have it in stock
meanwhile she also recommended methadone which was given me by the Pain mgmt guy several mos ago...
I hadn't really given it a shot as I was afraid of the side effects. Thinking about what to do.

Meanwhile how are you doing? I am thinking of you and keeping you in my prayers
Warm regards and thx again!
Kath

Just want to say hi and not be such a stranger and get to know people here again. So far things remain stable with my husband and I am continuing with the bupenorphine taper. I am down to 1.25 mg a day of the bupenorphine which i am using to taper. It's been way more comfortable that trying to do it on conventional opiates. I'm not on a dose that covers pain anymore and I now know that my centralized pain has calmed down considerably. My sitting tolerance has improved. I still drive with a cushion that I can go to a movie or out to dinner without too much trouble. That is a huge improvement to me. We'll see what happens when I am completely off as i know there can be some rebound pain but I am motivated to get through that phase. I know everyone is so individual and I went to PT for close to 3 years then stopped when we weren't making ground anymore. And now I'm at 7 years with this and the past year and a half I could tell things seemed a little better on their own. Well, not completely on their own- tai chi, walking, avoidance of triggers, meds all helped to tone down the sympathetic neural activity that can keep pain at high levels. I still have my flares, but overall things are better. Seems like time has helped. So, if any of you have questions about using bupenorpine for chronic pain I can answer a few or refer you to someone who knows a ton on the topic a psychiatrist who used to be a pain specialist , I hope everyone is doing well, enjoying the summer in our part of the world and the ? winter or fall down under.
All my best
Cora

Cora, nice to hear from you! I am so happy for you and the hubby that he is stable and that you continue to progress as a slow but steady pace. To me, your hard work decreasing your meds shows what a true champion you are. Prayers and hug sent to you.

Hi Cora,

It's great to hear you are continuing to improve and function while still lowering your medication. You have taken a very common-sense approach to all of this and patiently hung in there with a conservative approach and I admire you for that. I'm glad to hear your husband is stable.

Best,

Violet