new here...is pain medicine causing my pain??

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misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 3/17/2012 12:36 AM (GMT -6)   
Hi Everyone!

I am not new to this site, but I am new to this particular forum. I usually post in the Lupus forum, but I think this particular question might be better answered here....Please bear with me while I give a little history...

I was diagnosed with Lupus with kidney involvement and antiphopholipid antibodies in 2005 when I was in college. I have suffered from two deep vein thromboses (one in each leg), kidney failure, pulmonary edema, shingles and costochrondritis....

Thankfully, I have mostly recovered from all of these things, and my labs have been better than ever. In fact, except for having positive double stranded DNA, almost all of my blood tests are within normal ranges.

The only problem that still lingers is my chronic back pain. My upper-middle back just aches constantly and intensely in my muscles. So much so that I often cant stand up long enough to do the dishes without having to take a break, and sometimes cannot do more than just lie in a ball on my bed (and sometimes even that is uncomfortable). My doctors do not have any explanation for the pain and even my Rheumatologist says that it is not related to my Lupus since my labs are so good. I have tried acupuncture, massage, heating pads, lidocaine patches, physical therapy, and a nutritionist.

The only thing that I can really rely on to live a relatively normal life is pain medication, and I have been taking 5 mgs of oxycodone 3x daily for the past 6 years. In the past several months, however, it seems that the pain medication does not work as well as it used to (or my pain is getting worse) and my doctors have had to increase my dose to 10mgs 3x daily and I also pair it with Tylenol (since I cannot take NSAIDS like Advil). I have had x-rays and my doctors cannot find a definitely cause/answer as to why I have pain so I was wondering if it was possible for this medication to actually cause my body to feel like I need to take it?

I am wondering if it would be worthwhile for me to test this theory by weaning myself off the pain meds and seeing if the pain still persists some time after I stop taking them? The only problem with this would be that if it is not successful, I will be in terrible pain and unable to perform my daily activities. I kind of want to try it, but at the same time I'm scared to be living in any more pain (because I am already living in constant pain, the medicine just makes it a possible for me to be more active).

What should I do??

Thanks in advance to anyone that reads this!

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 3/17/2012 4:01 AM (GMT -6)   
Hi Misscali,

Welcome to the CP forum! I am certainly no Dr and haven't been CP long enough (seriously about 4 years now, but a lot of lesser CP before) to give great advice on this one.

I'm very sorry that you hurt so badly, but I'm afraid this one would have to be discussed greatly with the prescribing physician if it were me. The reason I say that is because this physician obviously believes in you and your relationship, or they wouldn't be prescibing pain meds like they do. If you "go off the meds" on your own, you risk a drug test of some kind that shows you are not taking the prescribed meds and then you will NOT be able to get anymore if you need them.

I would certainly discuss the feelings you are having with the prescribing Dr though and perhaps they can change the type of med to a different one. If this one is causing a problem then the problem should go away... I guess. At least, that seems logical to my non-medical mind.

Anyway, I hope you find relief from your pain. It is obviously real and almost everyone here can certainly understand pain....back pain is so horrible!

Good luck!
Failed TLIF L5-S1, Miltiple Bulges/Herniations, Scoliosis, Pituatary Disorder, Fibro, Failed Bladder Surgery, Failed Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (now trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendonitis, Adult Onset Flat Feet, & Vision Issues

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 3/17/2012 4:52 AM (GMT -6)   
Miscali, I have thought the same thing myself at times. In my own personal experience in doing a short term "experiment" of not taking my pain medication for 36 hours, my pain levels were significantly higher.

There's really three things to consider here IMO:

#1. In some rare cases, pain medications can actually cause hyper-anglesia which can cause additional pain.

#2. Being on opioids (and to a lesser degree NSAIDs) for so long, your body is used to handling a certain amount of pain in a dulled out fashion. The body can produce less of its own endorphins as a result of pain medication treatment. Also, even after the main effects of the oxycodone wear off, residule amounts remain in your system, still providing residule relief.

#3. The withdraw effects from not taking the oxycodone themselves can increase your existing pain

This is something you really need to talk with your doctor about to determine whether this is a good plan and if it is, how to procede with it. Please don't take drug holidays in the absence of medical advice like I did. Best wishes and good luck on your journey :)
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures helped for months, but pain is up and im having the procedure done again. Currently on 75 mgs of Nucynta (tapentadol - A MOR + NRI) 2 to 3 time per day and Soma 350 as needed.

