Pain meds progression? Stimulator ? also.

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Tom Jefferies
New Member

Date Joined Apr 2010
Total Posts : 4
   Posted 4/18/2010 3:25 PM (GMT -7)   

I have very bad leg pain, as well as a few back problems (still can't fully understand what, but based on the various surgeons something to do with my discs, nerve, etc.) and the pain is from mid high back to lower back as well as front of one leg and the side of that leg.

2 years ago I got a electric stimulator implanted and it has just run it's course. The main problem I have is that it works when my back pain is not bad, when my back pain is bad (90% of the time) then the leg pain is really bad.

I've been on 90 Norco's 10/325 I believe, but in the last few months I rate my avg constant pain at an 8. The pills offer some relief, but just not as they did before.

Gone through the nerve block shots, PT, a brace, etc. I was wondering from what is a medicine a small step up from what I'm taking which could either be stronger, or last longer than the current 10/325's. I ask this not to go into the doctor with a laundry list, but more as a research tool so that if he changes my medicine I can be educated. I have a very good PD, but at heart I look into most everything.

Surgeons said they could do some surgery, but I would only be better for like 10 years and then be worse, my quality of life has gone downhill and I can't play any sports anymore. Just need to figure out a good medicine which can let me stay aware (not a zombie) and function at a normal level.

One last thing, has anyone found after the permanent implant of their Stimulator that it just didn't relieve pain anymore (years down the road)

Thanks for all of your help, suggestions, and comments.

God Bless....

Veteran Member

Date Joined Jan 2010
Total Posts : 3557
   Posted 4/18/2010 3:43 PM (GMT -7)   
Hi Tom,

Welcome to HW..We are sorry to hear that you have chronic pain..but happy that you found us for support...

No one on the forum is a Dr. so we aren't qualified to give you advice on what medicine would work for you...since it's really different for each person...what works for me, may not for you, etc..

There are also other medicines that most CP'ers take like a muscle relaxer, a nerve pain med, an antidepressant, and a sleep med....some or all of those seem to have a much better cumulative effect with any narcotic alone..

So it sounds like you have a wonderful and caring Dr. that I would think if you go to him and say that you are not being covered well enough throughout the day with your medicine and scs, that he will offer other suggestions...

I have found that living with CP for over 9 years..that I have to use all modalities everyday, not just medicine, to keep my pain levels at a 5 or 6 which is what we cp'ers can expect long term...

I eat all organic, don't smoke, do yoga, take my doggy on about 3-4, 10 to 15min walks per day, try to find something to make me laugh each day, etc.

Other modalities that I have used are acupuncture, cognitive behavioral therapy, kinesiology, massage, pastoral counseling to help deal with CP, and many others...

You will find some wonderful links about chronic pain at the top of this forum with the tab Chronic Pain 101...

There are a great group of people here who can share more about their experience with the SCS...I have never used it..

Again..welcome to HW:)
SB and "the pup who snores loudly" 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Dec 2006

Tom Jefferies
New Member

Date Joined Apr 2010
Total Posts : 4
   Posted 4/18/2010 3:55 PM (GMT -7)   
Thanks for the reply.

Forgot to mention I am also on Flexoril as well as the Norco. Tried yoga, but I can't even get into the first and most basic position. Received a few books on yoga for people with pain or bad backs and I can't arch my back, I can't do the leg lifting etc. Physical therapy was ok except when I had to do standing exercises and then I had to stop as the pain was awful.

I didn't mean to come across as wanting medical advice, just looking for what others had in the way of progression of meds.

Once again thanks for the reply.

Veteran Member

Date Joined Feb 2009
Total Posts : 999
   Posted 4/18/2010 4:27 PM (GMT -7)   
Tom, Sorry to see you at this forum but if you are dealing with this kind of pain you are at the right plce. We are not doctors but have been to so many and tried so many different things that drs are no longer the source of our relief. We find support and encouragement here from people that have gone through pain from a wide variety or reasons. I have been dealing with back and leg pain for over 11 years and have had 3 surgeries as well as a SCS implanted. Many here will share some of the non-medical things they try to help relieve pain as well as the treatments they are receiving from the medical world. There are times that we can find temporary relief by following what others have done. I have my email attached to my profile and I would appreciate an email from you. I don't normally request such things but you will see why if you contact me. Thanks and look forward to having you join us.  

