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Poll for people in treatment for Chronic Pain- How much pain do you still have, and what do you do t

happyHBmomhhappyHBmom Posts: 2,070
edited 06/11/2012 - 8:48 AM in Chronic Pain
You can also discuss your treatment if you wish.

I'm in pain management. I use 25 mcg/Hr Fentanyl patch (I'm very sensitive to the stuff!) and 3/day maximum Norco 10/325 along with Cymbalta and Topamax to manage severe debilitating pain caused by a collapsed burst fracture.

The Fentanyl reduces the overall pain level from 7-8 down to 4-5 which is fabulous. If I am pretty sedentary I can spend most of the day with mild/moderate pain which is easily dealt with by laying down with my heating pad (my bed is now known as "my office" to the kids, as any long talk or homework help needs to be done there, I can't sit up for extended periods).

Unfortunately, even with B/T meds, I cannot do things that would actively put pressure on the nerves, such as sitting in a "bad" chair, standing in place, bending, or twisting. I can walk short periods. Increasing my medication level would make me more drowsy, so would not likely improve my functional capacity, so this is a pretty good outcome, but I really am hoping that the worst of it is fixed by surgery.

I use guided imagery, relaxation, and heat to deal with the pain when my meds don't work. They work very well for me, I'm usually able to get my pain level down significantly.


  • dilaurodilauro ConnecticutPosts: 9,836
    I think the first thing that needs to be identified is the whole concept of Chronic Pain. The pure definition states that pain that last over 6 months is considered chronic pain. I've read some articles that say 3 months is long enough. But I think the key is distinguishing between Acute and Chronic

    That being said, I've been dealing with Chronic pain for a long time now.

    Considering that, some things are almost a given:

    1 - I will have some level of pain the rest of my life
    2 - I will need some type of pain medications to manage this.
    3 - I will be in/out of Physical Therapy time to time
    4 - I will always need to be totally aware of my situation and act accordingly.
    5 - I will always be on the look for new articles, treatments, plans to help battle chronic pain.

    A simple example of Acute vs Chronic. My surgeon who recently did my shoulder replacement has been providing me scripts for Opana. His objective is to
    take me down from the original amount to zero. Then he wants to pass me back to my Pain Management doctor. On the other side, my Pain Management doctor understands that some level of Opana (or something else) will probably be my lifelong treatment.
    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
  • As Ron has said. Life long requirement. Since I have had this kind of issue for decades, it is unreal to expect to remove all discomfort - forever. That is just unrealistic.

    I have Chronic and Acute, depending on situation and circumstances. I have a cyclic level from about 3 to 8 - on my pain scale. I took the generic and re-wrote it with things that were important to myself. Activities and situations, needing assistance, ability to work, or not. These kinds of things.

    One thing that does come to mind - for myself - was a sense of peace, when I realized that this might be the best - that it will ever get. It gave me some measure of control and at the same time, did provoke a grieving of the situation. That was years ago, but it is still fresh in memory - to consider that myself.

    Take care
  • As Ron has said. Life long requirement. Since I have had this kind of issue for decades, it is unreal to expect to remove all discomfort - forever. That is just unrealistic.

    I have Chronic and Acute, depending on situation and circumstances. I have a cyclic level from about 3 to 8 - on my pain scale. I took the generic and re-wrote it with things that were important to myself. Activities and situations, needing assistance, ability to work, or not. These kinds of things.

    One thing that does come to mind - for myself - was a sense of peace, when I realized that this might be the best - that it will ever get. It gave me some measure of control and at the same time, did provoke a grieving of the situation. That was years ago, but it is still fresh in memory - to consider that myself.

    Take care
  • I rarely, if ever, get my pain below a 4-5. I use the WONG-BAKER facial pain scale becaue it seems a more accurate pain measure to me.
    I think I generally hang out around 6-7.
    I take Oxycontin OP 20 mg, twice a day
    Percocet 7.5 mg three times a day for break thru
    Cymbalta 60 mg twice a day
    Nuvigil 150 mg in the morning to keep me awake
    Xanax .5 mg at night to help me sleep
    I use an ice pack almost every time I am sitting or lying down.

    It is funny how you adjust to live with the pain. I wish there was something else I could do. I am completely against increasing my narcotic pain meds because I am already a little loopy. I have pretty much given up driving except for very short trips (less than 30 miles)

  • I like Ron's post - just about says it all for me, especially his five points.

    At the beginning of my journey, I thought I'd be healed after my first cervical surgery. How ignorant I was back then - if only I'd known then what I know now.

    Now, 2-1/2 years later, like Centurian, I've come to terms, as has my hubby, that I'll most likely be battling chronic pain the rest of my life. I'm at peace knowing this because I know how to deal with it, expect it and having a good day is like getting an unexpected gift from a secret admirer.

    I know what's likely to set off a flare and avoid that activity or do it anyway knowing that I'll pay for it later. Unfortunately, my upper cervical area is taking a noticable turn for the worse, but I'm battling that with heat, some exercises I learned in PT, and sitting straight up in my recliner with my head supported, not moving.