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 3/17/2012 10:38 AM (GMT -6)   
no, absolutely not. that theory has been disproved. the cure is not the cause.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 3/17/2012 12:31 PM (GMT -6)   
Hi Everyone!

Thank you so much for your responses and advice, I really appreciate it.

Actually (I deleted this from my original post because it was already a little long winded), I am apprehensive about telling my primary care doc about this idea because I am not very close with her. I suspect only reason they still prescribe me pain meds is because that is what my previous doctor did, and the doctor before them. I was first prescribed about 5 years ago (when I was back east for college) by my Rheumatologist after I had whole kidney failure, DVT, shingles episodes. I still had back pain at the time but it was kind of masked by all the other pain I had all over my body.

Once I graduated and moved home I had to get a note from my Rheumy saying that I have always taken oxycodone as prescribed and do not abuse them in order to get new scripts filled here. My first primary care doc (who was only a Resident) kind of forced me to go down to taking 5 mgs twice a day for almost a year but the pain was really unbearable and finally, when I kept calling in my scripts early, one of the Attendings made the decision to the increase it back to my original dose of 3x daily.

Every time I go to the docs they are trying to get me to get off oxycodone (probably because they don't know the cause of the pain). My primary care doc is graduating soon so I havent even been able to see her lately and it was a different doc (still only a Fellow) that allowed me to go up to 10 mgs daily, but I think their ultimate goal would be to get me off pain meds all together. Anyways, this is why I do not want to tell my primaries about my idea, because I'm afraid if I get off them completely, it will be hard for them to prescribe me again if I really need it.

Although I really would like to live a life without pain medicine, I would also still like to be able to live my life! and currently this is only possible with this medication.

My doctor has also suggested trying other drugs like Gabapentin (even though I dont have nerve pain) and some others meds that she says helps people get off opiates, but I really dont want to try a new med (because I am on so many others already)

I really appreciated all of your insights, and I know you said not to do this, but I had already been trying to decrease my dose (not get off completely or cold turkey or anything)...but I have been taking either 2 or 3 pills a day for the past week (instead of 6). Its pretty terrible. I've been having night sweats. I couldnt even sleep last night because my back was hurting so bad. I just lied there for hours with tears rolling down my cheeks and listening to the Shins. Until finally I took 2 benadryl. lol.

Should I talk to my doc about maybe putting me on a different narcotic??

Seems like my tolerance for oxycodone increases quite quickly and even with my normal dose the pain comes back sooner than before with less relief.

Thanks again in advance, and I apologize for being long-winded (again)!

xx

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 3/17/2012 1:10 PM (GMT -6)   
Hi Misscali...

Sorry to hear about your situation...

I'm a bit confused with your dosage....You say you are prescribed Oxycodone 5mg....3 times a day....

But this last post you say you have weaned down to taking them 2 to 3 times a day instead of 6 a day?

Have you normally been taking more than prescribed and then running out early towards the end of the month?

This alone may be the cause for your roller coaster pain..

I think we all have to make choices for ourselves and yes, it can happen where our bodies get better or our pain lessens and we don't know it if we stay on the same amount of medication.

Through the years I have always worked with my Dr. in making sure I am taking the absolute least amount of medication to lessen my pain.

The other key is making sure that the opiate is not your primary way of treating the pain. There are dozens of other modalities to help with our pain depending on the cause..

Do they not feel your lupus can be helped by Corticosteroids or Immunosuppressives, or even Aspirin to help since you can't take NSAIDS?

I also wonder if you have ever gotten an MRI to see if there is anything going on in your spine like disc issues if you say you have trouble standing for any length of time...

I would certainly suggest you change Drs. to someone you do trust and can talk to about anything.

As someone else mentioned...if you start changing your medicine dosage on your own...than if they choose to do a urine test and you come up with less medication or negative...than this will cause great trouble down the road.

Also...if you go down or even off of meds....the Dr. will obviously notice as you won't be asking for the same amount of Oxycodone or even telling them you don't need anymore. If this comes out of nowhere to them...they will wonder why you are not including them in your decisions.

