chronic pain/medication help

As a brief background - I have very advanced Degenerative Disc Disease, along with bad arthritis/spurs/nerve damage - all in my neck. 5 of the 7 discs are in terrible shape - I've been told by several doctors that it is very advanced for my age (34). I've been through a great deal of pain management including massage therapy, physical therapy, chiropractors, injections and procedures on my neck. Not a whole lot has helped and I'm trying to avoid surgery.

For approximately 12 months the pain was managed by my pain management doctor on short acting oxycodone (30mg 3 times per day). Wasn't the best schedule, especially long term, to manage the pain. I'm a chronic pain patient, but seemingly was being treated as acute pain.

So I made the decision to get off that dose schedule by switching to suboxone. Exactly 1 month ago I switched to suboxone, taking 10-12 mg a day the first week. I was ok (pain wise) the first week and ever since it quickly has advanced to being entirely unmanaged. I'm back in extreme pain all the time again, not sleeping well, etc.

To deal with this, my new pain mgt doctor suggested I increase the suboxone dose (from 8mg to 12/16 mg per day). I went up to 12mg for a few days and it didn't seem to relieve the pain at all. Not wanting to be on this drug long term, I tapered my dose down (again since the higher dose wasn't helping anyway). I'm down to 2-4mg per day (alternating days). In addition, I've tried ibuprofen, advil, tylenon...and have been prescribed diclofenac, tizanidine and clonidine. Nothing is helping me! I stopped everything except the suboxone and clondine (which I take to get some sleep/relief...only lasts for a few hours at night).

My question is - has anyone had success on suboxone for pain management long term? I've read for pain management - it's not a general practice to be on a high dose - which is why i've continued to taper my dose after it still gave no relief at 8, 10 or 12mg. Plus, being on suboxone I don't believe it's an option to take anything short acting for extreme pain (since non of the anti-inflammatories or muscle relaxors have helped). And I really am not too thrilled about taking suboxone long term for pain management due to the cost (my co-pay is significantly higher monthly compared to other things I've taken).

In my situation, I know of oxycontin and methadone as far as long acting pain medications (and I believe you can take things for the extreme pain on top of those). Are there other choices? (I did try nucynta in the beginning but I had terrible side effects to that medication). I'm not thrilled about the cost, but could I manage my pain on suboxone taking 16mg+ per day as my doctor has suggested? Should I entertain the idea of switching to another long acting medication like oxycontin (or other choices)? Any advice would be appreciated as its been about 3 weeks and anyone in extreme would understand that every day seems like a week...I havent slept more than 3 or 4 hours at a time in weeks...I can't concentrate. I have a full time responsible job and two little kids that I adore and everything is a mess right now because my pain is entirely unmanaged. I don't even know if I have to be off suboxone completely prior to switching something else. Please help :(

punk,

hello and welcomometo HW Chronic Pain community, glad you found your way here. you are among people that will understand what you are going through, and if you ever need to vent and get it off your chest, you are more than welcome to do so.

you haven't found the right "mix" of meds, to me. you, from your own trials and description. need to be on something that is strong enough to truly manage the pain, yet leave your functional at the same time.

i am on the combination of fentanyl (synthetic morphine) patches for the major pain, and they work well for mme. i use Loratab for break through pain, i have "x" amount of them to use a day, and i have worked out a schedule for their use with the blessings of my oncologist who is also my PM. it works for me, and i am still very functional, especially on the mental side of things. on the physical side, i have enough radiation damage and cancer pain to keep my body busy fighting pain.

if your pain is truly long term and chronic, it might not be in your best interest to be worrying about being on meds long term. getting and keeping your pain under control is far more important, especially in view of Quality of Life Issues You have to tell yourself, a severe diabetic has to take insulin every single day, for example. There are lots of medical maladies which require steady medications in order to function and have a good QOL. your situation may be another one that requires this.

you mentioned changing doses. are you doing that on your own, or under your doctor's advisement? i am a big believer in only doing as doctor orders. i stay in close touch with mine, and when we make med changes or even dosing changes, its always by mutual aggreement.

i hope you find the ultimate right mix for you, and can see some steady improvement.

my best to you, please stay in touch here, and never give up hope, there is an answer for you out there

david in s.c.

Gabapentin is generally used for nerve damage and nerve related problems. My oncologist had me try it for 2 weeks as an experiment earlier this year. I know other men with prostate cancer (my big issue) that have used it and all of them dropped it too. It did nothing for my pain, it made me feel strange and distant, didn't like that feeling. According to my wife (she's a nurse), she said it made me act very aggressive, which is odd, because by nature I am a very passive person. Needless to say, that experiment didn't last long.

We also did a test run of oxycodone, don't even remember the dose, but it too did nothing for my pain, might as well taken sugar pills. Shows you how much different meds work or don't work on different people.

The last test, was with Dilauid. When I have been hospitalized, I really liked it, when given in larger doses via an IV, as in post major surgeries. Twice I have tried it in pill form. In the lower doses, it did nothing for my pain, I had assumed it would be similar to the IV type. For it to work for me, the larger doses would leave me hazy and dizzy, neither feeling is acceptable for me from a QOL point of view.

