OMG! I think I have found other like me!

[Violet M]

Ed, it's good to hear that your neurosurgeon is listening to you. If you want you can print out the fact sheet in this thread on the forum:

http://tinyurl.com/3hqbqpz

Best wishes as you pursue a diagnosis. It helps if you look at the drugs as a temporary measure until you can find the right treatments.

Take care,

Violet

[donstore]

Ed,
As my signature says, I have found Lyrica to be quite helpful for me. You have to be your own doctor with this problem. Keep us posted on how you are doing.

Don

[MrPain]

Small update. Stopped taking the nucynta the last day or two simply because I felt that I didn't need it any longer. Not because of the PN pain, but that most of my disc pain is almost gone. Well the nucynta was helping cover a lot of the pelvic pain all along not just the disc pain as I had thought. Started taking it again. I was looking for some kind of positive milestone.

Neurosurgeon office called to reschedule appointment for tomorrow. I was really wanting to discuss this with him. All of this and almost 2 years later I'm right where I started. Mentally it's wearing very thin.

Thanks,

[greeneyes]

Hello Mr. Pain.

I am sorry to hear about your ordeal. I also have disk problems at L4-L5 and L5-S1. I have had chronic back pain for 16 years. It started at L5-S1 in 1995 and when the pain flared badly in 2006 I learned I have a bulge at L4-L5. I developed PN in 2006 also. I am certain the back pain and PN are related but no one has been able to find one. I had a spinal cord stimulator implanted last year and I take methadone for pain. I am curious whether you think the Topamax is helping. I was on it early this year; however, I didn't like the side effects and it didn't seem to do much. It sounds like the doc's haven't linked your back pain with the other problems either.

[kathyd]

Hi Mr Pain,
So sorry to hear what you have gone thru and hope you will soon get relief.
I have urinary issues and sitting pain. For me it started with painful bladder (couldn't get relief afer peeing, need to push on belly to get it all out... need to pee feeling always there etc.
Over a few yrs my sitting pain developed gradually, due to several possibilities, weight loss from Interstitial cystitis diet,
too much pelvic flr PT--(this was highly recommended for bladder issues but never really helped me)..
nerve blocks and other possible causes. My inability to sit later became pain on contact like you described.
Anyway I don't tolerate pain meds well, they aggravate my urinary hesitancy and cause retention.
Nucynta is the one pain med that I seem to tolerate but lately it has been useless in helping my bladder issues or my sitting ones. Maybe I am not taking enough. I am up to approx 300mg daily, sometimes not that much.
What amount do you find helpful in getting pelvic pain relief?
My pain levels are off the charts, but I am always scared that upping a med or interacting with other meds will cause more retention..
If you like you could PM your reply, as I sometimes have trouble locating my replies on this site...
I wish the best in your quest for relief!
Thanks!
Kathy

[MrPain]

An update here.

Here are the issues I've been fighting.

Coccydynia (multiple steroid injections and one Ganglion Impar block)
Piriformis cramping when sitting.
Extreme sitting pain and full PN symptoms.
Herniated L5-S1
Morning Extreme Muscle pain and cramping.

I was put on cymbalta to address the depression I had developed over 2 years of constant pain. It significantly lowered my pain volume in regards to the sitting pain and some of the lower level muscle pain.

Finally at my request the Pain management doctor referred me to another pain management doctor that was also an anesthesiologist for a Pudendal nerve block. The moment he completed the injections (local and steroids) the numbness perfectly masked my sitting pain! Bingo! We have a winner!!

For the next 4-5 days I had no symptoms and could urinate normally. But... the relief was short lived. Most, but not all of the symptoms have returned after about 4-5 days. But the important part was that not just I know what it is, but that the doctors now acknowledge the diagnosis. Next we need to determine if there is an entrapment somewhere or if it's worth just trying the steroids injections again. BTW, even with a local these injections were very uncomfortable.

So after the PN symptoms started to return my pain management doctor upped the Cymbalta to maximum dose. This was based on the fact that the low dose helped quite a bit. After another 2 weeks the sitting pain is about 90 reduced. At least to the level I can function normally for the most part. The Cymbalta also almost totally eliminated all of the morning muscle pain and cramping I've been living with for the last 20 years or so.

