So Here I Go

[xip]

I've always been proactive in life. So when I realized that the dosages of narcotics required to keep my chronic pain in check seemed to constantly increase, I was more than worried. After all, I had read horror stories of doctors simply and suddenly cutting off patients.

Not wanting that to be me, I inquired about buprenorphine. I had heard that it would provide some analgesia and that upon cessation of buprenorphne, it might even be possible to step down the amount of oxycodone I was using on a daily basis to manage my chronic pain. The total required to keep me upright and mobile was 120 mg.

My primary seemed to think that this could be a positive course of action and I was promptly put in contact with a doctor in my area who could prescribe Suboxone to me. There was a bit of a difference in how I thought that things were to proceed, however.

My primary and I envisioned a two week, rapid taper to get me off of oxycodone and then off of Suboxone. From there, I would wait, as painful as it would be, for about four weeks to assess my pain. Then, I would make an appointment to see my primary and determine my new, lower dosage from there.

The Suboxone doctor stated that the entire process could take one to two years and begin by stabilizing me on a dose over a six month period. This whole thing made me feel like I was simply going to be paying additional sums of money for unclear goals.

No one had doubted that I had pain. I was the one who doubted that I needed so much of a narcotic to keep the pain away. Many people that I had spoken to stated that my initial goal of on the Sub and then off the Sub was the smartest decision. After all, I do have very real pain issues.

I am no too sure what to think at this point. Suboxone does very little to treat my pain. I have no remedy for chronic pain and the longer that I stay on Suboxone, the longer it will take to get off of it.

You would think that a medicine that has been measured to be 25 to 40 times greater than morphine would be providing better analgesia. However, the pain level that I am in reminds me of where I was four years ago.

In short, I hurt all the time and my mobility is becoming more and more limited as each day passes. This is just day ten of my Suboxone journey and the Suboxone doctor is asking me to wait it out for another two weeks.

Does anyone have any input at, all? If I would have known that I was going to feel trapped by a drug that offered me very little analgesia I would have taken my chances with the oxycodone. At least on that medication I am able to play with my kids and help out around the house.

-- Lynn

[TIM]

Hi Lynn,
Welcome to addiction survivors! The good news is that its not true the longer that you are on buprenorphine the longer it takes to get off it. How long is determined by your level of opioid tolerance which was already established before starting the bupe. In your case it sounds like you will need some kind of opioid analgesic, which means if you find the bupe isn't enough, you can seamlessly transition back to the full agonist opioids.

Unfortunately since bupe is a partial agonist it has a ceiling to its effects (analgesic effects too). There are ways to maximize the analgesic properties. Your doctor may have already expalined that dividing up the daily dose into 4 or6 times a day often works best. The 25 to 40 X thing is misleading, since bupe has a ceiling effect additional doses in effect become less and less potent and eventually at around 12mgs, additional dose has no perceived effect. It is only 25-40x more potent than morphine at very low doses (below 1mg) at high doses it has a much less potent effect. Some patients have found a dose and dose schedule that worked for them while others were unable to get enough pain relief from bupe no matter what they did. Trying it like you are seems to be the only way to know.

If you end up going back to full agonist opioids, long acting ones have a lower potential for addiction.

Tim

[OhioMike]

Hi Lynn, welcome to the site!

Tim shared with you some very good factual information. I am a chronic pain patient and also suffer from the disease of addiction. I chose to stay on Suboxone as it is the safest alternative for me to treat my pain issues.

Suboxone (buprenorphne) can work well for some in this area and not so well for others. For pain control it is best taken at a very low dose, preferably around 1mg if possible 2mg tops, IMO.

When I use Suboxone for pain control I will take a small (1mg) dose every 4 hours or so and I take Motrin with it. Though this does not totally remove all of my pain, if makes it very tolerable and me foundational. Further, it is a much safer alternative for me as opposed to full analgesic or methadone.

I have been taking Suboxone for 4 years now. I began on a 16mg dose for addiction therapy and reduced regularly from there. Today often times I go way past the half life limit of the medication and I really have very few, if any problems. So I agree with Tim, the longer you are on the medication does not make it harder to stop taking it. What does this are a number of other factors. How you take it, how you have or are working your recovery in general, other medical issues and medications, your health in general and most of all how you approach life and living life!

