Broken leg with nerve pain - any advice?

[Jexa]

About six weeks ago a drunk/drugged driver (who was out on parole, thank you justice system) came across the median and hit me almost head on. I’m very lucky that my only injury was a broken leg, but it’s a pretty nasty break. Open compound fracture of both tibia and fibula, plus a pilon fracture/crushed base of the tibia. Non weight bearing for about 4 months, doc is projecting a total of a year before I’m completely back into things.

I’m almost a month out from the most recent (and hopefully last) surgery, and the bone pain is pretty much under control. What’s not under control is the damn nerve pain. It’s not horribly painful, but it has NEVER turned off. Not. Once. I’ve had about 4 nights total that I just flat out didn’t sleep, even for a minute. And there have been several more where I got very poor sleep just because that nerve pain never shuts off and keeps me awake.

No sleep aids/drugs do anything because they can’t overcome the nerve pain. I’m on gabapentin for nerve pain now, and it seems like taking the max dose right before bed helps enough I can usually get some sleep. But unfortunately I’m one of those people that seems to build a tolerance to drugs rapidly, and I’m already at the max dose. I’m pretty worried where to go from here - not sleeping screws with my mind badly, and it’s just a downward spiral.

So, nerve pain sufferers, any advice? Or just reassurance that it will fade? I know it will, but I don’t like thinking about how long that might take. I’m supposedly going to see a pain specialist at some point, anything I should talk to them about? I’ve had some weird nerve issues before with reconstructive surgery (on the same ankle, actually) but it was not constant nor painful. I’m told nerve pain is common with this type of injury, and I know nerves are tricky, but there’s got to be something more I can do or I’m really going to lose it.

[Laurierace]

The time released version of gabapentin worked well for me when I had nerve pain. It is called gralise I believe.

[Where_sMyWhite]

I have nerve pain (not from your source).

Maybe try pregabalin (Lyrica) rather than gabapentin. (FWIW, on the Lyrica page if you meet the conditions, you can download a card that allows you to get it at a reasonable price).

I also know that when I was early in my nerve pain I took Roxicodone. Yes, it is a narcotic with associated risks. I think I took usually 2.5mg (which is a very low dose during the day if needed and 5mg if I needed to get to sleep). Would this help you? I’d have a chat with your Dr and get their thoughts. I know it helped me get to sleep which seemed to break the pain/noise cycle at least for that day. I was very careful to watch how much I took and over time was able to use it less and less frequently. YMMV.

[beaujolais]

Oh dear, you poor thing! Big soft hugs! Thank goodness it wasn’t worse, as you said.

Nerves regenerate slowly, at the rate of about an inch a month, I believe. As such, improvement is - s . l . o . w. but, that still offers hope for your improvement. Some people believe in Methyl B12 for nerve pain & regeneration. I took it for about a year. I’m not sure if it helped but I felt better knowing I was doing everything I thought I could.

Maybe see what your Doctor thinks about a TENS unit? Also, maybe ask about topical lidocaine patches.

I worked with a pain psychologist for about six months after I ruined my back. The biggest takeaway was “distraction”, see below.

Here are some links:

http://www.aci.health.nsw.gov.au/chronic-pain/painbytes/pain-and-mind-body-connection/how-can-distraction-be-used-to-manage-pain

http://www.spine-health.com/conditions/chronic-pain/11-chronic-pain-control-techniques

They really did work, but I needed to give it a whole hearted effort, which I was not that good at, at first. If you read or do crossword puzzles (distraction) maybe easy ones for now so it is not frustrating? I do Khan Academy for distraction, fun and a sense of progress.

Sending healing thoughts.

[Where_sMyWhite]

A quick check and these numbers are similar to what I was told…

1 mm/day in small nerves and 5 mm/day in large nerves

[Jexa]

Thanks all for the suggestions.

The leg is in a cast until September, so unfortunately inaccessible for topical treatments at the moment. Hopefully by the time the cast is off, the nerve pain will be gone or at least severely diminished. We’ll see.

I have another CT scan tomorrow to see if any of the hardware, particularly the screws in the bottom part of the tibia, are causing the neuropathy on the bottom of my foot and my inability to curl my toes. It’s possible if they are that fixing it will reduce some of the nerve pain as well, but I’m very hopeful they don’t find anything since that would mean yet another surgery. Instead, the surgeon thinks (and I with all of my medical degrees from google university agree) that when the tibia fractured and tore through the inside of my leg and popped out, it damaged the tibial nerve that runs down the inside of the leg. Of course that would mean that only time will heal it, something I’m not good at.

