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Chronic pain/pain medications

I'm new to this but thought I'd give it a try. I've had back issues the last 8 years. Had back surgery 6 years ago to help with one issue. They ended up removing a piece of bone that was rubbing on my pelvic bone. The more I do physically, the more pain I'm in. My doctor called it pseudoarthrosis of the sacrum. I also have an L-6 which causes a ton of pain. I've tried everything. Chiropractor, physical therapy, injections, yoga, stretches, and numerous medications. I'm having to take oxycodone 4-6 times a day. I hate it. It works pain wise, but I hate being on pain medication. I'm so tired of the whole process. I stay home with my two year old daughter so I'm pretty active. I take the meds to be able to function and get through the day. But, I'm wondering if it's worth it? Is there something else I can be doing? I'd really like to come off the medication and deal with this in a different way..... just don't know what to do. So..... Any suggestions? Please and thank you.


  • LizLiz Posts: 7,832
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  • dilaurodilauro ConnecticutPosts: 9,866
    edited 03/04/2014 - 3:45 PM
    Talk to your doctor(s) to see if they feel any additional diagnostic tests are justifiable. What was your doctors opinions/advice based on your last clinical examination? What do your doctors feel you should be doing right now?

    Is surgery an option?, If not, what are the other paths they want you to take.

    Pain medications are just one piece of the total package in pain management. I always talk to other members about The Blend , because there are several components that are needed.

    For many, approved exercise programs and over the counter medications are all that is required to manage and control your discomfort and pain.

    There is always something that can be done besides pain medications to help you live a normal life.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I had back surgery 6 years ago that helped with the bone rubbing on my pelvic bone. As of now they can do a fusion but I'm definitely against that. Injections, physical therapy, snd chiropractic wasn't working. I've been doing the meds and exercises at home. My pain gets very bad when the weather changes, especially when it's cold. I'm just tired of it.
  • As for my doctor, he doesnt think I should do another surgery right now. He's not thrilled about me being on pain meds but he knows how my pain gets and i need to be functional for my little girl. So he thinks I should stay on them and try strengthening my back. We also may try a topical cream. Don't know much about it but I've heard decent things.
  • Topical stuff is garbage.
  • dilaurodilauro ConnecticutPosts: 9,866
    There are many topical creams that you can purchase over the counter. A lot of them contain capsaicin as their active ingredient. That is the active ingredient in hot peppers. These creams are very useful for many acute related problems, providing temporary relief from strains, sprains, and muscle aches. There are also helpful in dealing with chronic pain issues such as neuropathy.

    There are also several topical ointments that are available through the internet only. One such is called bio-freeze. I have been using it for over 8 years now and it has been very successful in helping me. It doesnt eliminate the pain, but it does wonders for reducing some of the intensity.

    Plus there are a number of prescription topical ointments that go very far in reducing pain and discomfort. I have used volatran gel for uses for my arthritic joints. You8 would be amazed on how that reduces the joint pain.

    So you can see topical ointments do help. A lot depends on what ointment you have tried. So members like the one above did not find one that could be of any value, thus the extremely negative comment. To JRP1122. who asked the question about topical, I would definitely say to try some. You might want to talk to your pharmacist and/or doctor to find one that might be right for you.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • The one they're suggesting is made in a compound pharmacy. Think it has a minor muscle relaxer, anti-inflammatory, lidocaine, and even a small amount of ketamine. The ketamine part freaked me out but my doc and the pharmacist said it was nothing like the way people use it rrecreationly. I asked if my body will become dependant on it and they said no. So i guess it's something I need to think about.
  • I've tried bio-freeze, and numerous OTC patches and creams. Unfortunately,not a whole lot of luck. Bone pain sucks! :(
  • I like topical creams for taking the edge off of my pain. I have a prescription one that contains ketamine that has good numbing qualities. It's fantastic for my finger joints. If I use too much it gives me a hangover. For some reason I never thought that creams could be that strong. I was surprised that I had to be just as careful to follow the dosing instructions as with any other medication. (compounded creams can be VERY expensive if your insurance doesn't pay 100%)
    I also use an aromatherapy oil blend that's topical. Its worth talking with your doctor & trying these things. In my opinion every little helps. ;-)
    Osteoarthritis & DDD.
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 03/05/2014 - 8:49 AM
    I've got 2 little kids so I know what you mean. Have you tried titrating down on your pain meds to see how well you can function? I just can't get by without. At the end of the day you've just got to do what has to be done to live. Only you truly know your pain & what you can handle. There's so much negative press about narcotics but taken responsibly they're just another medication that some of us need to get through the day with an acceptable level of pain. I hope you find an alternative that works for you. Most treatments come with their own risks.
    Osteoarthritis & DDD.
  • EnglishGirl, that's the part that sucks. Insurance won't pay for it. I guess they can do some kind of discount which comes up to be about $1 per gram. My doc wrote it for 180 grams.The good thing is that I can have them make what I want. So I may be getting 50 grams done just to give it a try. Guess it's worth a shot.