To me, any Dr. would be happy to help you take less medication if you can do that.

I live with a 5-7 on the pain scale each day...this is with my medication and all other modalities from exercise, yoga/stretching, PT, aqua therapy, injections,massage, TENS unit, acupuncture, counseling, muscle relaxer, sleep medicine, eating all Organic and avoiding foods that cause inflammation....

Any one of those on their own do not take away my pain....it's doing all of them daily,weekly, or monthly (depending on the modality).

But all of them added like building blocks are what keep my pain at the range I listed...

I would just urge you to rethink speaking to your Dr. about your concerns...Just telling them that you want to see if you can take less medication...or try a muscle relaxer...or seeing what else you BOTH can come up with.

I do wish you well...
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) Oct 2006
 
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 3/17/2012 1:21 PM (GMT -6)   
Hi MissCali and welcome to the chronic pain forum. I totally understand your reasoning on not wanting to mention this to the dr. You may not be aware of all the new rules that is in place for drs treating chronic pain patients with narcotics. Nearly all PCP drs have stopped prescribing because they are so closely monitored and a lot of drs are just plain scared. I would be willing to bet between this and the fact its a narcotic involved this is why they are telling you these things. Eventually, I would not be surprised if they stop writing the narcotics for you.

Anytime a person takes a medication for a prolonged period of time their body becomes use to that dosage and needs it and usually the person will need an increase or change of medication because of tolerance issues. You have lasted a long time on the same dosage but it sounds like you really need a change.

If you have been taking this medication every day for the past five years, then you would probably do much better on an extended release pain medication with a short acting pain medication for what is called break through pain. The break through meds are to be used when the you have pain spikes not handled well enough by the long acting medication. This is where a good pain mgt dr comes into play. They are better trained to treat pain since this is their specialty. With the short acting meds all you are doing is clocking watching and just chasing the pain around. At least this is something you could talk to your dr about.

Anyway, these are some things for you to think about. With the reduction of meds I am not surprised that you are feeling rough. Try soak long warm bubble bath soaks, anything to help get your mind off of things.

Please keep us posted on how you are doing. Take care.
Moderator, Chronic Pain Forum & Psoriasis Forum

Post Edited (straydog) : 3/18/2012 1:56:47 AM (GMT-6)


misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 3/17/2012 3:25 PM (GMT -6)   
Hello!

Thank you all again for your responses, it's really nice to get some opinions and answers to my questions

Snowbunny- So sorry for the confusion, I should have been more clear...When I said I take 2-3 pills a day rather than 6 it is because I am prescribed 5mg tablets. My previous dose was 5mgs 3x daily (90tabs/month). My dose was recently increased to 2 tabs 3x/day (180tabs/month). This past week I have been trying to decrease it to only taking 1 or 2 tabs a day even though I have not run out of my script. So rather than taking 10mgs 3x daily (6 tabs/day--as prescribed) I am taking only 10 or 5 mgs once or twice a day.

I forgot to mention I have tried muscle relaxers (Flexeril) which did not help at all...

I take low-dose(baby) aspirin as part of my medication regimin (because I developed a DVT while taking Warfarin) so I don't think any additional Aspirin will be allowed since it will thin my blood even more. I also take Cellcept, prednisone, lisinopril, plaquenil, fish oil, calcium and vitamin d. In fact, my Rheumy is also decreasing my steroids based on my labs!


I think now I will definitely talk to my doctor about what do to. Unfortunately I do not think I can choose who my primary care doctor is because of my health care plan, I am kind of just assigned someone. I do want to ask them about something that has an extended release but honestly some of the words like Oxycontin and Fentanyl really scare me, and I also have the fear of looking like a some sort of "drug seeker" which I'm sure many people with chronic pain have experienced.

A pain management clinic has been suggested by my doctor but she sort of said it should be a last resort, since they mostly only do injections...and I would rather not go down that road, especially without the guarantee that it will help. I have been poked, prodded and operated on too many times already and I only just turned 25 :(

But you're right, Straydog, I am just counting the hours and chasing the pain right now. It's so hard to stay ahead of it when you don't want to take it to begin with! I took a really hot shover and let it run for a while on my back and provided a little short-lived, partial relief.

