Pain Meds......

[Lindasue]

I have read so much about the pain meds here and weaning yourself off. I have a question. 3 days after "T"'s operation (12/27/06) to fix her c5/6 break she could feel my brother touching her feet and she could also tell him which toe he was touching and was actually able to tell him it hurt. The doctors claim she is a complete, but we know that "name" is for reporting purposes only. She had some spasms in her legs a few days after the accident. Now she doesn't have anything. She wasn't on bacoflen very long. It seems that alot of folks get sensation back once they wean off which "T" wants to wean off pain meds soon. I'm wondering if the list of meds that she is on is alot. It seems like most people on the thread are dealing with one or two drugs at 30-150mg per day. It seems like "T"'s rehab is just filling her full of meds to keep her quiet. Any help. Here is the list Celebrex-200mg-2x daily, Cymbalta-60mg-daily, Elavil-10mg-evening, Lyrica-600mg total-throughout the day, Kadian-20mg-bedtime, MS Contin-30mg-bedtime, and then is also allowed in addition to all of the above MS IR-15mg-every 4 hours for moderate pain or MS IR-30mg every 4 hours for severe pain. I do know at night she will sometimes ask for the 30mg slow acting MSIR. T is very good about how much she is taking and she doesn't want to take to much. Also she gets a shot of Lovenox, Colace-stool softener, 2 senokot tables twice daily and they just added Detrol. The unfortunate thing is that her pain tolerance is very low. What we have found though that if she has a bm daily the pain is tolerable so we may have found our key to weaning off, but we haven't started yet. Any thoughts on all the meds. Thanks everyone!:-)

[David Berg]

Well first of all, it looks like she's taking some anti-inflamatory meds for "regular" pain and some other stuff such as Lyrica and Elavil for neuropathic pain. These types of pain are very different and require very different approaches. I hardly have time to go into it here now, but it would be well worth your time to research the differences.

Second off, you really can't just use an overall number such as "30-150mg" and apply it to different meds. It just doesn't work that way. Even between Lyrica and Neurontin, very similar drugs in a lot of ways, the dosages required to help neuropathic pain are very different. I know a number of people on 1800 all the way up to an extreme high of 9600 mg per day of Neurontin. 3600 to 4800 isn't uncommon. You'd NEVER see those kind of numbers with Lyrica, obviously. It's also common to combine meds such as Lyrica and anti-depressants such as Elavil. They work well together in this sort of situation.

Lastly, while weaning off pain meds may be an admirable goal, what is the reason for doing it? That matters, a lot. There's a difference between being addicted to a drug and being dependent on one. Many people with chronic pain, whether it's neuropathic or not, are dependent on pain meds to have a passable quality of life, and it often doesn't get rid of all the pain. There's nothing wrong with taking a drug provided it's well managed and appropriate.

[Lola_wheelie]

neurontin work just fine for central pain and baclofen is great for the spasms .

just my 2 cents :)

hugs, lola

[metronycguy]

Any help. Here is the list Celebrex-200mg-2x daily, Cymbalta-60mg-daily, Elavil-10mg-evening, Lyrica-600mg total-throughout the day, Kadian-20mg-bedtime, MS Contin-30mg-bedtime, and then is also allowed in addition to all of the above MS IR-15mg-every 4 hours for moderate pain or MS IR-30mg every 4 hours for severe pain. I do know at night she will sometimes ask for the 30mg slow acting MSIR. T is very good about how much she is taking and she doesn't want to take to much. Also she gets a shot of Lovenox, Colace-stool softener, 2 senokot tables twice daily and they just added Detrol

i can see your concern, most meds have side effects, undesirable side effects can lower the quality of life, which no one here needs, the other problem is living with pain is worse. interesting you mention how emptying the bowels every day really lowers the pain levels.
is she being treated by a pain management doctor?
how much colace a day and is it at least 3 times? lot of constipating ingredients in that menu.
someone else would have to chime in on the sennakot tablet twice daily? i agree with your concern

[firesmurf]

I personally am wondering just why she appeard to have some level of actual sensation shortly after her injury but lost it somewhere along the way.has any doc actually explained that to you?i seriously doubt that has anything to do with the meds,in fact,if that loss was from some level of actual swelling,the anti inflammitories should have made things a bit better,you know what i mean?has she had any sort of a follow up MRI with contrast at the actual injury site to look for changes since this actually happened?this,if it has not been done at all recently,really does need to be done just to check for any possible new issues or changes.my NS had me coming in once a year for an "annual' MRI just for that purpose.the thing is,once anyones spinal cord becomes injured or even just affected in some way,certain chenical changes take place and other strange and bizarre things appear to kind of pop in out of nowhere.this has what has been going on with me ever since my injury took place in 2003.

everyday it seems something is most definitely different than the day before.its kind of an ongoing process.and because of muscle atrophy,nerves can also become somewhat displaced from their normal spots.i now have a nerve in my L hand that is actually rubbing against solid bone now that used to have that muscle to help cushion it.so things can and do keep on changing in SCI patients for alot of reasons.

i myself would really be interested in finding out why she actually lost that level of sensation that she obiously DID have at one point.could have been PT or some other wierd thing that just happens in SCI patients.but that just doesn't seem right,you know?