    The last few days I've been taking less as far as my meds go. I've been in a lot of pain which brings my anxiety level up as well. Now I'm guessing some kind of withdrawals have something to do with it. Taking care of a two year old isn't exactly the best thing pain wise. Good thing she's cute :)

    It just sucks... such a vicious circle, ya know? And I agree, the press is making it sound like a horrible thing. Makes me feel like a failure. Every time I go into the pharmacy I usually feel like a piece of crap. So I get wondering if it's all worth it?
  • thoracic spine painthoracic spine pain Posts: 566
    edited 03/05/2014 - 9:47 AM
    I know my pharmacist really well and have made sure, as I have been going to them so long, they know me. I use a local pharmacy, they have seen me on some pretty bad days, the girls all know me from before and after my accident. We don't have pharmacies in Australia like you have in chain stores and have the same pharmacists all the time.

    Bit like work really. make a friend of at least one of them who is there all the time and they are great.

    Most pharmacists can see your pain as they see so many people. If you can I would use a small one so they get to know you as a person and an individual. I love my pharmacist, in fact all the people who work there. They never treat me like crap. They always say - you look like crap today you're white as a sheet. Same with my GP, he is local as well.

    I have moved and have to get another Dr and pharmacy - my pharmacist advised me to stick with them as they know me and I won't have to jump through all the hoops again. Try a small local pharmacy where they get to know you.

    I don't watch TV but we don't seem to have the same problems with negative coverage here. If you need your meds to function, take them. Don't feel guilty. You wouldn't feel guilty if you had any major disease or anything else.
  • JRP1122JJRP1122 Posts: 15
    edited 03/05/2014 - 10:38 AM
    Thank you I get what you're saying. Last month I went to A smaller pharmacy that was in my doctors building (instead of smiths). They were pretty awesome. Sometimes I just run into problems with filling it a little early. The reason why I I do this is because i really don't want to raise the dosage. Instead, my doc Told me to fill a little early so I have a few for back up. Sometimes it feels like the pharmacy and insurance companies don't realize how chronic pain works. I just hate feeling guilty and feeling like they look at me like I'm taking these for recreational use... Which isn't the case at all. For those of you wondering I'm taking oxycodone 20mg 4-6 times a day plus promethazine for nausea from pain. Sometimes I'll also take an ambien to get a few hours of decent sleep.... Unless my daughter wakes me up ;)