Can we simply just stop taking this medication with no ill effects at all? I don't believe so, not for most people, though some have claimed to have. But, the level of discomfort and the post acute withdrawal to follow are not going to be severe enough to compare to what we would expect from other drugs and for many of us, it is really nothing more than having a cold for a short time. As I said, I go through it and manage it just fine and compared to what I experienced from full analgesic, well there simply is no comparison.

In regard to chronic pain in general, I feel it is best treated if we approach it from a whole life stand point and not merely a medical one or medication one! This means again as above, diet, exercise, other therapy treatments and how we approach life in general. I feel we can best manage it not limiting our options and taking it from the broad perspective.

I hope this helps some and best of luck.

Mike

[xip]

Thanks to both of you for the input.

I initially had a doctor who believed in any possible pain management except medicine (well, narcotics). Many of these treatments either had no effect or simply made my condition worse. At the four year mark, I switched doctors and asked for a more medicated approach.

I, just like many have found out, this was great… initially. But over the next four years, I became discouraged because of the ever increasing amounts of narcotics needed to keep me active and upright. The chronic pain individual likes to take solace in the thought that they are not addicted, simply physically dependent. However, it doesn't change the fact that the brain ceases to produce endorphins.

Then, the unthinkable happened. The medicine went from being beneficial, to being in the way. I was having trouble staying awake, I was having trouble concentrating and I was having trouble keeping up in school (A master's degree). I seemed to spend a lot of time asleep. What a wonderful way to go through life, eh?

I knew I had to do something. I also knew that a mixture of the two prior treatments would most likely be best. I don't think that I will ever be "free" from full mu agonists. My goal is simply to limit the usage of them and increase the forms of alternative treatments I seek out and use on a regular basis.

I have lived in a world where it was too painful to play with my kids and I never plan to go there again. My mother in law had to come over to do basic housework for me. Luckily, we have a good relationship and she was never judgmental in any way.

I just want to find the happy medium where exercise, massage and chiropractic along with varying types of medicines keep me involved with my family and my other hobbies.

-- Lynn

[Angiefly2]

Would methadone be a treatment possability? I don't know enough about it but it may be something to research... Have you tried Toridol? It's non narcotic and it helped me with my pain after having a baby and again after having 6 teeth pulled at once. I hope you can find something to help with pain that also will allow you to function... Keep us posted

[xip]

I don't know the specifics, but during an overnight stay at the hospital, Toradol made it onto the list of medications that I was allergic to. I was told that my body had an adverse reaction to it.

Actually, the only medicines that I take on a regular basis these days are Lyrica (pregabalin), Valium (diazapam) Ambien (zolpidem) and Suboxone. I tried getting Subutex, instead for the sole purpose of saving me some money but that was a no-go since ZERO pharmacies within a couple of hours of my home stocked it.

At this point, I am treating Suboxone the same way I treat every medicine that I have taken: What is the lowest effective dose?

But, I am finding that the more and more days that I take Suboxone, the more and more time I spend asleep. Am I the only one like that? I find buprenorphine to be very, very sedating. Just tonight, I was at a (non-drinking) birthday party for about five hours. I slept not less than 3-1/2 of those hours.

This would be day ten on Suboxone for me. Is buprenorphine like other opiates in that regard? In other words, will the sedation disappear, over time?

[OpioidsGotMe]

Hi xip, usually suboxone keeps people up. It is recommended that a person not take suboxone in the afternoon because usually people have a hard time falling a sleep. But I do have to say it is the same for me, I find it to be sedating, but this is probably the fact I take it for pain management also. So the fact it reduces my pain is probably the reason it is sedating for me.

Darrin

[xip]

[this post was moved here for purposes of continuity- ADMIN]

I am a chronic pain patient that ended up thinking that I needed to go on Suboxone based on "fear reports" from the media, a doctor or two and me. My goal was simply to see where my pain level really was and to find out when my body/brain was just seeking out an artificial endorphin.

I was told that while Suboxone doesn't treat pain as well as other narcotics, it does provide some analgesia. Sadly, it does not provide a sufficient amount of analgesia for me.