    I'm not in pain management as my surgeon takes care of his patients for two years. He also knows that I'm having additional difficulties that I'll need addressed at some point in the future. So until then, he'll keep refilling my scripts.

    My pain levels vary greatly day to day and even hour to hour, but I understand that it will be my constant companion. I'm glad the days of grieving over all this is gone. Sometimes I wonder if that was the most difficult part of all of this - the grief you feel at losing your old life. But it's comforting to finally find your new one and be at peace with it.
  • Outofcontrol, getting my pain down to that level requires all of the tools I mentioned- including the nerve pain medication (Topamax) and the use of heat and relaxation- along with almost complete reduction of daily activities.

    Is it possible that some other tools could be added to your repertoire to lower pain levels? I do feel quite lucky to have found tools that work well for me.

    Different pain scales do make it difficult. I think what is clear is that we all live with come combination of moderate-severe pain almost every day, which we control with different tools. Our toolboxes can be added to over our lives to give us more ways to cope.

    But is it not true that no single tool (medications, heat, relaxation, reduction of activities, etc) can do the job alone? It is almost part of the definition of chronic pain that we need to approach it from multiple angles.

    I am very much looking forward to adding physical therapy back to my toolbox after surgery!
  • chronic pain for around 10 years with 4 back surgeries. i get up, take my first pill, watch news, drink coffee, shower and drive to work. work from 6:15 to 2:oo except when i have iep meetings which go from 2 to 3 or 4. come home take a nap, eat, go do whatever, rcia meetings now. come home more tv, go to bed then start same thing next day.i'll be probably be taking pain meds, oxy for the rest of my life also. are most of you on disability? sitting around all day would drive me crazy. no matter how bad my pain is, i still work, and keep life as close to normal as possible, which means travel, visit friends, go out etc. i don't talk to friends or relatives about pain or back problems. if they ask, i tell them. they usually say, are you still on those suckers?
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • LOL, there you go again Jon, conjuring that image of you and one of those big lollies!!!

    For me, meds, weekly nerve blocks, meditation and relaxation exercises, deep breathing, stretching, and heat, heat and more heat! All of these things, less the blocks, are things that I use continuously every day to battle my pain.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • dilaurodilauro ConnecticutPosts: 9,836
    Once we realize we now have to live with chronic pain, we need to put different plans in place to manage it.

    The easiest solution is just going to your doctor and have them up your pain medication dosage. That might work for a short time, but eventually (A) Your doctor will put a stop to that or (B) You will become a zombie, but the pain will still be there.

    Two things I often discuss on these boards

    (1) Pain scales - Almost all scales are designed to handle multiple purposes. No different from pain scales. Patients think if they give a high number (9 or 10) or even those that say 25+ think that they will get more medications and more attention. And those that give a low number might get ignored.
    I've had various colors or words to describe pain levels, right now, I am setting in for:
    The GOOD
    The BAD
    The UGLY
    You can get the indicator how a person feels just from those three.

    (2) Multiple Approaches - I am sure most of you have heard me talk about "The Blend" If not, check out our FAQ and look it up there. I do not believe that one source will address all the problems that a chronic pain patient has to deal with. Those type of solutions are more geared to people with Acute pain. But everyone is different. What works for me to manage my pain my not help another person. You sort of have to customize your plan, using your doctors, other resources and yourself.

    I guess if anything I wanted to say and have an impact for everyone is
    Take an active role in your pain management control
    DO NOT
    Just sit back and expect the medical field to fix everything 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
  • Terror, it is driving me crazy- beyond crazy! But I have hope of more activity after surgery, so I am clinging to that!

    Ron, I am very much with you. I hope we can share what we do, and somebody might find something new to try. But try you must- there is no grand fix. Only a thousand things that might or might not help, that you can put together into a lifetime strategy.

    One thing about inactivity is that it's a vicious cycle. Your spine needs muscles to support it, and those muscles need exercise to remain strong. I always wonder whether I would be having this episode of instability if I hadn't battled so many health issues earlier this year and lost so much strength.

    But eventually this surgery was going to have to happen, so now I'll get my bolts and rods and my spine will be straight again, so I can go back to physical therapy and try to re-strengthen my body.

  • I'm on the Fentanyl patch 25 with up to 3 oxycodone for breakthru.I still work a very physical full time job.
    I've had 3 neck surgeries in the past 10 or 11 yrs.I hurt every minute of every day but I don't let many people know.
    When people ask me how I am I usually just say I'm good.
    I still try to play golf at least 5 to 10 times a year knowing darn well I will pay for it later.But I can't sit and dwell on how bad I feel.
    Some days I wish I could just sit in my recliner with the remote,but my wife doesn't work and nobody else will pay my bills.
    I found out a few years back that I'm Bi Polar,so there's more meds.I take Limictal and Seroqual and its worked wonders for me.
    I guess what I'm saying is I take my meds and try and live a normal life,as hard as that is sometimes.
    Peace to you all
  • I just turned 38 but my kids are older due to the fact that I got married at 18. When I was around 7 I was in a car accident with my grandfather where we hit black ice and went off a bridge and the car impacted on its front end. I wasn't wearing a seatbelt and was found in the area where your legs are. From the age of 12 I have had chronic head pain. I dealt with it and was told everything from they were Migraines to I was allergic to Caffeine. About 18 years ago I took 3 different types of over the counter of headache pills and then realized I burned the lining of my stomach. From that point it was Rx and doctors orders.

