Possible new sufferer looking for some help please

[Roger]

I'm still taking 200mg x3 a day. It's taking the edge off, but I need to drive occasionally so I'm a bit worried about increasing the dose to 300mg which I'm allowed to do. I did ask the Dr today and he did say be careful about driving! So I'm sticking with my current dose.
Nerve sensation is worse later in the day. Thankfully we have Stressless furniture which is very supportive.

Just done a Yoga class for an hour so now it's time for the ice pack and hot water bottle regime lol

And back to the gym in the morning

[janetm2]

Well let me see what I can say about your recent info. Sorry to hear no shortcuts but I would give the pelvic PT some time and collect up what ever they say ( this may help with diagnosis). PT figured out I had PNE and then sent me for official diagnosis my PN nerve was trapped between the two primary ligaments and so PT was actually not able to help until post surgery with pain releases etc. Not sure ehat the tingling is saying, maybe Violet or someone can give you a better read on that. I am going to say Yoga may not be a good thing ( I know we keep saying to stop everything) but I may need to research our pages to see the guidance for it. I was able to drive on Gabapentin except when I increased doses - took some time to adjust but we are all different and do nit want to takes thoses kinds of risks. You may want to try a different medicine at some point. I can sympathize with the pain having some flaring myself no matter the furniture and not sure what I want to do. Maybe the ice will help.
Janet

[rea]

Hello Roger,

I have been on Gabapentin for over a year. At first, I felt light headed and could barely walk, much less drive. My PM doc increased me each month until I got to 600 four times a day. I could drive except for the pain, not the medicine. As for the weight issue, I've always been active and slim. After PN, all activity stopped. Heck, my life stopped but my weight has remained constant. Maybe good metabolism....
Rea

[Roger]

I can't be doing with stopping life!

My wife reminds me to be positive. She knows about pain as she has osteoarthritis in the spine. So it's a blow me getting this as I'm the sole driver.

Having had little help to sort out a referral from the Dr because he says he is too busy and so is his secretary. I had to contact Dr B's clinic and tell my Dr how to refer me. Crap service! So will chase him next week to see if that has been done. There is an 18 week policy here for treatment......the clock starts when the referral is received by the specialist dept.

Just spoke to a Pelvic Floor Therapist who can treat men with this condition. So I'm seeing her on Monday at my own expense. She says there are a few things that can be done. So that has made me feel more positive.

I think the hardest thing is being positive and being in control. These are things that have previously tripped me up with my PTSD. So I need to meditate too and clear my mind. Whilst continuing to do some exercise for the same effect.


So if I continue to exercise........run, yoga, light weights, various exercise machines, push ups, sit ups, walking etc etc What is the down fall of doing that Vs loafing around the house and spending too much time sitting at the computer or in front of the TV?

[Roger]

Does Gabapentin cause flatulence? Or is that the nerves irritating my gut?

[Roger]

Hello Roger,

I have been on Gabapentin for over a year. At first, I felt light headed and could barely walk, much less drive. My PM doc increased me each month until I got to 600 four times a day. I could drive except for the pain, not the medicine. As for the weight issue, I've always been active and slim. After PN, all activity stopped. Heck, my life stopped but my weight has remained constant. Maybe good metabolism....
Rea

Hi Rea,

Thank you for reassuring me about the weight. I'm glad you've stayed slim!

I hope you don't mind me asking. Have you got PN or PNE?

I had a few light headed sensations when exercising or walking before the Gabapentin. So I don't need anymore.

[janetm2]

Roger,
I tried to focus on the treatments and feeling that was under control pushing forward through the drs, tests, etc. I am in America and did get through quicker than that 18 week wait! In the meantime though the therapist could get you in better shape. Your wife is experienced with chronic pain and it takes some work to battle but we do go on. I am sorry she has osteo and is unable to drive. I am hanging on to some driving but mostly dependent on my husband. I am not sure how much it will cost to keep excercising vice loafing around. I did not gain but one side effect of gabapentin is attention to detail (seemed dyslexia with numbers) and some minor issues like having a harder time remembering things or thinking of a word. This all comes back after you get off the drug. Keep putting on foot in front of the other and you will get through this in time. I am in the holiday time and trying to pace myself, just a little at a time.
Janet

[Violet M]

I will still explore pelvic floor therapy. But I'm not sure I want to start that before a diagnosis or not? What do you think? Will it over complicate things?

There are different types of pelvic floor therapy with some being more specialized toward pudendal neuralgia and others toward pelvic floor strengthening. With PN, the pelvic floor muscles are typically overly contracted and tense as opposed to some types of pelvic floor dysfunction where the pelvic floor muscles are just weak. I actually received my diagnosis from a PN knowledgable pelvic floor PT when the docs could not come up with a diagnosis. Pressing along the course of the pudendal nerve caused pain and a very bad flare-up afterward which confirmed the diagnosis. It also showed that the obturator internus, levator ani, and piriformis muscles were in severe spasm. So, I can't say what's right for you but for me seeing the pelvic floor PT was well worth it.

Violet

[Roger]

I will still explore pelvic floor therapy. But I'm not sure I want to start that before a diagnosis or not? What do you think? Will it over complicate things?

There are different types of pelvic floor therapy with some being more specialized toward pudendal neuralgia and others toward pelvic floor strengthening. With PN, the pelvic floor muscles are typically overly contracted and tense as opposed to some types of pelvic floor dysfunction where the pelvic floor muscles are just weak. I actually received my diagnosis from a PN knowledgable pelvic floor PT when the docs could not come up with a diagnosis. Pressing along the course of the pudendal nerve caused pain and a very bad flare-up afterward which confirmed the diagnosis. It also showed that the obturator internus, levator ani, and piriformis muscles were in severe spasm. So, I can't say what's right for you but for me seeing the pelvic floor PT was well worth it.

Violet

Thanks Violet,

I think you're spot on. I know come Monday I'm going to be told the pelvic floor muscles are rock hard (spasm) lol. Story of my life for a few years now. As was my Piriformis the other day before the acupuncture.......but I expect they have tightened again lol.

I'm stretching, icing and heat 3 times a day at mo. Not ran since Wednesday. But done some push ups, tricep stuff and sit
ups/crunches at home to keep me ticking over and loads of walking with the dogs.

Concentrating on two specific stretches which I and an old army physio friend think would be beneficial. So the Pigeon stretch from yoga for the Piriformis and another type which he called Surfing to stretch the nerves down there, followed by ice and heat reps. Not having any adverse reaction! So must be doing some good!

I have very recently noticed since the acupuncture, when I bend over from standing only, that I can feel a pulling tight muscle on the right side only, just under my testicles and into the top of my thigh muscle. So I think that is the one that needs stretching out! I can't imagine the experience will be pleasant for me! Lol But I expect it will be no worse than any other muscle release that I have had.........but the ice could be challenging lol.

Hey ho........no pain no gain was our motto in the Army!

I still have a gut feeling that with PN only, that stretching and doing some exercise with some adjustment like no cycling is the way forward. I don't think stopping and giving in is healthy, particularly if you are used to pushing yourself. And if you don't exercise I see no harm in some guided stretching.

But I can't say the same for anyone who has PNE (entrapment)! It must be awful to be in that situation! And you have my deepest sympathies and support, if you need it.

[janetm2]

Roger,
Since you will be going to PT you may want to talk about the exercises you are doing to see if they could be problematic. Otherwise carry on and good luck.
Janet