Since I have been on Suboxone, I have simply been a couch potato. It has been too difficult/painful to play with my kids (8 and 4 years of age). I have tried to do "simple chores" around the house (loading or unloading the dishwasher or folding some clothes) but afterwards, I am still so sore that I need a break. In the five weeks that I have been "free" from oxycodone I have gained about 10 pounds!

Great I have "conquered" oxy! Now wheres my cane! Can someone pick that up for me?

IT HASN"T BEEN ALL BAD. I can finally differentiate my body's actual need for a stronger pain killer and my body simply telling me that I should take a narcotic "just because" ( :ahem: a craving)

I guess I don't fit the mold for a typical Sub user/"needer." The information here has been wonderful to read and learn from. There are a lot of compassionate people who post on these boards.

I guess, in closing, I would say, that if you NEED a stronger pain killer (read:narcotic) that doesn't make you a bad person. There is a point where I just have to realize that my quality of life is vastly decreased because I can't do the things I love to do. I simply hurt too much to do so.

In a couple of weeks, I will return to my regular pain management regiment. It includes a lot of things and it also includes a daily amount of narcotics.

Thanks to everyone here. I do wish you all continued success with your transformation from who you were to the person you are becoming! Suboxone is an amazing tool. I didn't have any cravings or withdrawals in this time frame.

So I bid you all farewell.

Good luck, have fun and stay …alive!

[TIM]

xip,
Anti-drug advocates (as opposed to anti-addiction advocates) have demonized drugs and the people who use them causing some people to not get proper treatment for a chronic pain condition. The stigma is so strong I’ve had a hospice nurse tell me that one patient’s family didn’t allow their dying mother to get morphine drip for her terminal cancer pain because they didn’t want her to die an “addict”. There is nothing wrong with getting proper treatment for a chronic pain condition; quality of life is what matters. I hope you are able to find adequate pain management.
Tim

[xip]

(Thanks to whomever moved the thread. I couldn't find it! I can be such a forum noob sometimes.)

None the less, I have learned a lot from all of the threads/people here. I have read so much valuable information. My Suboxone Doctor was the one who actually told me that I was the one who needed to decide if the medicines were "bad" for me and that I should have the courage to say "I need more so that I can continue doing the same things I was doing before."

I haven't had a pain free day in almost ten years. Narcotics (and other medicines and treatments) make things more bearable. I just wish that one day more doctors would realize that the painma patient feels is real and should be treated in the same manner and urgency that high blood pressure or diabetes is treated.

As I said before, for those of you going through Suboxone treatment for the way that it is intended to be used, I wish you all the best. This website is a great resource and there are very knowledgeable people who will help you get through your recovery.

Take care!

-- Lynn

[OpioidsGotMe]

Good luck Lynn. I hope you find the right treatment for the pain you have. For me the suboxone does not work as well as the narcotics I was taking for pain but I can manage. I was and are in pain either way. But my use of narcotics was out of control and was I was abusing very badly. At least with suboxone I can tolerate the pain without abusing the medication. For you it sounds like you will truly need the full narcotic to treat your pain. I pray everything will work out for the best for you.

Darrin

[NancyB]

Hi Lynn, I hope that you can get some better resolution for your pain.

If you're so inclined, check in every once in a while so we know how you're doing.

All my best wishes.

Nancy

[k3pain]

I never saw in your thread how much sub your takin every day? At least 8-16 mgs first thing in the morning and 4-8 as needed. for me 24-32 mgs per day for chronic pain. But there's some great advice you will get from others, excercise, vitamins, stretching/yoga, therapy mental and physical. Its a big cycle i hope you find relief

[xip]

Thanks for your input. I actually have (almost) all of those non medicine related items in my daily regimen. However, everything I had read (up to now) and had been told by my Suboxone doctor was that the analgesic effect increases greatly to 16 mg but after that, the added dosage (up to 32 mg) was only about half again as effective. Basically, I would only see a 50% increase in analgesia from doubling my dose. So he had me on 16 mg. We had talked about increasing it maybe if I stayed with it longterm.

Unfortunately, I simply need more pain relief than that. In the early going, I was powering through my exercise routine hoping that the "muted" analgesia from Suboxone would catch-up, if you will. My chiropractor and massage therapists were the ones who really noticed how tight my muscles and joints had become. My physical therapist wanted to know "Where did your range of motion go?" I told her that I was still doing all the stretching exercising but I had to decrease the number of reps.