    I have been on almost everything. The worse was Fentanyl 100 mcg patch I actually lost time and dont remember anything. Thank God for my Wife and 3 kids. My pain has become so bad I can't do anything and that has pushed me into depression which I am being seen for on a weekly basis. I try to meditate and once I reach deep meditation I have some good success with pain management. I have just been taken off of Morphine which I was taking 260mg a day but I am continuing with Vicodin HP 4 times a day with Robaxin 750mg. All this along with Topamax and antidepressants. I have started seeing a new pain doctor, a Neurologist at the Cleveland Clinic and on top of it all I recently found out that a old MRI revealed that my disc between C3 and C4 is gone and its bone on bone.

    Being in this situation is so aggravating because you want your family to have a life but you often feel like you're holding them back. The doctors tell you to be patient and hold on... but what else can you do? So day to day you live minute to minute dealing with it however you can, at least I do.
  • It is funny about the different pain scales for different people! I like the pediatric one--it just best says what I feel.
    I guess I could try to sit and relax and maybe it would not hurt as much. I can't, I have to try to do things, and many times, I do way too much. Sometimes, like today, it has taken me most of the day to bake a few batches of cookies, cook dinner and clean up the mess. I still have not cleaned up and showered yet today. I will shower soon and put on clean jammies and go to bed.
    There are so many times I get so down about things and want to be back to the way I use to be. I could work so hard, all day long, and it never got to me. I am finally getting over my depression, I have accepted the Oxycontin and Cymbalta. I am looking for solutions on my own.
    I am not giving up!
  • Learning to let things go is the hardest part. I think one of my first posts here on Spine Health was about guilt- because I can't do it all.

    But trying to be the old you is really an exercise in failure. You will do too much, suffer for it, recover, then do too much again.

    Instead, budget your pain-free energy and time as a precious resource. That doesn't mean you won't occasionally overdraw and need some recovery, but at least the day-to-day existence might be more pleasant.

    Adjust your ideas for what "needs" to be done. Was this something the old you "needed" or something really necessary to someone's happiness or well being? Take time to relax and deal with your body.

    Dealing with chronic pain is a choice and something done proactively, not reactively. Your family needs you content and happy a lot more than they need homemade cookies. But getting to that life takes some work.

    I ended up doing a run of counseling to deal with it, and boy did I ever need it. My counselor was the one who introduced guided imagery as a relaxation tool- a google search will provide CD or downloadable MP3s from different practitioners. I was so skeptical but willing to try anything- and was astounded at how well it worked. It might be something you could consider as well, if you can carve out the time to do it :) It is a low cost, low risk thing to try!

    I have also tried more and different medications. I have not found them to be much of a solution and they have been very hard on my body. I have had multiple injections, which were temporarily helpful. I have done (and will do again, for my SI joint) nerve ablations from L1 on down.

    I would like to try trigger point injections and aquatherapy along with some other exercise modalities, when my spine is stable.
  • HB,

    Great thread idea. My spiney journey is based on a life of hard activity. 11 years of competitive gymnastics, a drunk rear ending me in 81 (not to bad on the pain with that one), crashing a helicopter in 85 (very bad pain whole spine on that one), and a drunk hitting me almost T-bone in 02 (very painful neck wise for this one). Then too my life's career, jet and helicopter pilot (wearing night vision goggles with a helmet), and chasing bad guys.

    Until I was around 41 (48 now), chiropractor and OTC kept me in check. After 41, the spine journey began. I prefer to use your "Comparative pain scale" personally. Before my first surgery, I wasn't given much in the way of drug treatment due to being on flying status, so 7-10 (10 in 2 or 3 second zaps) 7 was more common. Drove me nuts! After my first fusion, I was pretty well down to a none to 2 level for just over a year.

    Had to have another fusion (adjacent level failure), and much of the symptoms came back, to include a new level, and symptomatic internal to the old fusion, as well as C2/3. C2/3 is changing of late, and if I have my head up, or turn it when up, and easy 8+ - yeah I know, don't do that!

    Except for the issues changing at C2/3, Lyrica has been great at keeping me between 5-7 depending on what activity *I* did to change it. If the pain (mechanical) goes a muck, then I have Darvocet (getting it changed tomorrow since the ban) which keeps things in check. Like everyone, there are days NOTHING helps, but thank goodness those are not very frequent!

    Otherwise, rest, ice/heat, swimming when my pool temps are up, gentle stretches, TENS/EMS and now too Lidoderm patches - still trying to find the right spot with them!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Well tonight is not a good night for me, I'm here with my heating pad and not feeling good- I'm about to turn on my audios and zone out.

    I'm glad so many people have shared.

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