Doc thinks I've got PNE......

[calluna]

Hello again Kim, glad things are a bit better for you.

I agree with you, I have to say that those exercises sound exactly like Kegels. Are you finding any increased pain after doing them?

So glad you have been prescribed pregabalin now, and that it is helping - what dose are you taking at the moment? By the way it is not an anti-depressant at all - it is an anti-convulsant (drug for seizures) which is also used to give relief from neuropathic pain.

You asked about two other meds - Gabapentin is also an anti-convulsant which works in a very similar way, it is much cheaper than pregabalin, tends to produce more side effects, and needs much bigger doses to be effective. Ativan is a trade name for an anti-anxiety drug called lorazepam. It also acts as a muscle relaxant and anti-convulsant.

Please let us know how the physio goes.

[birdlife]

Hi Kim, glad you posted back. I can't sit for long at the moment but will send you a PM as soon as I can. Meanwhile if those exercises (which sound exactly like Kegals) flare you, then stop. And make her aware that she's making her patient/client worse. Never do anything that flares you, whatever it might be.
Speak to you soon, just biting the leg off a (dead) chicken . Take care,

[GoingBananas]

Hello again Kim, glad things are a bit better for you.

I agree with you, I have to say that those exercises sound exactly like Kegels. Are you finding any increased pain after doing them?

So glad you have been prescribed pregabalin now, and that it is helping - what dose are you taking at the moment? By the way it is not an anti-depressant at all - it is an anti-convulsant (drug for seizures) which is also used to give relief from neuropathic pain.

You asked about two other meds - Gabapentin is also an anti-convulsant which works in a very similar way, it is much cheaper than pregabalin, tends to produce more side effects, and needs much bigger doses to be effective. Ativan is a trade name for an anti-anxiety drug called lorazepam. It also acts as a muscle relaxant and anti-convulsant.

Please let us know how the physio goes.

Hi Calluna,
Yes I'll let you know how I get on and I'm definately going to quiz her about all this . My next session is a week today. I find doing the exercises make the area a bit more "tender" might not be the right word. I'd give anything to be able to sit properly!! I tend to kneel or stand for most of the time and when my hubby thinks I've been doing way too much, he makes me lay on the sofa and if I lay on my back with my knees bent and slightly apart, it's as if there's absolutely nothing wrong for about an hour then my right buttock kicks off with pain.

The Pregabalin, I asked for them telling the doc that someone has mentioned they were magick pills. She did look at me a bit odd and said "I've never known Pregabalin to be prescribed for this kind of thing" but she said OK to it as I'd had more time to research about PNE than she had ( I printed off your link and delivered that with a covering letter the day before my appointment so she had time to brush up on it ). I take one 75mg capsule in the morning and one before bed roughly 10am and 10pm it seems to make it liveable. I'm certainly not having to take any paracetmol now which is such a relief in itself. After I posted the anti-depressant statement, I later found out that they were anti-convulsant pills. To be honest, I'm not fussed anymore, I'm passed caring (sadly) I just want to feel a bit more normal rather than have this constantly raging all day and night so I get distracted from my work.

I do struggle at times accepting I've got to change my lifestyle to accommodate this unwanted guest though but poo happens! On the up side, all my friends and family and working colleagues have been very very supportive and helpful which lifts me when I'm down

Well back to the grind. Thanks again for your help.
Kim x

[GoingBananas]

Hi Kim, glad you posted back. I can't sit for long at the moment but will send you a PM as soon as I can. Meanwhile if those exercises (which sound exactly like Kegals) flare you, then stop. And make her aware that she's making her patient/client worse. Never do anything that flares you, whatever it might be.
Speak to you soon, just biting the leg off a (dead) chicken . Take care,

Hello again,

Got the PM many thanks. Thanks for confirming my exercises sound like Kegals as that exactly what I thought as we started them. I did do them for a few days after but it did make certain areas niggle more so I've now stopped!

Forgive my ignorance but in your signature you've got "started TP massage again" what's that then?? and does that help the pain?? Who does it Yourself or someone else??

Thanks heaps
Kim x

[birdlife]

Kim, I posted details about the triggerpoint massage under 'Success - with a twist' if you want to read it. Very glad you've stopped the Kegels. By the way, a knee pillow helps when you're sleeping, keeps the pelvic floor from squashing the nerve. And if you've pain midway in your right buttock, it could be the piriformis muscle and you can work on that with tp massage using either your thumbs, a small ball, or a specialist massage tool like the TheraCane or BodyBackBuddy. They look like tools of torture, admittedly, but be brave . Have answered your pm.
Take care,

[calluna]

Hello again Kim - if you are not getting sufficient pain relief at your current dosage, could I urge you to speak to your GP again and tell her this? The dose with this med can go a lot higher.

I did get a degree of pain relief at 150mg and I was so pleased that something was actually helping that I didn't at first consider that maybe it could be better still. When my GP took the dose up to 200 and then to 250 things improved even more. If I'd not had the surgery, I'd have asked to take the dose higher yet.

If you do reach the point where you can sit without pain, please be aware that it is still something to be careful about as sitting compresses the nerve.