It was actually my Suboxone doctor who told me that it was okay to not be on Suboxone! "If you are still having real pain, then maybe you should return to a regimen that includes narcotics." My psychiatrist confirms that the pain I feel isn't all mental. The frustration I feel from the limitations placed on me by my pain are real though!

All that just to say that I am far from a "medicine only" kind of person. I have remained positive and upbeat, as much as I can, during this experience. I can't emphsize enough how much I have learned through all of this.

You can bet your last dollar that if I find someone that I feel Suboxone can help, I know where (and how) to direct them to! But the facts are simple in my situation: Suboxone isn't for me. My Suboxone doctor even said that, in my case, there may not have been any real reason to go on Suboxone in the first place.

Good Luck, everyone.

-- Lynn

[okie]

I wanted to wish you the best and you are absolutely correct...needing pain medication does not make you an addict, a bad person or anything else..

Seriously, ppl have surgery and such..are they just supposed to lay about in misery? NO.

I am glad you have a decent Dr and will not be pigeonholed and not allowed to seek the proper control for your pain.

It is very common that sub doesnt work for severe pain issues, and many pain issues in general..however the one thing that has been most commonly repeated by members here that have achieved some method of pain control with sub is lower doses..much lower doses..as low as.5-2mgs every 4-6 hrs..regardless do whatever you need to so you dont remain a couch potato..miserable is not a way to live.

Feel better soon!

[PrincessDi]

Lynn Good luck to you and take care of your self. Als o keep in touch and let us know how you are doingBe safe and GOD BLESS Ladydi

[xip]

I will go back on OC at a reduced dosage on the 16th. I am pretty excited about that. However, I know that oxycodone (in whatever form you get it in) has a tendency to seek itself out. It is the only narcotic that I have actual cravings for. But not all hope is lost.

I am armed with the knowledge that I have learned here. I know that it is possible to treat medicine as medicine instead of as a respite. I know that the pills don't leap out of the bottle and force themselves upon me. I need the medicine to function and to improve the quality of my life. The medicine is not for personal enjoyment. When I use it in that manner, I leave out my family and friends.

I just hope that i can be stronger than the cravings.

This website actually gives me that strength. I thank you all!

-- Lynn

[PrincessDi]

Hey Lynn i hope everything works out for you and i hope you feel better... Please keep in touch and let us know how you are doing.... PS I know what it feels like to be in pain 24 hrs a day..... Just keep in touch. Ladydi

[NancyB]

Hi xip, is there someone you can have hold your medication, especially at the beginning to help you out so you can only take what is prescribed? Just a thought.

Best wishes and please let us know how you're doing when you can.

Nancy

[jascade]

Hi Lynn,
Since I am no longer on sub I don't visit this forum as often but drop in now and then. I also am a chronic pain patient and tried suboxone at various doses for almost year before having to go back to stronger pain medication. I hated taking pills constantly and having to deal with the highs and lows that went with it. For the past several months I have been on the fentanyl patch along with a small amount of hydrocodone as needed for break-thru pain and feel so much better! That might be an option for you if you are concerned about the amount of medication it takes to get pain relief. I understand how difficult life can be while living with constant pain and hope find you something that works.

take care,
Susan

[xip]

Thanks for your input, Susan. I tried fentanyl patch but they wouldn't stay on. It didn't matter if it was the mylans or the gels. I even tried taping then on. The determination was just simply that I had "weird pH" and that just happens sometimes.

I just wish that I could go on immediate release meds so that I could decide when and what to put in my body. It seems that it is the constant dose or time release meds that make me "woozy" and such.

I was looking at pictures, that I was in, and was actually asking "When was this?" and "We went to this restuarant/party/house/etc?" SO, I really need to lower my dosage. I am never going to take more than 100 mg total of oxycodone, ever. (I hope)

I have talked to other chronic pain friends who have told me that I should take "breaks" every week or every few days. By doing that, the full mu medicines won't build up as much and I'll be more clear headed.

Time will tell!