also using and trying different narcotics can help too.i know with myself,any sort of MS will cause me to feel very sleepy and totally unmotivated,but being on oxy products actually appears to have the opposite effect.are her NSAIDS actually really helping with her pain?i am only asking as they can be pretty hard on her stomach and if they really are not helping,why keep taking them.is she seeing an actual pain management doc at all or just her primary or some other doc for her meds?seeing a real pain management doc really helps much more than most any other only because they can offer you so many modalities to try and control pain that no other types of docs really can.they also appear to really understand all types of pain much better than most docs do.just a suggestion if she has not seen one yet.she just needs to have all of her meds as well as her current condition all re evaluated for possible changes in the meds and or treatment options.it doesn't hurt to do this from time to time actually as our bodies do change as well as our responses to the meds we take everyday.some will eventually lose their effectiveness over time.its called tolerance and it does happen with alot of different types of meds.just something to consider.

i really am sorry for hers and your situation.i hope things work out better for you all.take care,marcia

[Lindasue]

Everyone - thanks for all the information that you shared. 1. I didn't mean to lump the mgs together - I just didn't want to be lengthy in my question - so now I know that there are really high levels out there and that this is okay. 2. she wants to wean off the meds so that she can be coherent, not constipated and feel again. As we know that most meds block any spasm/movement that you have and her goal is to go to Push to Walk. 3. Baclofen she went off within a week or so of the surgery. 4. I believe the loss of sensation was due to all the meds because we do know that meds will block whatever you feel. 5. She had an xray done of her neck when she got to Kessler, but not much was said. Although they did do a recent test on her bladder and they believe that she will regain full control of that - God is good. 5. I monitor her pain levels alot (I'm really a nut case like that) and I try to see what happened differently in her day that sends her into this nerve pain. Before the accident she always had really low blood pressure (80s & 90s is normal for her), was always tired all the time and also had issues with being very cold and then very hot - could not regulate her body temperature so that is more intensified now since the injury. She also had bm problems too - where she wouldn't go for 2-3 days and she would always feel horrible until she went. Well one thing about Kessler is that they want everyone to go everyday and sure enough once she started going everyday her nerve pain in her hands and feet became almost nothing. Poop is toxic and I'm sure now with the injury it becomes even more toxic in the body because you are not moving around. Forgive me for rambling, but I just want to do everything possible to help her and having all of you to give me guidance has been the biggest help. Unfortunately the doctors can't help because they are not going through it. They just label you and then don't deviate outside of that level. As you all say everybody is different, but the doctors just lump everyone together. Stay strong everyone and thank you so much for your help. God Bless!

[firesmurf]

Hi linda.i just wanted to to mention a couple things.pain meds,even the anti spasmodics,will not in most cases,actually 'block" sensation.they just don't work that way.they will cause,if possible,a reduction in pain sensation,but as far as actually causing some sort of a very real blocking of pain,they just do not have that capability.her loss of sensation is more than likely somehow a nerve related issue either very secular to that area or from some place along the injured area and how those nerves run to the area where she did once have sensation.it really sounds to me like you are not getting the full skinny here on everything having to do with her injuries.

i would very very highly suggest that you gather up every scrap of paper that has been generated on her since her injury occured,all the possible testing results and everthing from every doc that has seen her,including ALL records in her central medical files at any hospital or rehab facility(and individual doc records there too) that she has been to.anywhere she has been,will have some sort of medical record of that visit or stay.you DO need to gather this all up and then take a good look thru all of these records to see what these docs have been thinking about her injuries and what they attribute that loss of sensation to.you will get the docs 'impressions' from what they feel her biggest issues are this way too.believe me,i didn't understand or really know alot about my own body til i had to gather up all of my many records for my disability claim.it was very highly informative,let me tell you.things i was never ever told were in those medical files,espescially with regards to the MRI results or other scanning type of results.unfortunetly,and this appears to be more the rule not the exception,most docs,espescially the 'specialists"? will not always tell you everything that is actually found in any test result unless they happen to "feel' it is pertinent to the issue at hand.trust me on this one.

In order to really try and understand the full scope of injury and to really help in just getting the best possible treatments for her,you really just have to fully inform yourself about her true condition.this medical record gathering is just quite frankly,one of the best ways to do that.i have,ever since the initial gathering took place,continue to like every six months now,request all new medical records just so I know what the heck is going on behind the scenes with my own body and my own care.hopefully by doing this,you will also gain a much clearer insight to her real self and what she is really dealing with.i know as a mom? i am merely assuming this is your daughter by what you have stated?correct me if i'm wrong,this is excruciating for you,believe me,i do know at least some of what you are going thru as i have been thru hell and back with my son thru liver failure,transplant, depression,then bi polar III and then last but not least,a severe brain injury(brain bleed into the frontal lobe of his brain) and double skull fracture that left him in a coma and now with a certain level of cognitive damage to his brain.this all on top of all of my SCI crap.its a load sometimes,but you can get thru it.

hopefully once you can actually obtain all records,it will prompt all the right questions to be able to ask her docs and will give you a much clearer picture of just what is going on with her and her level of actual injuries and the areas they affect.which will of course dictate what can be used to best benefit her and improve things for her.i do wish you luck and please keep asking questions,thats the only way to really find the good answers.marcia

[bunkalar]

I don't think weaning off meds will help get sensation back. I've never heard of that. If the doctors say she is complete I think a lot more times than not they end up being Right. Complete and incomplete are significant terms, and are commonly used when a person with SCI has to describe his or her injury. Having spasms doesn't mean she is regaining movement in her legs. Pretty much everybody with a spinal cord injury has spasms, and most take medication to reduce them because they can be a pain in the butt. I'm three years post injury and I have spasms. The longer she she goes without getting sensation and movement back the less likely it will happen. It all depends on how bad the injury(the bruise) is, that's it. I don't mean to burst your bubble, I'm just being realistic.