I haven't got time for the pain ...
August 26, 2013 4:29 PM Subscribe
I've got a herniated disc (L5-S1) that is causing excruciating pain across the top of my right foot. I've had 2 of 3 lumbar epidurals (3rd one is scheduled for Sept. 5) which, thus far, have not helped. I have a consult with an orthopedic surgeon scheduled for Sept. 11. I've got vicodin, flexeril and OTC naproxen. But these are doing far too little to alleviate the pain. My question: Any tips, ideas on how to deal with this pain for the next 2-plus weeks without going crazy. Snowflakes within ...
A little over 2 months ago, I began having pain and discomfort in my lower back (right side), right hip and calf, along with numbness in my right foot. No particular triggering injury or accident I can think of; just got achy while out on a walk. I've had minor back issues on and off since my teens, so didn't think too much of it.
Over the course of 3 days, this pain quickly went from a distraction to debilitating, resulting in me spending July 4th in the emergency room, because I could barely walk and was literally writhing in pain. I started seeing chiropractor while awaiting an appointment with a pain specialist. The chiro helped with reducing much of my lower back and hip pain. But the lower leg pain remained and the foot numbness has now turned into excruciating pain.
I had an MRI done in mid-July which showed an L5-S1 disc herniation.
Back on Aug. 7 I had an epidural injection; I had a second last week. Since then, the pain in my foot has gotten worse, to the point where today walking is a slow and agonizing process. it feels as if the inner side of my and my big toe are in a vice; I also get bursts of an almost electric, very unpleasant tingling on the top of the foot.
I can't wear a sock or a shoe; I get by with Crocs, though the one on the right foot gets kicked off once I'm indoors. The foot is extraordinarily tender to the touch (but not swollen or red). The skin feels as if I have a very nasty sunburn; ditto for the outside of my right calf. I can't stand having the foot covered by bedsheets or blankets. Too say the least, my sleep quality is terrible. It's been two months since I've had an uninterrupted night of sleep.
I've tried acupuncture, to no effect. (I feel some reduction in pain while on the table and for about an hour afterward.) I'm still seeing the chiro 2x a week, but I feel like it's mostly keeping the rest of me from falling apart.
Oh, I had been originally prescribed oxycodone, but it didn't help, and left me with anxiety and insomnia.
I don't know how some people can live with this kind of pain for months or years on end. I'd appreciate any successful strategies others have used in coping with pain.
A little over 2 months ago, I began having pain and discomfort in my lower back (right side), right hip and calf, along with numbness in my right foot. No particular triggering injury or accident I can think of; just got achy while out on a walk. I've had minor back issues on and off since my teens, so didn't think too much of it.
Over the course of 3 days, this pain quickly went from a distraction to debilitating, resulting in me spending July 4th in the emergency room, because I could barely walk and was literally writhing in pain. I started seeing chiropractor while awaiting an appointment with a pain specialist. The chiro helped with reducing much of my lower back and hip pain. But the lower leg pain remained and the foot numbness has now turned into excruciating pain.
I had an MRI done in mid-July which showed an L5-S1 disc herniation.
Back on Aug. 7 I had an epidural injection; I had a second last week. Since then, the pain in my foot has gotten worse, to the point where today walking is a slow and agonizing process. it feels as if the inner side of my and my big toe are in a vice; I also get bursts of an almost electric, very unpleasant tingling on the top of the foot.
I can't wear a sock or a shoe; I get by with Crocs, though the one on the right foot gets kicked off once I'm indoors. The foot is extraordinarily tender to the touch (but not swollen or red). The skin feels as if I have a very nasty sunburn; ditto for the outside of my right calf. I can't stand having the foot covered by bedsheets or blankets. Too say the least, my sleep quality is terrible. It's been two months since I've had an uninterrupted night of sleep.
I've tried acupuncture, to no effect. (I feel some reduction in pain while on the table and for about an hour afterward.) I'm still seeing the chiro 2x a week, but I feel like it's mostly keeping the rest of me from falling apart.
Oh, I had been originally prescribed oxycodone, but it didn't help, and left me with anxiety and insomnia.