Regular Member

Date Joined May 2008
Total Posts : 177
   Posted 4/18/2010 5:16 PM (GMT -7)   

Welcome to the forum. There are always stronger meds, right up to the point where they kill you. The trouble is that people are creatures of habit. We get used to things, situations, painkillers and pain itself. Basically you have to find a balance because, let's face it, we'll never be free of pain. "Painkiller" is actually a frightfully misleading term, pain meds never "kill" the pain, they just make it more bearable. Too many pain meds make your live even more miserable than living with pain and without meds, I've been there. After years, I've found some sort of balance, though we're still finetuning it. Adjusting your daily routine might be a tip. Someone here on the forum told me to pay attention to the little things like the kind of chair you're most comfortable with, like putting a cushion in the right place, etc. These small things made my life way better; it's just a question of trial and error.

Don't know anything about the stimulator though I'm curious to know whether or not people get used to that as well.

DIscussing your meds with your doctor is important, but it has to be a real discussion not just you asking and he/she answering. Make clear what your current situation is as to the limits of what you can and can't do. Then tell the doc what you'd like (in real terms, we'd all like to be healthy of course but let's keep it realistic) and see what can be done.

Good luck and take care.
To stand and be still at the Birkenhead Drill is a mighty bullet to shew.

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3673
   Posted 4/18/2010 10:33 PM (GMT -7)   

The thing about pain med is what works for one person, might not work for another! So it is almost a necessity that you talk with your pain doctor and let him know that you are in pain and how bad it is, and how often it is bad! Start keeping a pain journal listing down the time and intesity of your pain and what you were doing at the time. Do this for a while and bring it with you to your Doctor and give it to him/her and stress how bad you are feeling and the stimulator is just not doing the job. Be open and honest, and hopefully between you and your Pain Doctor you can get suitable relief from your pain!

Good Luck to You

White Beard

Veteran Member

Date Joined Jul 2008
Total Posts : 2315
   Posted 4/19/2010 8:27 AM (GMT -7)   
Hi Tom,
I have an SCS & have to have it reprogrammed every year or so. I think that would be a good first start. Talk to your rep & ask them to meet you for reprogramming. Sometimes that can help. As long as your leads haven't migrated, there is a decent chance that will work. If you meet with one rep & don't get any relief, ask to meet with another rep & then with an engineer. (Well, I'm not actually sure that your model will allow for all that. I have a BS Precision unit & that's what works for me, but if they don't have those exact options with your provider, be persistent & keep asking who is more expert in servicing your unit).

As for the meds, there's no guarantee that your doctor will just up your current med. Especially since it has acetaminophen in it. S/he might switch you to another med & there's no telling what that might be. But once you meet with your doctor & s/he makes a recommendation, you can definitely post that here & ask what people's experience with the med has been.

For me, I have the SCS in my neck & while it is able to provide some relief to my legs, it's not in the best place to do so. It was really just happy chance that I got that added benefit beyond the relief for my neck & right arm that caused me to elect the implant. But later on I had radio frequency nerve ablation (RF) in my low back & that helped quite a bit with my pain down my right leg. What's helped me the most, though, was getting a home traction unit. It has been a total godsend. I had given up on ever being able to be even minimally active, but with the help of the traction unit, I am now able to walk 0.5 miles at a time. I am able to participate in social activities with my friends & I am hopeful that if I can get my headaches back under control (it's time for reprogramming again), then I'm told I can even participate in dance lessons this summer. So there is hope. Maybe not to go back to playing sports, but certainly to be able to participate in normal daily activities.

Hope you're able to find some relief!

Tom Jefferies
New Member

Date Joined Apr 2010
Total Posts : 4
   Posted 4/21/2010 9:00 PM (GMT -7)   
Thank you for the replies, they are appreciated, but I am not sure that anyone really provided any names of medicines to research or talk about.

