4.19.2011

Where's My Pain Decrease?

It seems only fair that if I increase my pain meds by 50%, the pain should decrease by an equal amount. Stupid world. My cognitive clarity has decreased by about 30%. I would take that much less pain. I'm willing to negotiate!

4 comments:

Quinn said...

I'm so sorry you cannot find relief. I hope that Dr. Goldstein can help you. That's the worst thing about pudendal neuralgia: pain meds don't work on it. It's nerve pain, not real pain. All the pain meds can do is make you less cognizant and indifferent to the pain.

Have you tried Neurontin or Lyrica?

My heart goes out to you. I know what you're going through. You're very strong and brave to be fighting this as hard as you are.

Husband said...

The pain meds can really be a pain, and I mean that literally. My wife was put on Valium suppositories and switched antidepressants (low dose ones for pain management) at the same time in an effort to help with her tight pelvic muscles to try and remove the remaining pain she had.

Well wouldn't you know it instead of getting better things started getting a lot worse again. Do to a random happening she stopped using the Valium suppositories and things seem to be moving in the right direction again.

So hang in there and don't be afraid to switch things up if they aren't working for you. Good luck with Dr G. We will be anxiously awaiting your report.

Whitewraithe said...

I feel and hear your pain.

I've suffered with PNE since 1981 with little or no help from the medical community. It wasn't even diagnosed until 1999.

The doctors have tried to kill me with narcotics and anti-depressants which do no good whatsoever for me. Lyrica and Neurontin are useless and make me feel like I'm in another world. We need meds for nerve pain - why don't they have any?

If you've had the condition longer than six months nerve blocks are ineffective.

I was on methadone for four years but it shut down my system and nearly killed me, then the doctor treating me abandoned me and left me for dead. I had to go into a secondary type of rehab facility because I was a danger to myself and others. I was taken from the hospital in handcuffs and shackles to the state lunatic asylum because of my second suicide attempt. I'm not crazy just insane with physical pain that will not abate.

When I got out I went to a pain specialist in my local city and was told I was a drug seeking addict. After that I gave up.

All I take now is Tramadol due to the good graces of my internal physician but most days I would rather just be dead and out of pain. I'm not living, I'm surviving and there is a huge difference.

There are only 8 doctors in the entire world that can effectively treat PNE and only 4 or 5 are in the U.S. You have to go to France for the finest care. Believe me I've researched this for six years.

I have an old site you are welcome to peruse and see if you can find something useful.

Best of luck and yes, we need the medical community to help us but I don't see that happening anytime soon.

I have written every organization with little to no response and the national PNE society never answered my letters.

God speed,
DJ Normand

My site:

http://americaspaindemic.bravehost.com/index.html

ICantBreatheForMyPainInMyCrotch said...

How true your comments are -All of them. I am am a 49 yr old woman who has suffered from this little piece of HELL since I was 48. There are no current medical answers nor is there anyone in our U.S. medical community seem to give a DAMN about the severity and intensity of the pain. It may not be terminal in itself but it causes terminal SUICIDES. The pain is unbearable, untreatable, and you want to know the beat part????? THIS DAMN CONDITION IS F'ING INVISIBLE! YEP NO ONE CAN SEE IT HURT SO NO BELIEVES IT EVE EXISTS! The doctors look at us like we are crazy hypocondrites and so do our families and friends. (For most part). Im a registered nurse so it's awfully hard to work and hold my CROTCH!!!! I WANT TO DIE.