But I have to do something. It's been six weeks so far and while I'm enjoying the clear head, I can't stand the fact that I am close to 20 pounds heavier! Ouch. I tried to do some gardening over the weekend and I ended up in so much pain that I had to be carried inside. I pulled a lower back muscle, a trapezius muscle and an ab muscle. That's how "un-limber" I've become.

The 16th can't come fast enough. I'm tired of not being able to do things that was able to do just a couple of months ago! Quality of life is important. But like I said I am grateful for this experience, since;

I feel that the knowledge from this website has made me stronger and smarter.

-- Lynn

[xip]

Originally Posted by NancyB

Hi xip, is there someone you can have hold your medication, especially at the beginning to help you out so you can only take what is prescribed? Just a thought.

Best wishes and please let us know how you're doing when you can.

Nancy

Thanks for posting, Nancy. I've really never had that problem because I actually hate those medicines. In all the years that I have been on pain meds there have only been a few times where I ran out. But it was a monetary thing. I couldn't afford to go to the hospital so I called my doctor and asked if I could just took a little extra. My doctor would adjust the dosages for the next month. This, of course, meant MORE med and less brain! (lol)

That's been a bone of contention with me. My doctor will prescribe all of the time release meds that I want. But, those are the meds that give me the most problems. The medicine is ALWAYS in my system. After awhile, I just become forgetful and stupid. My significant other was always telling me that I was falling asleep and that I was different.

I hated it.

-- Lynn

[jascade]

I had that same problem. No matter what type of patch or what brand I could not keep them on, even with tape. I then heard about a product called "Tegaderm" (in the first aid isle) kind of spendy but works great.
Also, most makers of patches will send you covers for them free of charge if you call them with a lot # from a box of patches.
The immediate release meds are the most difficult for me. They do work but wear off after just a few hours and always made me feel like I was watching the clock for my next dose. (those highs and lows I mentioned)
With the patch I can put it on and its there for at least a couple of days.
Most days I still have to take something for break-thru pain but not nearly as often. Still each of us is different and it can be so frustrating trying to find something that brings even a small amount of relief. I hope that you are able to find whatever it takes to give you your life back.

I wish so much that sub would have worked better for both of us. It is interesting how so many can find pain relief from it while others don't. Other than the pain issue,I felt so much better mentally and emotionally while taking sub which is why I stuck with it for so long. I wish that more pain management Drs would offer it and hope that insurance companies will soon begin to cover it for the use of chronic pain.

take care,
Susan

[xip]

The truth? I dread the day I go back on oxycodone. I hate the mental fog. I hate the forgetfulness. I hate the not really there feeling. I hate that everyone notices: "Are you sleepy?"

But I have to do it. I can't be this couch potato. I really hope that my reduced dosage will do the trick. I am up to twenty pounds over my initial weight.

The other day my son fell down and hurt his knees. He was crying and wanted me to pick him up. I was physical unable to do so. I couldn't even bend down to comfort him at his level!

I felt so helpless. So with as much as I hate oxycodone, I hate not being able to do things even more. It is so painful, mentally, emotionally, physically to feel so… useless.

At the same time, I hate being "trapped" by a bottle. Sub is a dream. A painful one but it is so much better. I did find that 8 mg was just as effective as 16 mg. I've been taking 1 mg (approximate) doses, eight times a day. It's a lot of dosing but it is what works best right now.

Did I mention my back is on fire? I tried to do some gardening last weekend. I somehow pulled my lower back muscle, a trapezius muscle, a lateral oblique and an ab muscle. I just can't do the things I used to and want to do. I was in so much pain. I ended up in bed for almost two days. I still can't move about without my wheelie walker or my cane(s).

I'm only 36. My kids are (almost) 9 and (almost) 4. I am not letting this pain control me and keep me from being apart of their lives. Plus, my signicant other deserves the person that was at the wedding, not this shell that struggles from room to room of our house.

So onto the full mu agonist! But it's like I've said before;

I go forward with confidence because of the knowledge and support I've found here.

Good luck and God speed!

-- Lynn

[NancyB]

Hi Lynn, just a thought, but have you checked to see if there are any clinical trials for alternative pain treatment in your area?
http://www.clinicaltrials.gov

Maybe there's something that could help? I hate to see anyone in pain.

Susan! So good to hear from you and that you're doing well!

Nancy