I’ll continue to talk to him about different medications and see what he thinks, but I get the impression he’s unlikely to do much…it took several weeks and over 48 continuous hours of not a second of sleep, despite being on the max dose of morphine and something else dangerous, before he prescribed the gabapentin. I’ll keep speaking up, though.

Interesting articles about distraction, thank you. I’ve definitely noticed that when I’m engaged and happy doing something, be it reading a good book, talking with friends, at the barn, etc, that not only does the nerve pain not bother me at the time, but it stays low afterwards as well. Conversely if I don’t sleep well and start concentrating on the pain, I just make myself more miserable and it’s a downward spiral.

[MidlifeCrisis]

Medical marijuana

[Where_sMyWhite]

Ouch, morphine isn’t working

IIRC, Roxi is an opiate as well. I wouldn’t take it lightly (I didn’t) but I also know, for me, opiates do what they are supposed to do well. I was terrified of the addiction aspect so make sure, on my own, that I didn’t get carried away and took them only when I really needed something to help get to sleep.

You might also want to look for a pain management specialist. I know my orthopedic surgeon would prescribe pain meds for only a short period of time and then bowed out of the picture. I was fortunate that my PCP was willing to work with me and we got through most of the post-surgical “crap” together. I suspect I’ll be on pregabapentin for the rest of my life At least I haven’t had an opiate in ages.

My heart goes out to what you are going through…

[beaujolais]

“The leg is in a cast until September, so unfortunately inaccessible for topical treatments at the moment.”

Oops, that’s right, of course, sorry. What was I thinking, eeeesh, eh? I wonder if the cast precludes a TENS unit working - if placed just above the cast would it still be able to work (interrupt the pain signals to the brain)? I’m not sure but perhaps.

“I get the impression he’s unlikely to do much…it took several weeks and over 48 continuous hours of not a second of sleep, despite being on the max dose of morphine and something else dangerous, before he prescribed the gabapentin.”

So many of them are not good with helping patients with pain control and it’s just terrible! I do wonder why they are not quicker to prescribe gabapentin(neurontin) sometimes.

“I’ll keep speaking up, though.”

ABSOLUTELY!!!

[Kyrabee]

I agree…get a consult for a pain specialist. With all the recent attention to opiods and overdoses, a lot of docs are getting shy about prescribing pain meds. BUT…you need them and need someone that understands the type of pain you are having. I would just skip the surgeon and move to someone that can help you. You don’t want it to turn into chronic pain…no:no:.

Jingles.
Susan

[TandyTX]

Wow. I’m sorry.
Here’s another vote for pain management specialist. They really are worth going to.
Nerve pain is very controlling.
I have permanent nerve pain, although spinal in origin.
Gabapentin is definitely worth a go. It takes a few days for full effect, so hang in there. Take it religiously and don’t miss a dose. There is a wide range for effect, so if your current mg dose doesn’t help, get on the horn to the doc to see if you can up it.
At 8 hours, I could feel the decline so be aware and chart comfort levels.
Careful with Tens unit. It’s hit or miss. Used too soon after injury it can really piss off nerves.
Just Owe. You take care.

[Where_sMyWhite]

[QUOTE=Kyrabee;8723904]
I agree…get a consult for a pain specialist. With all the recent attention to opiods and overdoses, a lot of docs are getting shy about prescribing pain meds.[/QUOTE]

This yes. One of the reasons I think that my surgeon had a form I had to sign that if I needed ongoing pain meds, he would not be the prescriber. And, FWIW, he’s a surgeon, not a pain management specialist.

What I have yet to be able to find out (and yes, keep forgetting to ask my PCP) is what is the diff between gabapentin and pregabalin. The only time I did ask, shortly after surgery was that pregabalin worked in a different area of the neural system than gabapentin. I was on gabapentin before my surgery and pregabalin after… and I suspect I may be on it for the rest of my life as well

[Jexa]

[QUOTE=MidlifeCrisis;8723785]
Medical marijuana[/QUOTE]

Not if I want to keep my job!

[Jexa]

[QUOTE=Where’sMyWhite;8723820]

IIRC, Roxi is an opiate as well. I wouldn’t take it lightly (I didn’t) but I also know, for me, opiates do what they are supposed to do well. I was terrified of the addiction aspect so make sure, on my own, that I didn’t get carried away and took them only when I really needed something to help get to sleep.[/QUOTE]

I’ll talk to him about that as well. I’ve always heard, though I have no idea if it’s true or not, that if you’re taking opiates for for pain in the correct dosages that it’s nearly impossible to become addicted. The supposed logic being that since all they’re doing in that case is reducing pain, you’re not getting the “high” that causes you to want more and more. Again, could be baloney, but I would happily trade in my oxycodone for something that actually worked on my nerve pain.