I don't know how some people can live with this kind of pain for months or years on end. I'd appreciate any successful strategies others have used in coping with pain.
Are you working with a physical therapist to be sure you have the right equipment? If you use like a mobility aide such as a scooter, would that help?
Anecdotally: doctors I trust have told me opiates are no good for nerve pain. Do you have medical marijuana where you are?
posted by angrycat at 5:13 PM on August 26, 2013 [1 favorite]
Anecdotally: doctors I trust have told me opiates are no good for nerve pain. Do you have medical marijuana where you are?
posted by angrycat at 5:13 PM on August 26, 2013 [1 favorite]
I had/have an L4/L5; are there postures which reduce the amount of pain that you experience? For example, does lying down in the fetal position help? 'Good posture'; straightening the spine? Strengthening my back muscles helped me.
I've heard people swear by Mackenzie Exercises.
posted by Comrade_robot at 5:17 PM on August 26, 2013 [1 favorite]
I've heard people swear by Mackenzie Exercises.
posted by Comrade_robot at 5:17 PM on August 26, 2013 [1 favorite]
Contact the ortho surgeon and make sure he or she knows how much pain you are in. Triage for a consult and/or surgery is often based on the letter of referral written by your GP or family doc; often these letters are inadequate.
I worked for a spine surgeon who often reported seeing patients who had been waiting for a consult for weeks or months when, had the surgeon known what was really happening, these patients would have been bumped to the front of the line. However what the surgeon does not know cannot be addressed.
God luck and sorry you're going through this.
posted by lulu68 at 6:09 PM on August 26, 2013 [2 favorites]
I worked for a spine surgeon who often reported seeing patients who had been waiting for a consult for weeks or months when, had the surgeon known what was really happening, these patients would have been bumped to the front of the line. However what the surgeon does not know cannot be addressed.
God luck and sorry you're going through this.
posted by lulu68 at 6:09 PM on August 26, 2013 [2 favorites]
I've posted about my back surgery before, but I really do know your pain. I was attempting to tough out my last quarter of university [my surgeon thought I was crazy and wouldn't make it and he was right. I made it to 2 weeks from graduation and was totally insane from the pain by then].
So, my advice is bit lame, because nothing really helps....but,
-none of the pain meds are going to help much with the nerve pain, so you're looking for anything that makes you care about it less. I found that the narcotics were helpful in that regard, and recommend definitely taking your full, safe, maximum dose for sleeping.
-medical marijuana, if that's as option for you
-about 2x a week, when I'd just about lost my mind from the pain, I'd go to the emergency room where they'd happily give me a shot of morphine in my ass. Which made me puke. But also made the pain so much better for several hours and gave me that several hours to sleep or at least refill my reserves. (I'd note that I went to UCSB and got these shots at Cottage Hospital which was notorious for it's heavy-med treatment of Michael Jackson. I don't know how easy it is to get shots of morphine from a RESPONSIBLE hospital.
-Have you tried toradol injections? It's an NSAID and non-narcotic. I also found it less than worthless, but others find it helpful.
-taping. It sounds whackadoodle, but it's what Kaiser prescribed to my mom when she had sciatica. Here's a link to the idea. You use leukotape, not kinesio-tape. You need a friend to tape you.
-that same ER prescribed me soma, which is WAY stronger than flexeril [turns my tongue orange and gives me dry mouth and...that's it], but my neuro wouldn't re-prescibe it for me [I think that's mostly bc I was in college and it has a street value]. Once again, I found the pain-relief negligible, but it sure made me care less.
-you mention walking is hard, so I don't know how helpful this is, but sitting is the worst thing you can do. Lay down or stand up.
-the first 2-3 minutes of walking after sitting was crying, hysterical hell. It got soooooo much better after that, though.
-ice packs. I don't know if it actually helped, but I'm one of those "ice heals everything" people, so always had one. Might have just been extra/different stimulus, but whatever works. I also used a heating pad in the same manner and think it sometimes helped for the same reason.
-deep breathing and meditation, etc. It is really painful, I know. And weird painful, right? How can something numb and tingly hurt so god damn much? Deep, regular breathing really does help, though.
-screaming. it's 2 weeks. Yell, be angry, exhaust yourself from screaming about your horrible pain.