    Thanks for all the positive encouragement. Makes me feel a little bit better about having to live on meds. I'm still just up in the air about staying on them. My back pain gets horrible. The more active I get. The more painful it gets. It's bone pain so it's I very achy and feels like I have a ton of bricks in my spine. I just want to give myself and mainly my daughter a great life....
  • I have had back problems for 25 years. As my pain has gotten worse so did the comments about needing to take opiate pain medication. Though the years I have heard from some nurses and doctors who just met 2 minutes before telling me that I should not take opiates long term because you will be addicted. Even those who work in the medical field do not understand the difference between dependence and addiction. About the 12 years ago I drop the guilt, shame, worry and all the other negativity that I allowed others to influence my view of myself as a total failure because of my limitations due to my chronic pain and the need to use medications that contain opiates. Today I view my pain medication as a medication I need just like my blood pressure medication. Today I have a few close friends, family and of course my doctor who knows about me taking pain medication. Unless I really need to tell someone I don't tell others because I am sick of being judged from others who do not even know me.
  • JRP1122JJRP1122 Posts: 15
    edited 03/05/2014 - 3:34 PM
    Thanks Jam661.... and I agree 100%. Most people don't understand what it's like to be in pain constantly. I wish stuff like tylenol, alive, ibuprofen, etc worked for me. I really do. But it doesn't.... at all. I've always had luck with pain medication. And there's a reason for that.... they actually work. Before my surgery I was trying soooo many different things. Oxycodone and fentenyl patches, opana, lyrica, some other type of morphine that was for 12 hour (that was the worst). But now I use Oxycodone. It works but I just hate all the crap media it gets. Makes me feel horrible about myself. I'm not crushing it up, snorting it or anything like that but it still makes me feel like a failure. But you're right, I need to start looking at my medication more of medicine than what the abusers and media says. My husband doesn't even want me off my meds. He sees what the pain does to me and how the meds work. But sometimes this whole process just gets to me emotionally...

    On another note, do you guys usually have any problems filling early though? Is that 80% law usually done with most pharmacies and insurance companies? Me and my doc just decided that filling it early would be better than upping the dosage. Sometimes the pharmacies say insurance won't cover it until a certain day. One time they told me they wouldn't cover it until the day after it was due?? Hopefully I'll have better luck with this new pharmacy I'm going to.

    Oh and I wasn't even trying to fill at the 80%... it was more like 2 days early. Got a lot of crap some of the pharmacist

    Post edited by Sandi- naming of business , doctors, medical facilities is not permitted on Spine Health.http://www.spine-health.com/forum/forum-rules
  • sandisandi Posts: 6,343
    edited 03/05/2014 - 3:32 PM
    companies play a part in determining how long a prescription is supposed to last, based on the dose per day, and how often it is to be taken. Each prescription has a MDD - or maximum daily dose, which the patient is not supposed to go over. Your doctor may have allowed you to fill a day or two early but I would make certain that he wanted you to fill that way for more than a month or two because the insurance and the pharmacists will monitor that.
    Both of them base a prescription on a 30 day supply, so if you will on March 1st this month, and your new prescriptions would be due on the 31st. They will go back at the last 6 months of fill dates, and if you filled early by two days each month on the previous 6 months, you should have enough meds to last an additional 12 days according to their calendar, so if you try to fill again , before those additional 12 days are up, they may very well refuse to fill the script and contact your doctor.
    Most PM doctors who want their patients to build up a bit of a back up supply, usually want their patients to not take a pill per day , for a few days to build up a bit of a nest egg in the event of an emergency, but not by filling early because that sends up red flags in the databases , especially when it occurs repeatedly.
  • I have a hard time with a lot of medications so my pain docs have done a lot of experimenting too. For me (you might be different) Oxycodone is far more effective with a little Tylenol (250-350mg) I was told that the guide for Acetaminophen is 3000mg per day but a lot of doctors would like that lowered again too 2000mg so I never take more than 1500mg per day. I've also read somewhere that caffeine helps with the absorption. I can take a lower dose but get more relief by combining.

    I think the date you can fill depends on your insurance company & the pharmacy. I know someone who can only get her prescription filled on the day it's due. One month the 30days fell on a Sunday & she was on the telephone trying to talk sense into her insurance company for hours to no avail! In the end her doctor wrote a prescription for a different strength & because it was a new prescription she could fill it early on the Friday. Crazy! I usually fill my prescriptions 3 days before they're due & I've never had any problems.

