I was diagnosed back in 2012 with pudendal nerve related neuropathic pain. Luckily, Gabapentin medication helps control the symptoms for the majority of the time. But it still doesn't work for 100% of it.
This hasn't bothered me too much for some time until more recently. It seems lately that I've had a slight increase in pain occurrence frequency. Not sure if I'm just imagining things, but am a bit concerned that it could be a sign of my medication dosage no longer being as effective as it was at one stage.
I'm going to be keeping an eye on things for a bit longer, and if I notice more of what I'm worried about, definitely plan a GP visit. In the meantime though, I wondered if there was anybody else here who has intermittent neuropathic pain symptoms who has discovered any non medication pain management approach which has been helpful for them in managing their pain symptoms?
Many thanks in advance for reading.
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Nightowl9910
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Hi I have chronic nerve damage pain. I’ve tried so many things. I have been on Gaberpentine right up to 2,500mg a day but it was too much I felt spaced out, now taking 1500mg a day but it doesn’t seem to be working very well. I just don’t know what else to try. Good luck sorry I can’t help Chrissy
I'm really sorry to hear that Christine. Can only too well imagine that must be horrendously awful. Might it be worth speaking to a different GP or even asking one to refer you to a pain clinic where a pain specialist might be able to help?
Hi I have actually just spoken to another one whom has suggested that I would be an excellent candidate for a spinal cord stimulator implant to be fitted. Obviously I am worried about this incase anything should go wrong like it did. So that is what I’m considering at the moment. I hope you get yours sorted also, thanks Chrissy
Hey Christine. I can understand being worried. I know I seriously would be. Can this GP give you any further info on the risk involved? Wishing you the best of luck and thanks for that.
I am on the sister drug, pregabalin. Was on the max dose and even slightly over. However there would be days when it did not help. I am sure the body gets used to it like it does to illegal drugs and then you need more to stop the pain signals. So in the end I could not stand this any more as the high dosage together with the other drug I take was turning me into a zombie while still having bad days. So I decided to wean myself off them. I have more than halved the dose which was very hard. I am determined to get rid of it altogether. I am taking cbd oil at night to help me somewhat. It does not take away the pain but makes it less intense. Magnesium bath salts do help a little too.
Thanks for posting Emma2017. I'd forgotten about Lyrica. I guess that's a possible alternative option if a Gabapentin increase doesn't help. I'll be sure to bear this in mind. I'll have to look into cbd oil.
I found an intensive pain management course helped me a lot. I know the pandemic is holding things back but if you haven't already been on one of these things I would suggest it to be well worth it. I don't mean a privately organised one- a mean an NHS one at a hospital. Over 20 years ago I attended the Walton Centre on Merseyside which is part of the Aintree Hospital Trust in Liverpool. It was 4 weeks long, 5 days per week....a group course with so many people there who understood exactly the impact pain was having on every aspect of your life. This approach includes psychological understanding of pain and how the mind can have a control but also guided physiotherapy and lots of talks from professional consultants who were experts within the field of chronic pain....and guidance about "pacing". Also, I had to get up 4 mornings of each week to get me there on time which was, in retrospect, a good thing.One of the aims may be to reduce or, at least, make people less dependent upon medication...or even to eliminate it...so a different approach to what you get in a GP surgery where they might wish to push the pain killers on you fast and get you out.I found it very useful and very reassuring. I am not sure if this was to do with the people I met...but it left me with hope, not angst. I continued with the physio exercises and everything else and even went back to do some work on some days of the week. I didn't get out of pain immediately...but in time it diminished so that when I did get the odd painful day it was less scary. I might add that I was younger then - only in my 40s....and the reason I am looking into this site is because I have been suffering again with a new pain in a slightly different place - although I assume it is all part of the same as before dysfunction in my body. However, after a wait I am "in" with the same NHS centre again....although not on any programme (yet), just seeing some psychologists and physiotherapists individually...and if I do get on a programme I will only be eligible for a "shortened version" because of my participation before. I do believe that the mind is an important controller of any pain and that the human body wants/needs to move. While I wait and try to maintain hopefulness I hang on to these two beliefs. I wish you lick and hope.
I agree in that our mind can help us a lot in coping /understanding our pain however ,as we all know ,pain is a hard taskmaster and what works one week may not work the next . This in itself is tiring so we end up in nasty circle. But I would recommend everyone tries everything ! CBT has helped me at times, meditation, exercise, just telling pain to go away (a bit more rudely than that lol) i know getting up and getting doing is probably my best alai , yes it can be hard ,very hard and doesn't always work but hey oh 😄
Hi there Purplehaze. I really appreciate your taking the time to type all that to try to help:
"I found an intensive pain management course helped me a lot."
I tried one of those back around 2013 time. I had nerve blocks done which didn't seem to really help. I was given information on CBT pain management techniques and got a book on this too. I can see how the ideas for somebody with predictable pain patterns could work effectively, but unfortunately my case isn't that simple. It's a pudendal nerve related problem. Pain attacks randomly happen at different times (doesn't matter how inactive or active I am/whether I'm sitting or standing or moving about etc) and intensity and sensation types vary. Pacing wouldn't make a difference. I've also found it a fair bit easier said than done to think about how my pain affects me differently when it happens at any more than a mild level (although I guess it can't hurt to give it another try).
Still, many thanks for trying to help anyway and for the kind thoughts. Really sorry to hear about the new problem that's reared its head. Hoping that things go well for you regarding getting more help - wishing you all the best with that too and hope.
