Maybe our diagnosis is chronic pain! We have to erase that memory of the nerves, tissues... That's why I thought this clip was so interesting..

Alyssa,

Have you had any success or Improvement with biofeedback? The closest specialist physiotherapist that can do it for me is about 1.5 hours drive.

Yes i do believe that nerves can get in the wrong state so keep sending the pain signals...if they can change, they have to be able to be changed back :)

I don't want to live with chronic pain for the rest of my life either. I guess it could always be worse for us I suppose.

Omb,


How long have you had the TMJ pain? Did it come before or after the rectal issues?

Unfortunately for me I did not have any pain relief with biofeedback but it did help me to learn how to properly relax and contract muscles; I think it's worth a try!

I have had this bout of tmj for around a year, so after my bum troubles.

Alyssa, I have an appointment with a pelvic floor physiotherapist on jan 29th. I have seen her before a couple of years ago. I will get her to check me out and re-set my biofeedback machine.

OMB

OMB,

I hope it works out for you and good luck with it; my appointment with my pelvic pain specialist is on Monday...

OMB,

Hopefully one day your bum will be truly owned and you can get away from this frustrating condition. Are you taking anything for pain management? My Pain specialist has put me on Amitriptyline and I find it helps with the TMJ pain as well.

Alyssa, good luck on Monday... I hope it helps x

Pafen, I have been put on gabapentin.... But I don't notice any difference in pain relief at all. I have been taking it since 19 December.... Just upped it to 300 mg on Friday... Feeling lightheaded with it. I have 3 appointments this week
Mon.... Gp to discuss gabapentin
Wed ... Acupuncturist for a consultation

Fri.... CRS follow up.

I hope I get some answers this week I really do. I'm at the end of my rope with all this to be honest. Enough is enough.

OMB,

Good luck with your appointments too...

Omb,

I was put on gapapentin early on when my condition turned chronic in late 2012. From memory it was 300mg 3 times a day. If you're only taking a single dosage of 300mg per day I wouldn't expect it to help with the pain much.

My pain doctor suggested I try lyrica instead, which does seem to help however the sedating side effects are difficult to manage at the dosage high enough to help with the pain. Originally I was put on 150mg twice a day, I have since dropped this back to a 75mg tablet in the morning to help with the bowel movements. I found on 150mg I was just too spaced out.

My pain doctor told me for treating nerve pain the dosage really needs to be 300mg/ day minimum. I guess if it's severe enough you could put up with the side effects for the reduction in pain.

All I can suggest is if the gapapentin doesn't work after trialing it for a month or more you could try lyrica. It worked better for me anyway. I take this plus a dosage of endep at night.

Sometimes I have good periods where the pain is quite minimal and I think to myself I am getting better but it always seems to flare back up again, very frustrating.

I wonder if it's some kind of nerve damage from all teh previous surgeries or central nervous system wind up, from being in pain from the rectal issues to begin with.