    My topical cream numbs the surface & a little way in. It doesn't reach that deep bone pain. It helps a little. It works great on the arthritis pain in my finger joints. I hope I'm explaining this ok. My friend had a similar cream but lower amounts of ketamine in particular & she didn't find it effective. I just wanted to mention this before you decided to pay out of pocket for it. Mine's labeled - 150 Gm KETA10BAC2CYC2GAB6LID5 CREAM (that one just rolls off of the tongue..catchy name!)

    It breaks my heart when I can't do things with my kids because of this bloody pain. You & your doctors know what's best for you & the quality of life you share with your family shouldn't be influenced by 'public opinion'. Many of the treatments available for chronic pain have side effects it's up to you to decide if the results are worth the risks. Take care of yourself ;-)
    Osteoarthritis & DDD.
  • Just in case, you didn't know, I translated your cream name for you-
    150 grams Ketamine 10 mg, Baclofen 2 mg ,Cyclobenzaprine 2 mg, Gabapentin 6%, Lidocaine 5% in a cream base.............LOL
    My friend uses a similar one but different amounts of the medication than in yours and she swears by it......in fact, she was able to give up on the gabapentin that she was using by mouth and uses the cream twice a day instead and is far happier and has much better results with the use of the compounded cream.
  • It's hard to describe how the compound cream feels on my back..it completely numbs me but only a little way in. It's the weirdest feeling. It half works, half doesn't...or more like 1/5 works..you know what I mean? I tried Gabapentin for a couple of months & it did nothing but make me really sleepy ;-(

    Sandi. You said earlier not to collect your prescriptions early. That made me think.. I take exactly how many pills I should each day. I usually pick them up early each month but there have been times I've collected late & once I nearly ran out because we got snowed-in. Are you saying i should always try to collect my prescriptions on the day or I could get in trouble with my insurance company? I never knew it mattered so long as I followed prescribing instructions on how many to take each day & when. (my doc writes them a week before my prescription runs out)
    Osteoarthritis & DDD.
  • I've been filling mine early on and off for 8 years. I'm just now getting problems. The reason i fill early is so i have back up meds during the month....which usually get used. We do this becausd I'd rather not raise the dosage of my meds. My doc has been very good about everything. Anyway, there's noway i have years of extra meds laying around? That's not really how it's been working with me .
  • I think that we all, at some point, hate the idea of having to take narcotic pain meds just to be able to function somewhat normally... Well, we (Chronic Pain Sufferers) don't live a NORMAL life... We suffer, not only with the physical pain, but with emotional pain. I know that just going to the pharmacy is a HUGE ORDEAL... and parking in a Handicap Parking Place seems to make other people think they can judge me... It is a horrible life and we have to do what we can to live in this life. I don't feel guilty anymore because I "Get To" park up close because the parts of my life that I have lost are just not worth the extra 50 feet between me and them...
  • I have been using Voltaren Gel for five years and it has been very effective. Depending on the weather, there are days that my pain medications don't work, and the Voltaren will take the edge off. I also have days when the Voltaren is enough. (I too, would like to cut back on the pain medications.) The only draw-back is the cost. Rx required and there is no generic.
  • sandisandi Posts: 6,343
    edited 03/08/2014 - 7:13 AM
    (prescription monitoring programs) track each prescription of scheduled medications, what date they were filled, how long each prescription is supposed to last, as well as what doctor prescribed it.....I was told by insurance companies, that they base the dates you are due for a fill on the last 6 months fill dates.....assuming that the medications are the same each month.
    Assume you fill on Jan 1, Jan 27 , Feb 27, March 25, April 22, and finally May 23
    The Jan . 1 fill should take you to the end of the day on Jan 31.......but you filled the new prescription from your doctor on the 27th- 4 days early . Then in February , you see your doctor on the 25th but you fill the prescriptions on the 27th ( you aren't due for a fill until March 4)- you now have the 4 days early from the early fill in January, plus the 5 days early you filled in February so that is an extra 9 days of medications you should have.......if you try to fill again early in March , say on the 25th, the insurance company may not let you fill and it will set off an alert with the pharmacist and with the PMP program in your state that you are filling early on a regular basis and most likely will result in a phone call to your doctor....and questions from him when you do see him.
    It is one thing to fill a day early, most insurance companies allow for that, unless you do it every month, then they just take the additional day of meds and add it on at the end of the month , for each month you do it....eventually it will catch up and insurance will refuse to pay. Those who try to circumvent the insurance denials usually wind up being told they can not pay cash for the prescription to bypass the PMP protocal or the insurance denial....
  • That makes perfect sense, thank you! Often I find myself blaming my ignorance on the fact I'm from a different country but I bet there are others out there who didn't realize that the system works that way. I know that we (& our docs) are under so much added scrutiny these days. Thank you ;-)
    Osteoarthritis & DDD.
  • That is why I am here...to help explain things...
  • Hey all, so I have an update. I went and saw my doctor on Friday. I practically broke down and told him I was miserable. The pain was worse and it was getting to me physically, mentally, and emotionally. Well we discussed it and we decided to change my meds a little. We went up a little higher on the dosage and he added a muscle relaxer for nighttime. I'm tired of the medications but I've realized that it's something I need right now to function. I have a little daughter that's depending on me 24/7. Anyways, I must say the last couple days I have felt a lot better. Not just physically, but also mentally and emotionally. I'm still going to try some of that topical cream. Guess it's worth a shot. My doctor is also taking my X-rays and MRI to some conference he has to talk to some other surgeons and see what they think. As of now, I'm against another surgery... Especially since it would most likely be a fusion. I know some of you have had fusions.... What's your experience with them? Was it worth it?
    I know the whole filling early topic came up. Hopefully I won't run into that problem anymore now that my meds are working better. That was just a huge stress factor for me. I'm so grateful I have a doctor that listens and is understanding. He has been a lifesaver for about 8 years now.