As a final uplifting note, I'm just an anecdote , but my surgery was supersuccessful. The surgery I had (a microdiskectomy) was minimally invasive in 2002. I'm pretty sure its even less so now. Immediately upon waking from anesthesia, just as the surgeon promised, I had relief. I was sore from the hole in my back, but it was sweet sweet nerve pain relief. Instant.
And while there's nice debates about longitudinal studies and whether doing nothing is just as successful, once you've gotten to the losing muscle control stuff, the studies become clearer in favor of cutting. It was 10 days laying down or standing [no sitting!] after surgery and I was done. Well, plus longer term phys therapy to strengthen all the muscles around my disks.
11 years later (if you read the link to my older comment, you'll now know I can't do simple math), I haven't had that kind of pain in probably 8 years. And I run long distances, lift heavy weights and wear high heels. So, there is totally hope. Totally. If you want to vent at me about it, memail me. I'm happy (Well, no, but you know) to commiserate. Good luck! Wow, that got long.
posted by atomicstone at 6:37 PM on August 26, 2013 [1 favorite]
So, my advice is bit lame, because nothing really helps....but,
-none of the pain meds are going to help much with the nerve pain, so you're looking for anything that makes you care about it less. I found that the narcotics were helpful in that regard, and recommend definitely taking your full, safe, maximum dose for sleeping.
-medical marijuana, if that's as option for you
-about 2x a week, when I'd just about lost my mind from the pain, I'd go to the emergency room where they'd happily give me a shot of morphine in my ass. Which made me puke. But also made the pain so much better for several hours and gave me that several hours to sleep or at least refill my reserves. (I'd note that I went to UCSB and got these shots at Cottage Hospital which was notorious for it's heavy-med treatment of Michael Jackson. I don't know how easy it is to get shots of morphine from a RESPONSIBLE hospital.
-Have you tried toradol injections? It's an NSAID and non-narcotic. I also found it less than worthless, but others find it helpful.
-taping. It sounds whackadoodle, but it's what Kaiser prescribed to my mom when she had sciatica. Here's a link to the idea. You use leukotape, not kinesio-tape. You need a friend to tape you.
-that same ER prescribed me soma, which is WAY stronger than flexeril [turns my tongue orange and gives me dry mouth and...that's it], but my neuro wouldn't re-prescibe it for me [I think that's mostly bc I was in college and it has a street value]. Once again, I found the pain-relief negligible, but it sure made me care less.
-you mention walking is hard, so I don't know how helpful this is, but sitting is the worst thing you can do. Lay down or stand up.
-the first 2-3 minutes of walking after sitting was crying, hysterical hell. It got soooooo much better after that, though.
-ice packs. I don't know if it actually helped, but I'm one of those "ice heals everything" people, so always had one. Might have just been extra/different stimulus, but whatever works. I also used a heating pad in the same manner and think it sometimes helped for the same reason.
-deep breathing and meditation, etc. It is really painful, I know. And weird painful, right? How can something numb and tingly hurt so god damn much? Deep, regular breathing really does help, though.
-screaming. it's 2 weeks. Yell, be angry, exhaust yourself from screaming about your horrible pain.
As a final uplifting note, I'm just an anecdote , but my surgery was supersuccessful. The surgery I had (a microdiskectomy) was minimally invasive in 2002. I'm pretty sure its even less so now. Immediately upon waking from anesthesia, just as the surgeon promised, I had relief. I was sore from the hole in my back, but it was sweet sweet nerve pain relief. Instant.
And while there's nice debates about longitudinal studies and whether doing nothing is just as successful, once you've gotten to the losing muscle control stuff, the studies become clearer in favor of cutting. It was 10 days laying down or standing [no sitting!] after surgery and I was done. Well, plus longer term phys therapy to strengthen all the muscles around my disks.