I was started on Embeda today and it is too early to tell if it works or not, Dr. said to give it 5 days. Not really sure I am that keen on this drug as my research indicates a few things. If someone was on Kadian and it didn't work, then this will probably not work. Was not informed about not taking any other meds with this and it's been noted that if you take Hydro, Norco, etc. with this then you have a really high chance for respiratory failure. Also the price is $200 for 60 pills, that is after a $60 rebate from King Pharma. Feeling some uncomfortable side effects, but they may go away.

To go back and answer a question, I have been reprogrammed 5 times in 2 years and I only have 2 leads so I'm limited on where I can get relief at.

Pain journal, good idea, and have started that.

The post about we will never be free of pain. I kind of agree, but I kind of don't agree. With my old medicine combination, I could get to a 2 or 3 with 0 side effects. Lately that 2 or 3 is very short in duration. For example I went to see a movie (in very very comfortable chairs) I took a half a pill before I got into the movie and bam within 20 minutes I hurt incredibly bad, I took another half (these are Hydro's so they are scored) and I just couldn't take the pain so I had to leave. A year ago that would have been fine and I would have been able to see the movie because the half and even one other half would have quelled the pain. Now the back pain is so bad and it exacerbates the other pains.

Veteran Member

Date Joined Jul 2008
Total Posts : 2315
   Posted 4/22/2010 10:05 AM (GMT -7)   
I wouldn't worry too much about the respiratory issues if you have been on Norco for a while now (as long as your doctor said it's okay). People develop tolerances to the side effects & so adding on more medication or a different medication won't have the same effect as if you started out as an "opioid naive" patient & took the two at once from the start.

As far as the "zero pain", yes, it is obviously nearly always possible to go down to zero pain, but there are serious side effects to narcotic pain meds (and non-narcotics like advil, aspirin & NSAID's & acetaminophen). Doctors generally try to carefully manage pain meds so as to allow the patient to receive the minimum benefit necessary to be healthy (for example, being bedridden is dangerous because blood clots can form). That way they are not trading their long-term health for being able to play sports or perform heavy lifting/manual labor.

I know it's hard to think of it that way. For a long time I said I didn't care if I ended up like many of my relatives & died of liver failure from taking enough pain meds to be able to continue my teaching career. I loved working with children, but the pain from being on my feet & walking around the classroom all day was really endangering my life. I was throwing up a couple of times every day because the pain was so bad. Yes, if I took enough medication I could function fairly normally with little or no pain, but the risk to my liver & kidneys of taking the increased dose would have drastically shortened my life (read: I'd likely not live past age 40).

So the compromise is that I can be on enough pain meds to be able to last nearly 30 minutes without being crippled by pain (level 5). No more running half marathons. No more teaching (I have a desk job). No more lifting objects heavier than a gallon of milk.

And for a long time, it was way stricter than that. But I've now been working with a home traction unit & am told I can now do simple things like walking ... and maybe soon: ballroom dancing. :) I've also been cleared for some light hiking (no scaling walls or anything, but it's nice to be outside). But with each new accomplishment, my pain meds are decreased so that my pain stays at a steady 4-5.

Of course we all want to be at a 0 on the pain scale (or at least down to a 2 or 3), but few doctors are willing to write prescriptions to get patients down to those levels due to the permanent damage that they can cause. If someone's life is in danger in the short term due to immobility then it makes sense to get them on enough of a medication, even a medication that could kill them in 10 years, so that they can move around & get their blood flowing & get healthier. But if someone is relatively healthy, why would you want to give them something that will cut their life short?

I hope you don't take any of this as being harsh or judgmental because like I said, for a long time I really wanted to be pain-free at any cost. But after one medication caused my kidneys to stop working for 3 days, I realized that the dangers are very real & medications should be used as sparingly as possible. And the same goes for surgery, for that matter. There are so many complications & outcomes are almost never 100% perfect. The goal is just to be able to get around, go to work (if at all possible) & be able to independently take care of yourself (washing, grooming, etc.). And that's an incredibly, incredibly hard reality to face. And I wish you well with your journey because we all know it is never easy.

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