I also started wearing an air inflated lumbar belt. It was also a miracle. Wearing this when getting pain or during activities that would normally cause me back problem has totally eliminated the lower back cramping and most of the disc pain. I'm now taking Nucynta ER, which is brand new. This medication almost totally rids me of lower back pain.

So the combination of Nucynta ER and Cymbalta has pretty much rid me of most of my pain. It also helps with the Piriformis cramping which seems to be tied to the other conditions.

So now my only remaining source of major pain is my Coccydynia. I was referred back to a different doctor for another Ganglion Impar block. Well, I never got that far. Right at the tip of my tailbone I started to swell, turn red and warm as well as increased pain. This is new. Was diagnosed as an infection of unknown origin. Was given Antibiotics and Motrin. After three days it has reduced in pain and swelling some. The doctor said that it may have been a slow growing infection from the nerve block about a month ago. ???

I'm now waiting on the second ganglion impar block to address the tailbone issue.

In summary, the Cymbalta and Nucynta ER have really helped alot. Actually getting the Pudendal block and getting a postitive response has been of great relief. It's a start that's taken 2 years to get too. Using the advice from here about being your own doctor is very true and exactly what I did. I could not have done it without the knowledge and information obtained on this website. Thanks!

Thanks,

[Violet M]

Hello Mr. Pain,

Glad to hear you are seeing some improvements!

Just wanted to let you know, I'm not a big fan of repeated nerve blocks. I've known too many people who got permanently worse from them. Sounds like you may have your diagnosis now -- so in that regard, the nerve block was a good thing. I hope that you will be able to fight off the infection and continue on with your plan of treatment.

Best wishes,

Violet M

[helenlegs 11]

You do seem to be ticking a lot of boxes and getting down near the bottom of the list of pain symptoms. Good work. Here's hoping you keep going until the last of your pain problems have been addressed.
Take care,
Helen

[MrPain]

Thanks for the heads up on the blocks. I'll discuss it with my doctors.

I cannot tell you all how hard it was finding a local doctor that could do a PN block let alone a doctor that knew what the pudendal nerve was. I discussed this with my Pain doc a couple of times. He socialized it around and found out that a he already knew another pain doctor that has been doing them. Once we found a doctor to do the block, my primary pain doctor asked me if I wanted to try the PN block and see what happens. Mainly because I kept bringing it up and he didn't have any better ideas. After the block showed positive he congratulated me on diagnosing myself. That's one of the reasons I like this doctor. He listens very well and once I displayed that I do my homework he stopped talking to me like a patient. We now have conversations.

Now that we know the area of the problem we have to determine if it's just PN or PNE.

Also now that the volume is turned way down I can actually feel the the sore, tender spots (about 1/4 inch spot) where the nerve is. I can also tell now when I'm starting to irritate the nerve by sitting. There was so much high level pain I could feel any of this prior.

I also discussed with other medical professionals. Both doctors and nurses and none of them know about the pudendal nerve and these conditions. It's truly amazing. I makes be believe that there are many more out this with this and being diagnosed with something else. If I just blindly followed all of the medical advice i got, I would be dead.

The lesson learned here is that no matter how small your medical problems are, get a second opinion. Do your homework and don't blindly follow without some education and thought.

One last final thought. Of all of these conditions, the Pudendal nerve pain was by far the most disabling both physically and mentally.

Thank you all again,

[helenlegs 11]

I envy you your wonderful doctor, he is worth his weight in gold to you I know exactly what you mean about 'once the volume is turned down', I had a similar situation, I knew I had piriformis/ sciatica and pudendal problems but it wasn't until I had a piriformis botox shot that I could tell one pain from another and realised my ischeal tuberosity up tp ischeal spine hurt separately too. It had just merged into one big pain in the bum before that.
By the way have you had your piriformis muscle checked too, it does sounds like your lumber spine S1/L5 is causing you problems (already had that op 8 years ago) but piriformis can entrap the sciatic nerve mimicking disc herniation.
Take care,
Helen