[Laurierace]

That is the bad thing about nerve pain, narcotics don’t touch it. As far as getting addicted goes, it generally isn’t so much that you get high from it but that you become tolerant to it and need to take more and more to get the same effect.

[Jexa]

I’ve been taking the gabapentin for a month, and at first low doses seemed to work well. For the first time since the surgery I was sleeping well. But since then I’ve had to continually up the dose and it seems less and less effective. It’s very possible that one of the reasons that happened is that early after the surgery the bone pain was so severe it basically overrode the nerve pain signals in my brain. Now that the bone pain is almost gone, the nerve pain can take front and center. Yay.

The orthapedic clinic is working on setting up the referral to the pain management clinic, but it’s taking several weeks for some reason. I really like the surgeon and his staff. He’s got impressive credentials, lower leg/ankle surgeries are his expertise, and he’s very straightforward with me. I just hate trying to get any answers/drugs out of them because they’re so slow to respond, and the response is frequently a polite version of “sucks for you, but we’re not changing anything”.

When I finally see the pain specialist I’ll ask about the TENS unit and using it above the cast. I actually have one, but I think I’ll hold off in case they say it’ll make it worse.

I see the surgeon again next Tuesday to get the rest of the stitches and staples out (the wound where the bone came out looks like it FINALLY healed, whoo-hoo!), and he and I will have a long talk about the nerve pain. I suspect though that he’s going to say talk to the pain management specialist about it.

I really wish we knew more about nerves and how to speed their healing! Thanks everyone for the sympathy and advice. This has really not been a fun journey, but I know I am so, so lucky this is the only injury I have to deal with.

[Jexa]

[QUOTE=Laurierace;8726078]
That is the bad thing about nerve pain, narcotics don’t touch it. As far as getting addicted goes, it generally isn’t so much that you get high from it but that you become tolerant to it and need to take more and more to get the same effect.[/QUOTE]

Exactly, nothing but the gabapentin affected the nerve pain. That’s why I was so mad when they kept increasing the morphine to the point they had to check on me every 5 minutes to make sure I was still breathing and I kept telling them it wasn’t going to do anything for the type of pain I had. Their response was to give me a shot in the butt of some other type of narcotic that felt like an friggin’ anthrax vaccination, and surprise surprise did nothing to help.

As far as addiction, I’ve always worried that I was a prime candidate because I seem to so quickly build a tolerance to pain medications. But my response has always been to just give up on the drug and try something else, then come back to the low dose a few days later when my tolerance has worn off if I still need it. I’m lucky that despite my numerous sports injuries/reconstructive surgeries over the years, I’ve never had really uncontrollable pain for a long time. Until now, that is, but the narcotics don’t help it.

[Where_sMyWhite]

[QUOTE=Laurierace;8726078]
That is the bad thing about nerve pain, narcotics don’t touch it. As far as getting addicted goes, it generally isn’t so much that you get high from it but that you become tolerant to it and need to take more and more to get the same effect.[/QUOTE]

I would agree that I don’t think the Roxi addressed the actual nerve pain but it did let me get to sleep and for me, after sleeping all night, the nerve pain was reduced. (i.e., it makes me pretty sleepy and yes, narcotics maybe don’t help with the nerve pain but they are good pain meds).

@Jexa;8726108

I really wish we knew more about nerves and how to speed their healing! Thanks everyone for the sympathy and advice. This has really not been a fun journey, but I know I am so, so lucky this is the only injury I have to deal with.

I am here with you totally on understand more about nerves and how they work and “heal” and/or “recover” from traumas…

The pain clinic I think is a good place to go. Surgeons are good at what they do (cutting ) but that is the primary focus of what they learn and practice. Pain other than meds dealing with pain immediately following surgery, I don’t think they learn much about. That’s when a healthcare professional who has the experience and training in pain treatment needs to step in.

You have my sympathies for sure. I think even now I have residual “pain” from compression but fortunately it is rarely enough to keep me from sleeping and when it is mildly annoying, it is much better the next morning.

[Laurierace]

I really do think you should look into the gralise if the gabapentin is helping somewhat. I was very close to going to the ER before the gralise kicked in even though I was taking 900mgs of gabapentin 3 times per day. It was like a miracle.

[Jexa]

[QUOTE=Laurierace;8726386]
I really do think you should look into the gralise if the gabapentin is helping somewhat. I was very close to going to the ER before the gralise kicked in even though I was taking 900mgs of gabapentin 3 times per day. It was like a miracle.[/QUOTE]

I appreciate the advice, I will definitely bring it up with him at my next appointment.