I try to exercise at least once a week by having a tennis lesson, but I know more is needed. I will also try to try to do maybe 15-20 mins of walking or yoga if I can, as I'm sure this can possibly help as well.

Thanks so much!!

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 3/17/2012 5:20 PM (GMT -6)   
Thanks for explaining it more...I missed that one line in your other post....

The key with talking to Drs. is to approach them with facts and figures....Don't ask him for certain medications when referencing pain meds....Just tell them that you can't do certain things....what time of the day the pain is worse or better....etc.

As someone mentioned...keeping a pain journal is a great idea and then you can show the Dr. this and then let them suggest things for you. It will definitely raise red flags for someone to say, "I want Oxycontin"....it's all about saying that it feels like you are chasing the pain all day....

Also...there are at least 3 or more other types of muscle relaxers out there....Robaxin and Skelaxin are two of them....

Again...keep in mind that it's not about one medicine that is going to take all the pain away...It's adding everything together...so even if a muscle relaxer helps even a tiny bit....added with the opiate and other ways to lessen your pain....you can get to a decent level...

I take 5 different type of medications along with doing all the things I listed and that gets me to the 5-7 on the pain scale each day....

It's finding the right combination of medicine, narcotic and non-narcotic and other treatments that will work for you.

If you are capable of doing tennis....that is amazing...I was thinking of something more like just walking each day....or swimming....these are very low impact and can be done daily to keep you loose....

Thankfully I have a dog who kind of demands me walking each day! LOL...I use Audible to download books to listen on my phone while walking and it makes the time go by very quickly....

It sounds like once you find out what level of Oxycodone you can get by with each day....than hopefully discussing better managing of the actual pain as in, not chasing it all day with the ups/down....then maybe they will allow the Oxycontin at the same dosage....

There are also other long acting medications that work well in case your insurance or Dr. is more comfortable with that....I happen to use MSContin and it works extremely well for me...

We can certainly empathize....and yes...it's harder when you don't have a specific thing like a broken bone right in front of the Dr. to show them your pain....but the best you can do is communicate where it hurts...when it hurts the most....and what you can do together to help manage it...

I hope you can talk with them soon and work something out...

Keep us posted!
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) Oct 2006
 
 

Equestrianne12
Regular Member


Date Joined Dec 2011
Total Posts : 63
   Posted 3/18/2012 9:57 AM (GMT -6)   
that upper back pain is awful. I know it when it siezes up it takes forever to settle it down. my doctor says once it starts to seize and spasm it can take months to get it to settle down. here is my method...take a valium. it works better than the pain pills for me because it relaxes the muscle, when I lay down it is with a heating pad under the area I lay flat on my back with my knees elevated. try and sleep that way even if you have to put a pillow under your knees. my other trick is a tennis ball once you have the muscles a little looser from what I previously stated. lay on your back on the ground...hopefully you have a carpeted area at home, put the tennis ball on the floor and lay on your back same way with your knees up. it will hurt like crazy but it allows you to get the worst points of the back without paying for a massage. last but not least my arthritis doc makes me do an exercise that hurts like no one's business but really really helps. press into the pain. when I say this I do not mean stretch forward and open those shoulder blades I mean press into it so bring your elbows towards your back. it tricks your back and stops the spasms but boy does it hurt. I hope some of my method is effective for you and hope your pain stops soon. one last thing, the pain pills make it easier to over extend your back even for a split second to get you into this mess...they do not take the spasm pain away but they are not going to hurt it. I over extend my crooked back which is what gets me into the spasm usually lifting something or sleeping wrong. feel better!!!!
also I know that pain you mentioned barely being able to stand when you do dishes it is the same exact pain I get which flares up more when my hormones go nuts;) I have a small back brace I wear when I ride my horses and do house chores which require sitting or standing long periods of time, you have got to get one they go under your breast area and over your shoulders and pull that area together similar to the exercise I mention my doc has me do. do not wear the brace when you are in active spasm but to prevent them in the future. I use mine all of the time I am so sorry youre hurting I know this pain and it is awful. try to get valium from the doctor if you can its way better than the pain meds and muscle relaxers if taken in the correct dosage and the tennis ball on the floor will hurt and make you feel bruised but counter it with the heat pad and work out the spasms and the pain will change out.