In the end, he let me go back to the Loratab (10/500) for breakthrough pain through out the day. I have no bad side effects from being on them for over 2 years. Unlike many people, codeine meds do not constipate me, which amazes the doctor. They do not make me feel "high" or sleepy or anything else. They simply cut into the pain. I take 2 at the time, 3 times a day as a rule. On a rare ultra bad day, I can take another 2, for a max. of 8. At that point, the tylenol portion of the med could be dangerous, so I try to stay at a max of 6.

I have been made a believer out of fentanyl. It really cuts the raw pain right down, making the Loratab easier to work. I switch patches every 2 days, rotating arms each time. You do have to be careful on , and to avoid the sun and excessive heat, as heat can make the skin absorb the med all at once, which can be dangerous, or even deadly in some cases. But it works well for me, and allows me to be fully mentally functiional, which is very important to me.

It's all about compromise with CP, you have to make trade offs. My dr. could eliminate 100% of my pain, 100% of the time, but to do so, I would have to be medicated out of my mind. I am not ready for that, as my cancer continues to progess out of control (I am past the point of it being curative, all treatments have failed), I may have to be medicated more heavily. So I am willing to trade some pain, for certain functionality. Those kind of decisions are very personal and subjective. All our pain threshholds are very different. I value my ability to think clearly, so right now, my meds take care of most of the pain, most of the time. LIke many here, I have my bad days, they are random and hard to predict. So on those days, I just have to back off.

As far as venting, it can feel good, and here, you are preaching to the choir. We all do it when needed, and no one is going to jump down your throat. It's good to vent to a crowd that truly understands what it means to live with attrocious and continuous pain. There aren't many people in our everyday lives, including loved ones, that can fully understand what we go through.

Good luck again. Glad you got a good PM doctor, that is half the battle, and you are fortunate there.

david in sc

There are plenty of other options available for long acting pain medications for you to try before resorting to suboxone. Suboxone is supposed to be used primarily for opiate detox/withdrawal and long term management of addiction. It is /has been used with some limited successes at low doses in the management of chronic pain in addicted individuals and those without addiction tendencies as well but it's successes are limited. The higher doses of suboxone are generally used to treat withdrawal symptoms in addiction so the doses that your PM is recommending are not usually used to treat long term chronic pain..that being said, you do have many other options rather than using short acting opiates to treat your chronic pain.. Oxycontin is the long acting version of the oxycodone that you were taking. The opiate is the same- just the dosing schedule is different and allows for a more smoother delivery of constant pain relief rather than the ups and downs that come with short acting formulas of opiates. A long acting opiate can be combined with a short acting /fast onset opiate if needed for what is called breakthrough pain- that pain that can not be managed with a long acting opiate and other pain management techniques. Just remember, if you do recieve a breakthrough medication for those flare ups, to use it sparingly, otherwise it just becomes another addition to your base level (long acting pain medication). There are long and short acting morphines, fentanyl patches, neuropathic pain medications that do much to ease pain caused by nerve damage or compression of the nerves in the spine, anti inflammatories, muscle relaxers, and the use of swimming, TENS units, topical creams and over the counter heat and ice patches and analgesics that all can help to reduce the pain , as well as using plain old ice and heating pads...

And yes, you do have to wait to start a new opiate when going on or off suboxone, otherwise there can be some complications to using one or the other too soon after stopping or starting either medication so be sure to discuss that with your doctor...

Good luck

Sandi

Punkfan11,

Welcome to HealingWell.... but I'm sorry that you are suffering from chronic pain. :( It's extremely frustrating to try to manage a FT job... children....etc. when pain is not controlled. Many of us here also suffer from insomnia. So add together uncontrolled chronic pain.... and sleep deprivation.... ugggh.. It IS a mess, to say the least! It wears on a person physically and mentally. Many of us here have depression related to our health/pain issues.

Unfortunately, so much of it is trial and error in terms of get the right mix of meds to help w/ your pain. You are correct... most of us here are on a long-acting (LA) medication and a short acting med for break through (BT) pain. For instance, I'm currently on oxycontin as my LA med; dilaudid for BT pain; and my PM just added another BT med (Actiq) for severe pain. On top of that - I'm also on a muscle relaxer and a nerve medication.

As David said... it's also a trade-off between using enough medication to help w/ the pain... yet not using too much that you get unwanted side effects.

Finally... along w/ the other meds mentioned, there is also long-acting morphine. Many of us here have had success w/ it....(different names for the drug = MS Contin, Kadian, Avinza, etc).

Good luck at your next PM appt... and let us know how it goes. --Tina

thank you everyone for the information and support! It does feel better knowing people can relate and understand! The suboxone I am on currently was used to stop the medication schedule I was on before (which was using short-acting oxycodone/percocet 3 times per day as my only medication). As stated - the ups and downs and side effects with that were something that was bothering me so I spoke to my doctor and made a change. He seems to be a fan of using suboxone for learn term pain medication...I just don't want to go that route...it has not been affective and the cost. so originally it was used to stop the ugly cycle I was on...the doctor has just entertained the idea of continuing the suboxone and using that long term. That just won't work for me...with the cost and as jjcaddell said, not being able to take anything for breakthrough pain these last few weeks has been horrible. Thank you for the different options provided...I didn't even realize some of these meds were out there (butrans, long acting morphine and some of the others mentioned). I will be discussing a lot next week at my appt. I really do appreciate the kind words and loads of information! Hope everyone has a nice day!