11 years later (if you read the link to my older comment, you'll now know I can't do simple math), I haven't had that kind of pain in probably 8 years. And I run long distances, lift heavy weights and wear high heels. So, there is totally hope. Totally. If you want to vent at me about it, memail me. I'm happy (Well, no, but you know) to commiserate. Good luck! Wow, that got long.
posted by atomicstone at 6:37 PM on August 26, 2013 [1 favorite]
I agree with calling the doctor's office and telling them how much pain you're in. Ask them to call you if there are any cancellations. I started crying on a call to a neurosurgeon's office and got in the next day.
posted by desjardins at 6:45 PM on August 26, 2013
posted by desjardins at 6:45 PM on August 26, 2013
Ugh, I have so been there. L5-S1 totally ruptured, just waiting miserably for my surgery. Here is the answer: Find a rehab pool, one that's kept at about 90 degrees, and that has flotation belts or at least pool noodles available for you to use. Get your flotation device, get in the pool, and just HANG. Getting f*cking gravity off that disc will be such a relief you might cry. You can sort of gently move your legs if it seems to help, but mostly you just need to get the crushing weight of gravity off that thing. Places you can look for such a pool: Many physical therapy offices now have small therapy pools. Lots of nursing homes have pools like this that are open to the public. Some YMCAs have them. Less frequently a university will have one (more likely if it has a big medical center attached).
Good luck, I know how awful it is but I had surgery in 2001 and now am more active than I ever was in my life before the surgery.
posted by HotToddy at 7:57 PM on August 26, 2013
Good luck, I know how awful it is but I had surgery in 2001 and now am more active than I ever was in my life before the surgery.
posted by HotToddy at 7:57 PM on August 26, 2013
Best answer: I second the Mackenzie exercises. They helped me a lot. But that was after the surgery. Nothing helped me where you are now. And when the surgeon found out how much intensive exercise I was doing to mitigate the pain he told me to stop. You could try the Mackenzie exercises but I'd run it by his office first. You don't want to damage the disk more.
With that kind of pain there is not much you can do. Cymbalta is a godsend. It reduced the nerve pain more than any single medicine almost from the first day. It changed the quality of my life completely. That was after the surgery, however. Yeah surgery didn't work for me.
Do call the surgeon to see if there's been any cancellations like lulu68 said. The sooner you have the surgery the better. When I finally saw the surgeon after months of screwing around with injections and other therapies he wondered why the spine guys had not referred me to him right away.
I've been living with this for 7 years. Feel free to memail me if you want to just vent about pain. I'm happy to listen.
posted by vincele at 4:13 AM on August 27, 2013
With that kind of pain there is not much you can do. Cymbalta is a godsend. It reduced the nerve pain more than any single medicine almost from the first day. It changed the quality of my life completely. That was after the surgery, however. Yeah surgery didn't work for me.
Do call the surgeon to see if there's been any cancellations like lulu68 said. The sooner you have the surgery the better. When I finally saw the surgeon after months of screwing around with injections and other therapies he wondered why the spine guys had not referred me to him right away.
I've been living with this for 7 years. Feel free to memail me if you want to just vent about pain. I'm happy to listen.
posted by vincele at 4:13 AM on August 27, 2013
I can completely relate to your experience - writhing pain - I know it all too well. I wasted all sorts of time on physical therapy and chiropractors. Nothing helped until I had surgery. The surgeon even said that I had a remarkably large herniation. The good news is that the surgery relieved the pain entirely! Even immediately after the surgery, I was sore but in much less pain than before.
Most importantly, be very, very gentle on yourself after surgery. It is very easy to re-herniate, especially when you're feeling so well in the weeks afterward. I unfortunately did re-herniate about four weeks after my first surgery. I was looking at another surgery, but the re-herniation resolved itself before my scheduled second surgery. The surgeon agreed that it was best not to mess with it a second time if it was tolerable.
Unfortunately, it's now acting up again four years later. If/when the pain becomes continuous and unmanageable, I wouldn't hesitate to have surgery again.
posted by ReginaHart at 7:10 AM on August 27, 2013
Most importantly, be very, very gentle on yourself after surgery. It is very easy to re-herniate, especially when you're feeling so well in the weeks afterward. I unfortunately did re-herniate about four weeks after my first surgery. I was looking at another surgery, but the re-herniation resolved itself before my scheduled second surgery. The surgeon agreed that it was best not to mess with it a second time if it was tolerable.