Post Edited (Equestrianne12) : 3/18/2012 9:03:22 AM (GMT-6)


spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 3/18/2012 5:27 PM (GMT -6)   
for some reason oxycodone can cause a certain hyperalgesia and a anxiety syndrome. it has happened to me even is i get the dose up very high and 90% of patients i have talked to describe the exact same. maybe a CYP2D6 liver enzyme lack which makes a poor oxycodone metabolizer causes this issue. have you had experience with other full agonists like hydromorphone, morphine, or oxymorphone? if so were you able to have the dose titrated in to the level you need? also some strategies are out there to combat this; NMDA/glutamate receptor antagonist like ketamine, dextromethorphan, propoxyphene, magnesium, and some plant based compounds can reverse opioid tolerance while using opioids. maybe a addition of a potentator to your mix could help, such as carisoprodol, hydroxyzine, or clonidine.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 3/18/2012 8:06 PM (GMT -6)   
Thanks, All for your replies :)

Snowbunny - you are so helpful, thanks so much for your support!! Those are good ideas about how to be honest with my doctor and keeping a pain journal is something that I hadn't thought of before...I used to keep a food journal with my nutritionist so I don't know why I never thought about having one for pain! Usually by the time I go in to see my doctor it is hard for me to remember when the pain was at it's worst and therefore hard for me to describe to the doc. I would never go in there asking for certain kinds of meds, just because I would trust the doctor to prescribe the correct medication to me rather than me suggesting something, but then again, it would probably help a lot if I could be as descriptive and specific as possible. I agree with you about using all different modalities and not just relying on medication. I already have a tiny bit of osteopenia from taking high doses of steroids, so I thought having some impact like playing tennis once a week would strengthen by bones. I also try to do some time on my elliptical if I am not feeling too fatigued. I don't have a dog to walk but I have been trying really hard to get one of my cats on a leash so maybe he'll let me walk him around the block one day :P

I also have been working with a nutritionist and doing a gluten, dairy, soy, corn and potato-FREE diet and try to eat organic as much as possible. I think it might be worthwhile to also ask my doc about some other muscle relaxers, even though my ultimate goal is to be on as few medications as possible. I think starting tomorrow I am going to go back to taking my prescribed dose because the pain right now is very limiting, but one thing I am wondering, if I am always taking pain medication, wont it be hard to really tell when the pain is at its worst or things that trigger pain? I know that even with pain medication I often still have pain, it is just more manageable with meds, but I just feel like my pain journal might not be as accurate as it could be if I am always treating the pain.

Equestrianne - Thanks so much, those are some great tips, I will definitely have to try some of them. One thing though, how do you know when you back is having spasms? Sometimes my pain is much more intense (especially when it still hurts lying down!) but it never really feels like I am having spasms, just some days are more stiff and achy than others. I do have a back brace that pulls my shoulders back, I just never really use it, haha. Also, with the tennis ball, you said it feels like you are bruising your back? I take blood thinners along with low-dose aspirin and fish oil so I actually do bruise extremely easily...do you think this is something I can still do without actually bruising myself? Also, do you know if valium works in a similar way as Xanax? I am already prescribed Xanax as needed for anxiety but I rarely take it, so I am wondering if I should try this before asking my doc about Valium. I'm so sorry you have a similar pain, but its great knowing that someone can relate!

Spinal Soldier - yes, that was my initial concern...whether or not taking pain medication for so long has actually caused me to have a hypersensitivity to pain. Having been taking a lower dose of pain meds this past week, it truly seems like my pain is real though and it is only in the place that I have always had pain, not in other parts of my body. I have had a few surgeries so I have been given dilauded, fentanyl, propofal, morphine and I'm sure some others without any kind of problems...was that what you were asking? The only thing I would say is that the last time I was in the hospital (about 2 months ago) for a surgical procedure on a cyst, I was having pain at like a 15 (on a scale of 1-10) and was given 100 mcg of Fentanyl and I felt that it did not really touch the pain at all. I attributed this to having been on oxycodone for such a long time and having a tolerance to those types of meds. Can you please clarify some of the strategies you mentioned in layman's terms? your post was a little technical and was not sure how to interpret it, although I'm pretty sure I would never want to try ketamine, I do take a magnesium citrate supplement at night as instructed by my nutritionist. Thank you!!

xx
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