Health Organization for Pudendal Education

For the first time a GP spoke to me about medication. Instinctively I am resistant to the idea for well known reasons (such as side effects, risk of dependence etc). My pain is not so acute that I cannot function, although I am beginning to describe a lot of my days as akin to a ‘Chinese torture’ (apologies to the Chinese). I have looked several times at the pain scale, and I cannot easily place myself. This is in part because before my discomfort becomes unbearable I change activity and spend some time on my feet or lie down. However, sooner or later I have to sit again (with cushion, of course). It gets harder as the day goes on. My pain is not a sharp or burning pain, it is more like being slowly crushed from below. It reaches a point where I am literally driven from my chair. Standing is not an option, as I now have varicose vein trouble (double whammy!).

My GP mentioned some ‘neuropathic’ medications. He mentioned they used to be used for treating depression. Instinctively I thought ‘They want to treat this as psychological, sedate me, and make me go away.’ Well, I’m sure that’s not what’s intended, but I feel uneasy about the idea. I’m pretty resilient and determined to not let this problem derail my life, but it can get gruelling at times.

I’ve already read a bit on the site about medication, but am a bit confused about the sheer number of types and side effects. I was wondering what other people had found helpful (relative to my state)? I suppose once an effective medication is identified, it’s a long-term thing until at least a more effective solution can be found?

Best wishes to all,
P_M

Some of the anti-depression meds such as amitriptyline help pelvic pain --not just depression. But I know what you mean about not wanting to take them. Taking meds isn't necessarily a permanent solution if you can get to the true cause of your pain and have that treated but in the meantime it's smart to try to keep your pain levels low because high pain levels can cause permanent pain pathways in the brain/spinal cord.

I am completely off medications now and if I had one thing to do differently it might be to take more pain meds during the worst of my PNE journey.

Figuring out what works for you requires some trial and error. Some people have success with a combination of cymbalta and lyrica.

Violet

Dear Violet and Birdlife

Thank you for your views and thoughts. I shall think on it, and look into it further.

Yes, I wear compression stockings (hateful things), but they do help.

All the best
P_M

Would just like to contribute here - if you read the NICE guidelines for the treatment of neuropathic pain - here - you'll see why your doctor is suggesting amitriptyline or nortriptyline. Please be assured that the dose is very small compared to the dose used for depression, lots of people find it very helpful.

Pregabalin/Lyrica (anti-convulsant) - for me, this was what worked.

I really agree with what Violet says - if I could do one thing differently, I'd have had more meds, right from the beginning. Effective pain relief means better quality of life, after all. Right now I am not needing any meds other than when I get a flare, when I take slow release tramadol.

calluna wrote:I really agree with what Violet says - if I could do one thing differently, I'd have had more meds, right from the beginning. Effective pain relief means better quality of life, after all.

I agree with Violet and Calluna. I wish I had taken more meds at the beginning of my pain, but I am a nurse and was so reluctant to medication. My conditiion progressed rapidly and has become centralized in the nervous system, called central sensitization. I often wonder if I had began neurontin immediately if it wouldn't have progressed so aggressively. I have tried just about every med out there for chronic pain, but for me Neurontin, smal dose at bedtime of flexeril, and nucynta or tramadol (for pain flares) seems to work best for me.

Sorry to hear about your pain. Hang in there. If I might offer some advice, I would say that you should try medication to see if something works for you. There are all sorts of medications in use for neuropathic pain and one or more of them might work. Neuropathic pain medications also don't have the same types of effects as traditional painkillers do (Oxycontin, Vicodin, Percocet, Codeine, etc.), and in general I don't believe they are addictive.

Personally, I took Gabapentin and Cymbalta to manage my pain. I found Gabapentin to be the more effective of the two drugs. I also found that generally speaking it had only minor side effects (although at my highest dose it had nasty side effects on my gastrointestinal system). The Gabapentin occasionally made me want to go to sleep, but I never felt my motor function was impaired--I just wanted to lie down and close my eyes. Occasionally I would have a headache or dizziness but once I got used to the dosage I found it to be quite effective. It does not act like a sedative or an opiate, it literally just reduces/blocks pain signals such as tingling, shooting, etc. You might want to give it a shot. It is not addictive and it is inexpensive.

One thing you should know, though, is that according to my neurologist, the response curve for Gabapentin is not linear. By that I mean doubling one's daily dosage doesn't double the effect of the drug. Rather, you could find no real benefit at 1200 mg per day but at 1500 mg per day you might find it very effective.

Anyway, these are just a few of my thoughts. Hang in there.

The Gabapentin/Neurontin is helping me but I needed to go up very gradually and I stopped at 1500 in response to my pain specialist's guidance. I wasn't sure it was helping at first but I did get some anti-depressant help I did not think I needed. It felt like a cloud lifted off of me and my husband noticed the change. Then when I was hurting and thinking of taking a narcotic pain killer it was time for my Gabapentin and it lowered my pain so I did not need the painkiller. I also found that the Tramadol is a painkiller that works for this nerve pain and I can take it for flares instead of the narcotic oxycodone/percocet. Unfotunately like you I have the double whammy with chronic foot pain (bunions) and have been taking the narcotics for that pain because the other stuff doesn't touch tgat. Good luck and I hope you find something to take the edge off the pain.
Janet

Thank you all for your very helpful comments and information. I am certainly giving it some thought now.
All the best
P_M

Painful Man,

If you are able to bear the cost I would suggest a combination of Lyrica and Cymbalta to help manage your pain.

I second the suggestion of others that the sooner you manage to exert some control over your pain the likelihood that the level of meds required will be lower than if you wait.

Also, when dealing with neuropathic pain, meds in the same category i.e. SNRI antidepressants; I do pretty well with Cymbalta others have had some success with Savella or Pristiq. I think this individuality of response extends to many types of meds. I would like to hear from others if they have had a similar experience.

Do you have the capacity to get a MRI from Dr. Potter?

My MRI showed my dorsal nerves to the penis compressed by varices, fits my pain experience. My penis,I have a pinching feeling and being scrolled front to back by a powerful force. (I need to think further about how to describe this in a better way). Also electric current scrolling throw my scrotum. If I sit for too long I have pain.

I have read that there is some controversy over whether varices can actually compress or entrap nerves, especially I guess by PN surgeons. Few references to this in the literature, so who knows. But it fits the way I have pain.

Asserting yourself with your doctors. Every MD I have seen has serious gaps in their ability to understand the totality of the PN syndrome. Pain MD's may know meds, neurologists nerves. Only you can see your whole picture. I encourage you to learn everything you can about your condition. Then manage your care as best you are able.

I push hard, have been not fired by an MD yet.

Potter's MRI, objective evidence. If you can see her will enhance every aspect of your PN experience. Take care.

Rick