Hi guys,
I new to the forum and need some advice.
I know for sure i have a nerve problem and all of the symptoms point to PNE based on my research.
This has been going on constant, non stop for a year. However, the nerve pain has been much better than before.
My symptoms in the past include: pins, pricking, burning sensation, cold sensation, electric shocks, etc.
Now it's just burning and cold sensation. Off and on, usually worse when sitting and I usually don't have a problem when I'm sleeping (sleep on my side) It's weird. On a scale of 1-10 based on the Pudendal pain scale, I'm usually between 1-3 now.
I've been taking vitamin bcomplex, inositol, methylcobalimine, actyl l carnitine.
I've already been seen by 3 doctors, 1 dermatologist and urologist, along with blood tests, multiple std testings, hsv1/2 testings, prostate exam, etc. All negative. And they say I'm fine but I know I'm not fine because I get the light burning/cold sensations and it affects my personal/work life.
What would you guys suggest I do since on the pain scale I'm usually a 3/10 at the worst or it's more of a nuisance at times. If I have to live with this that's fine but I want to make sure I did all I could than just accepting this pain.
I read that surgery can make things worse so I'm not sure what to do. And I also heard that sometimes nerve can get worse if you don't do anything? Should I just wait it out and hope the nerves heal after 2-3 years since it feels better than 9 months ago? Nerve blocks? Vitamins/Supplements? Natural antidepressants (5-HTP, st.john's wort, SAMe)? Please help me because this has been a long year for me and it's affecting my life. Thank you!
-Allen
Newbie - PNE what would you suggest burning/cold sensation
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Newbie - PNE what would you suggest burning/cold sensati
Welcome Allen,
As you say there must be some nerve issue with the symptoms you describe and all of the usual tests being clear. My advice would be to start with a multidisciplinary approach, medication, lifestyle modifications, physiotherapy and cognitive and or mindfulness training.
A combo of an depressant and anti seizure drug can be a powerful tool to get things under control, especially good at halting any escalating pain that may be due to a central sensitisation (CS) . This CS problem doesn't always happen but as a precaution, getting any pain under control from now, won't harm.
Things don't often get worse or deteriorate apart from pain flares which will usually die down to base line pain in time.
I would introduce any medication prescribed separately to get a good handle on what works for you as everyone is different.
Many manage with say a combo of gabapentin or pregabalin and cymbalta or amitriptyline. . . . see home pages. It is all a bit of an experiment to see what may suit best. If and when you find a good medication (single or combination) I would still advise not sicking blindly with it for ever tho'. Once you know that it works and have had some good effect for a good while try tapering it down again. (never simply stop! and do take Dr's advice of course) You may find that after a while things have calmed down on their own with the help of other conservative treatments such a physio (PT) and pain/brain cognitive treatments. That last bit is just an aside btw
Gone a bit off track there 
Not sitting as much as possible and other lifestyle changes definitely help. Avoid things that make the problem more noticeable, often a difficult option so at least try and 'pace' things. The home pages also have good info and tips.
There are tons of books and internet info on cognitive pain management for self help and many pain management centres do address the pain problem cognitively too.
Physiotherapy can be an excellent strategy, especially if the problem involves a tight pelvic floor (sometimes piriformis muscle too) Do choose someone who is PN aware. There is a list on the home pages again.
The hope would be that everything will calm down with this multidisciplinary approach and especially if it is simply a question for releasing tight muscles (myofascial release) through physio, GREAT!
There are other conservative treatments to be pursued if this doesn't help but that is definitely a good place to start.
Glad you have found us here.
take care,
Helen
As you say there must be some nerve issue with the symptoms you describe and all of the usual tests being clear. My advice would be to start with a multidisciplinary approach, medication, lifestyle modifications, physiotherapy and cognitive and or mindfulness training.
A combo of an depressant and anti seizure drug can be a powerful tool to get things under control, especially good at halting any escalating pain that may be due to a central sensitisation (CS) . This CS problem doesn't always happen but as a precaution, getting any pain under control from now, won't harm.
Things don't often get worse or deteriorate apart from pain flares which will usually die down to base line pain in time.
I would introduce any medication prescribed separately to get a good handle on what works for you as everyone is different.
Many manage with say a combo of gabapentin or pregabalin and cymbalta or amitriptyline. . . . see home pages. It is all a bit of an experiment to see what may suit best. If and when you find a good medication (single or combination) I would still advise not sicking blindly with it for ever tho'. Once you know that it works and have had some good effect for a good while try tapering it down again. (never simply stop! and do take Dr's advice of course) You may find that after a while things have calmed down on their own with the help of other conservative treatments such a physio (PT) and pain/brain cognitive treatments. That last bit is just an aside btw
Gone a bit off track there Not sitting as much as possible and other lifestyle changes definitely help. Avoid things that make the problem more noticeable, often a difficult option so at least try and 'pace' things. The home pages also have good info and tips.
There are tons of books and internet info on cognitive pain management for self help and many pain management centres do address the pain problem cognitively too.
Physiotherapy can be an excellent strategy, especially if the problem involves a tight pelvic floor (sometimes piriformis muscle too) Do choose someone who is PN aware. There is a list on the home pages again.