Unfortunately, it's now acting up again four years later. If/when the pain becomes continuous and unmanageable, I wouldn't hesitate to have surgery again.
posted by ReginaHart at 7:10 AM on August 27, 2013
Best answer: I've been there. Totally. I had two ruptured disks.
Chiropractic did nothing for sciatica. Stopping that helped a lot.
Physcial therapy was helpful, including some stretching exercises. I liked the warm pool work especially.
Agree, no pain reliever helped. No muscle relaxer, because it was nerve pain.
Ask your doc about Cymbalta or anti-seizure drugs that are designed to deal specifically with nerve pain.
It took 2 epidural injections but my pain finally left. Thank GOD!
posted by Ruthless Bunny at 7:19 AM on August 27, 2013
Chiropractic did nothing for sciatica. Stopping that helped a lot.
Physcial therapy was helpful, including some stretching exercises. I liked the warm pool work especially.
Agree, no pain reliever helped. No muscle relaxer, because it was nerve pain.
Ask your doc about Cymbalta or anti-seizure drugs that are designed to deal specifically with nerve pain.
It took 2 epidural injections but my pain finally left. Thank GOD!
posted by Ruthless Bunny at 7:19 AM on August 27, 2013
IANAD, but I had a badly herniated disc at L5-S1 for about a year while I waited months for an MRI (Canada!) and then briefly for microdiscectomy surgery.
After the acute injury (maybe 3 weeks later) I didn't have too much back pain per se but I couldn't sit for more than a couple of minutes without my leg going totally numb and a lot of pain in my foot. Walking was very helpful for me, though I couldn't go much further than 500m or so before lying down, and it sounds like you are having a lot more pain in your toe than I did.
If opiods aren't effective for you, there are drugs that help with nerve pain in particular (like neurontin?). Talk to your Dr and/or ask for a referral to a pain-management specialist.
I don't know if you have looked into this, but traction (30 mins or so twice per week) at a physiotherapy clinic was extremely helpful for me while I waited for surgery. Getting into a swimming pool as often as I could once I was mobile was also one of the best things I could do to get exercise while keeping weight off of my foot and back.
The surgery, in my case, was very effective. I could feel my foot and toes again as soon as I came to afterward, and 3-4 months out I'm much improved and still getting better every day. Hang in there and don't give up hope.
posted by onshi at 8:41 AM on August 27, 2013
After the acute injury (maybe 3 weeks later) I didn't have too much back pain per se but I couldn't sit for more than a couple of minutes without my leg going totally numb and a lot of pain in my foot. Walking was very helpful for me, though I couldn't go much further than 500m or so before lying down, and it sounds like you are having a lot more pain in your toe than I did.
If opiods aren't effective for you, there are drugs that help with nerve pain in particular (like neurontin?). Talk to your Dr and/or ask for a referral to a pain-management specialist.
I don't know if you have looked into this, but traction (30 mins or so twice per week) at a physiotherapy clinic was extremely helpful for me while I waited for surgery. Getting into a swimming pool as often as I could once I was mobile was also one of the best things I could do to get exercise while keeping weight off of my foot and back.
The surgery, in my case, was very effective. I could feel my foot and toes again as soon as I came to afterward, and 3-4 months out I'm much improved and still getting better every day. Hang in there and don't give up hope.
posted by onshi at 8:41 AM on August 27, 2013
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The second thing that helped was doing something that at first seemed insane: tightly encasing that ailing body part. So for me and my thigh, that meant putting on a very snug pair of exercise pants, the kind that are skin tight basically. It hurt like hell for a few minutes, then the nerve endings sort of got overloaded or something and shut down. I lived in those pants for a solid month.
So, after about three months, the pain is almost completely gone. I'm talking level zero or one, compared to 11 at the beginning. (And I've passed kidney stones and had a baby, so I've got something to compare it to.)
Lastly, I've also been doing some physical therapy - initially started because my insurance company will not okay an epidural without two rounds of six physical therapy sessions first. It has helped a lot - the most helpful elements being traction and electro stimulation.
Good luck in this suckish situation.
posted by BlahLaLa at 4:46 PM on August 26, 2013 [1 favorite]