    Thanks again for the feedback. This actually really helped me feel better about having to take medications. There's not many people in my life that understand what I'm going through.. So thanks for all the support.
  • I'm so glad to hear you're moving in the right direction! It's really hard when you've got little kids. In so many ways their little smiling faces make life worth living but I too share the guilt & stress of trying to be the best Mum I can be despite everything that pain throws at us ;-)

    I take the muscle relaxer Tizanidine (less soporific than cyclobenzaprin for me) throughout the day. It's just as important as narcotic medications for keeping my pain manageable. I hope it really helps. Once I had tolerable pain levels it was so much easier for me to step back & really concentrate on all the aspects of my life I had to organize to keep my 'little train running'. Depression can easily derail me. Watch out for it! Being a Mum brings its own stresses if you ever need to chat Mum to Mum feel free to PM me ;-)

    Having my case presented to a board of surgeons & PM docs on occasion has given me tremendous piece of mind. They don't just discuss surgical options so you don't really need to stress about fusions yet. I think it should always be a last resort for structural necessity. If the time comes get several opinions & if it needs to be done, it NEEDs to be done :-(

    Having a caring, supportive doctor makes so much difference doesn't it? It's the nature of forums that a lot of people write only about the problems & the bad. It's good to hear from someone else who feels like a weights been lifted after an appointment. You've got a good one there..keep hold of him! ;-)
    Osteoarthritis & DDD.
  • Englishgirl, that's actually the muscle relaxer I was prescribed. I like it so far. I actually slept better with that than my ambien. I can't imagine taking it during the day though. Made me very tired.
  • The drowsiness will wear off in a few days to a week.......like any medication, there are side effects and tizanadine is one that causes drowsiness in the beginning.
    Give it a few days and you will find that you aren't so drowsy anymore.
    Glad that you are feeling better.
  • JRP1122JJRP1122 Posts: 15
    edited 03/09/2014 - 12:10 PM
    Is tizanidine typically a medication people take throughout the day? My prescription says take at bedtime. Which I'm fine with. I have a hard time sleeping. I'll take an ambien which will usually last about 4 hours... unless my daughter wakes me up. Obviously I'm not going to take the muscle relaxer and ambien at the same time. Was just going to switch off as needed. I'm just glad my days have been better pain wise. Makes the nights better too.
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