Hello Nightowl. I never mentioned the type of pain I was experiencing when I got to go on that Pain Management Course at the Walton Centre Liverpool about 20 years ago. No-one could give me a name for what I suffered. I had no diagnosis and I felt like I was going mad. My pain was all in the groin area, mainly one side. It affected my bladder to a large extent making me feel like I wanted to go when I didn't really. It was also in the vagina, one side only(the whole thing was largely one sided), my tummy and anus were also affected. I went for 2 cystoscopies, 2 laparoscopies, had many urine samples taken but nothing showed up. No-one ever mentioned that my spine might have had something to do with it which I now conclude. I was at the end of my tether when I attended that course. Different places may offer different kinds of pain management course. One of the things that the Walton Centre advocates was, and still is, to try to help people minimise the pain medications they were taking whilst recognising the need people have of anything which will help their suffering. It was about the power of your mind and the way you live your life to cope better with what you suffer. I just wish I could get on the course again. The pain I suffer now is most definitely related but now also affects my foot and leg so whereas walking used to be something which helped me cope with the groin pain, I now have my foot and leg as the enemies which stop me doing very much of that. My pain at the moment is also very, very variable. It has a slightly different emphasis every single day and even within each day but never leaves me and is intense often when I am on my feet....although the pain in the buttock is often worse for sitting too long! I am convinced that both my non diagnosis and the dismissal I have encountered from many medical professionals have led me to analyse too much, to watch the pain too much and to look for clues within myself (and the internet!) and this has in turn amplified the pain I feel. I wish you the best and just want to tell you to keep an open mind and keep working on improving as much of your health as you are able...and essentially to be kind to yourself but in sensible control. Tomorrow is another day. I really hope your tomorrow is better.
"No-one could give me a name for what I suffered. I had no diagnosis and I felt like I was going mad. My pain was all in the groin area, mainly one side. It affected my bladder to a large extent making me feel like I wanted to go when I didn't really. It was also in the vagina, one side only(the whole thing was largely one sided), my tummy and anus were also affected. I went for 2 cystoscopies, 2 laparoscopies, had many urine samples taken but nothing showed up. No-one ever mentioned that my spine might have had something to do with it which I now conclude."
Very sorry to hear all that! Outside of the term "nerve pain" I had no diagnosis for what I was going through either. Luckily my condition didn't affect my bladder, although I was getting shooting and stabbing pains through my pubic/genital/clitoris areas.
"I was at the end of my tether when I attended that course. Different places may offer different kinds of pain management course. One of the things that the Walton Centre advocates was, and still is, to try to help people minimise the pain medications they were taking whilst recognising the need people have of anything which will help their suffering. It was about the power of your mind and the way you live your life to cope better with what you suffer. I just wish I could get on the course again."
Appreciating what you're saying Purple Haze. The pain clinic service I used back in 2013, at the University College of London, offered just this same kind of thing. It was all largely CBT based. I was given information handouts and purchased a book at the time too "Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain." So far as I get the idea, we're both talking about the same sort of thing!
"The pain I suffer now is most definitely related but now also affects my foot and leg so whereas walking used to be something which helped me cope with the groin pain, I now have my foot and leg as the enemies which stop me doing very much of that. My pain at the moment is also very, very variable. It has a slightly different emphasis every single day and even within each day but never leaves me and is intense often when I am on my feet....although the pain in the buttock is often worse for sitting too long!"
Don't get me wrong, I believe you on your experience regarding how your condition affects you!
"I am convinced that both my non diagnosis and the dismissal I have encountered from many medical professionals have led me to analyse too much, to watch the pain too much and to look for clues within myself (and the internet!) and this has in turn amplified the pain I feel. I wish you the best and just want to tell you to keep an open mind and keep working on improving as much of your health as you are able...and essentially to be kind to yourself but in sensible control. Tomorrow is another day. I really hope your tomorrow is better."
I certainly believe you're best qualified to know what's what with your situation! That said though, I am inclined to think how helpful or not any one specific treatment approach is for any one person is something that's going to vary amongst different individuals to at least some extent.
I will definitely review what's covered in my self help book through regarding things like thought challenging and attentional techniques and give them a further whirl though. At the least it can't hurt! Thanks again for your posts and wishing you all the best.
You have my empathy, my pn is awful , it used to flare and settle ,but these last few months it's constant 24/7..any position . So I am seeking a referral back to hospital to reconsider decompression again 🤔 I don't really want an op but between this and back leg pain , I'm at that point. I find none of my meds help ,so giving them up. Bath is best but sadly only lasts while hot and yes it's a struggle getting in and out ! I wish you well and say try whatever you can
Hi thenunn. Many thanks for your kind thoughts. Your situation sounds a fair bit worse than mine just now. I'm really sorry to hear that. I hope you don't mind my asking, what's decompression? I hear you on the meds. If they're doing nothing to help there's no point in taking them. I'm glad that taking hot baths help you at least (can't say they have me). Might something like a nerve block possibly help? Or is this something you've already tried? (didn't work for me but we're all different!).
Hi Nightowl hope youre not feeling too bad ,sorry for delay ,just had my gallbladder removed .Lumbar Decompression Surgery , is normal done keyhole these days ,I believe, its where they shave bone/clean out an area ,it basically takes pressuare off nerves that are being affected ,thus reducing /getting rid of pain. I believe in the UK there is a 70-85% success rate. Hopefully it relieves symptoms, if not they stay the same and if not sadly things could get worse. Also it does not last forever , Which is why I have deliberated for so long . Im not the best patient at recovery (lol) and i'm loathed to go through with something like this if it doesnt last forever ; for no benefit or even worse ,it makes things worse ! There is lots of info on the web about the procedure . Yes already had nerve blocks some years ago and sadly for me they were no help .
Hope its sunny where you are ,we're at 24 and blue skies take care x
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