The hope would be that everything will calm down with this multidisciplinary approach and especially if it is simply a question for releasing tight muscles (myofascial release) through physio, GREAT!
There are other conservative treatments to be pursued if this doesn't help but that is definitely a good place to start.
Glad you have found us here.
take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Newbie - PNE what would you suggest burning/cold sensati
Hi Helen,
Thank you for the response. How are you doing with your pain? I don't want to take antidepressants (I don't even think my doctors will give them to me because they told me I'm fine from testing) but will try supplements that are similar to antidepressants without bad side effects.
http://www.doctoroz.com/media/print/11147
Also, I heard nerves heal on their own? And for those who have been successful with antidepressants, do they have to take the meds forever? Or does the nerve symptoms(burning/cold sensation) fade away in time? From reading it seems like surgery is the only way to cure it, but I don't think I want to take the chance of having worse symptoms because I'm only between 1-3 on the pudendal pain scale. Thank you!
Thank you for the response. How are you doing with your pain? I don't want to take antidepressants (I don't even think my doctors will give them to me because they told me I'm fine from testing) but will try supplements that are similar to antidepressants without bad side effects.
http://www.doctoroz.com/media/print/11147
Also, I heard nerves heal on their own? And for those who have been successful with antidepressants, do they have to take the meds forever? Or does the nerve symptoms(burning/cold sensation) fade away in time? From reading it seems like surgery is the only way to cure it, but I don't think I want to take the chance of having worse symptoms because I'm only between 1-3 on the pudendal pain scale. Thank you!
Re: Newbie - PNE what would you suggest burning/cold sensati
Hi Allen,
Peripheral nerves can heal depending on whether there is continued irritation. Do you know what started your problems? Have you tried any physical therapy yet?
Violet
Peripheral nerves can heal depending on whether there is continued irritation. Do you know what started your problems? Have you tried any physical therapy yet?
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Newbie - PNE what would you suggest burning/cold sensati
Yes a peripheral damaged nerve can heal, which is always good to know. I read Dr Dellon who said that one of the problems with amputees is the phantom pain syndrome that is well reported. He puts it down somewhat to the nerve endings wanting to grow back and connect again (this is my own version of what he probably says so much better ) He therefore tries to tuck any nerve ends into a muscle which apparently helps and stops the pain.
All clever stuff, and there is some hope that people with shoulder damage and some paralysis (and eventually even spinal damage?) can be helped once a substance can be found that will work as an agent between severed, torn nerves to allow them to grow back and reconnect. I read somewhere that they are experimenting with some host nasal cells being tried as a possible nerve growth 'bridge'. Anyway just proves the fact that nerves can grow and repair.
With a problem like PN it is more an issue of trying to determine how the problem may have occurred, possibly why Violet has asked that question in your case.
if there is an actual entrapment (only usual if there has been a trauma onset like surgery, fall etc) there is no point in waiting ad infinitum for something that is never going to happen because the nerve needs physically freeing from clamped ligaments, scar tissue or whatever.
Having physiotherapy can help determine this as if conservative treatments like this work there is a likely hood that the problem is tight muscles (which are then less tight after physio) rather than an actual entrapment.
As for any medication I do think that a tapering down and stopping should be tried. Often the job has been done to a good extent, after a certain time taking meds, but then the medication can always be taken again if a cessation doesn't suit. How else will anyone ever know if they are still needed or not. So surgery is not the only option and not needed if tight muscles can be relaxed with myofascial release firstly, then the options of acupuncture, botox or nerve block injection for instance.
Time, trying treatments and seeing how effective the outcome and history of how the problem occurred if determinable will help the PN'er or doctor decide if the problem is PN or PNE.
Good luck,
Helen
) He therefore tries to tuck any nerve ends into a muscle which apparently helps and stops the pain. All clever stuff, and there is some hope that people with shoulder damage and some paralysis (and eventually even spinal damage?) can be helped once a substance can be found that will work as an agent between severed, torn nerves to allow them to grow back and reconnect. I read somewhere that they are experimenting with some host nasal cells being tried as a possible nerve growth 'bridge'. Anyway just proves the fact that nerves can grow and repair.
With a problem like PN it is more an issue of trying to determine how the problem may have occurred, possibly why Violet has asked that question in your case.
if there is an actual entrapment (only usual if there has been a trauma onset like surgery, fall etc) there is no point in waiting ad infinitum for something that is never going to happen because the nerve needs physically freeing from clamped ligaments, scar tissue or whatever.
Having physiotherapy can help determine this as if conservative treatments like this work there is a likely hood that the problem is tight muscles (which are then less tight after physio) rather than an actual entrapment.
As for any medication I do think that a tapering down and stopping should be tried. Often the job has been done to a good extent, after a certain time taking meds, but then the medication can always be taken again if a cessation doesn't suit. How else will anyone ever know if they are still needed or not. So surgery is not the only option and not needed if tight muscles can be relaxed with myofascial release firstly, then the options of acupuncture, botox or nerve block injection for instance.
Time, trying treatments and seeing how effective the outcome and history of how the problem occurred if determinable will help the PN'er or doctor decide if the problem is PN or PNE.
Good luck,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.