how much pain relief is reasonable?

[lisajean]

Hi again,
Just wondering how much pain relief those of you who feel you are getting good pain management actually achieve.
I ask because it seems that anytime we discuss pain with any of my daughters doctors it gets underestimated and undertreated.
I am guessing it is because she is only 18 and her doctors feel uncomfortable treating her.
We have learned and are trying to be realistic. We tell them that our best hope is a 50% reduction in pain.
However we are falling short of that goal with only moments of slight pain relief. Must she spend her whole life prone and vomiting from the pain?
I want to find someone, somewhere who will take her pain seriously and really help her. Am I wrong for believing that this is an achievable goal?
Just want to know if we need to accept what is and move on......
hugs,
Lisa

[Pharmacist.steve]

If her doc is only giving her short term meds - taking every 3-4hrs .. she will most likely NEVER manage her pain.. she will always be chasing the pain and be on a virtual pain roller coaster.

[lisajean]

Hi Steve,
At this time Hannah is taking tramadol 3-4 times/day. She has had major side-effects with most narcotic pain relievers but we haven't tried them all, mostly because of her side-effect profile.
Thanks for your feedback!
Lisa

[Mark N]

I think this is a personal decision and one that each of us will answer differently. My goal is to take as little of my pain med as possible that allows me to get up and about several times a day and yet doesn't make me too groggy. I could take more pain meds and be out of it most of every day and I wouldn't have much pain. I hate feeling that way though and I accept pain to gain more awareness. For me, I am happy if my pain goes from an 9 [barely conscious due to the pain] down to 3 or 4 and I can live with having 6 to 8 if it is for a few days. My target is to have pain levles of 3 to 4.

Your daughter shouldn't be limited to the pain relief she is getting right now. I hope you find a doctor and a medication that will work better for her.

[jena1225]

Mark, are you normally at a 3 or 4 being on your meds? In your opinion, is it realistic to expect that as a goal while searching for my right dosages?

[ErinENj]

For me, I have come to learn that I can't expect complete pain control. I'll never be pain free. But, I think I can expect to have all necessary measures taken to give me enough pain relief to make it so that the pain isn't debilitating. I think, provided I'm not trying to go out and run a marathon or anything like that, that I can expect whatever it takes to keep me able to do some of those 'normal' things in life. I know that my docs were happy to give me a little more than usual because I am trying to finish school and they could understand that, but I'm not sure what's going to happen when I go out to get a job. I doubt my boss will give me 2 weeks off every 4 months to go get an epidural done, so there might be some compromising.

I think it's perfectly reasonable for us to be able to expect our docs to do everything in their power to make our lives okay. We shouldn't have to suffer. I think if they can control our pain to where it's not debilitating and to where it allows us some level of normalcy, they should do everything they can to make it so. I could be expecting too much. It wouldn't be the first time. It seems I was expecting too much when I expected my first pain doc to return a phone call. So I could be wrong. But I think that's what every human being has the right to expect. And I think we have that right too.

[Mark N]

jena, it is something that each person has to decide for themselves. 3 to 4 is what I am able to deal with because I don't like my meds and the effect they have on me so the balance between how much meds and how much pain I can handle is the deciding factor for me. This causes me pain levels of 6 -8 some days but as long as it doesn't last more than two or three days I can handle it.

Is it the right target for you? Only you know if you can deal with it. Some people need to get their pain levels down to 1 or 2 if they are able and a few lucky ones can eliminate their pain.

[GardeniaGirl]

Even with all the meds I am on now, I still have a lot of pain.

But mentally I have adapted to it more as the years have gone on, so, the amount I can "tolerate" now is a lot higher than it was 3 or 4 years ago.

I have also had to decrease activity in order to maintain pain control.

So I am more inactive, but this helps keep some of the pain lower.

My pain is inflammatory in nature, so there is a threshold above which I cannot think about anything but pain. I cannot focus, work, read, enjoy TV, nothing.

But when the pain is lower, I can ignore it enough to read, watch TV, go to a movie, go out to dinner, spend time with friends, and even work my sedentary 28-hour per week job. The pain is still there, but its "ignorable."

I think I am just plain happy when it is ignorable, so I don't try to strive for much pain control beyond that - my body just cannot handle the opiods very well.

[ErinENj]

Gardenia: I agree with you. I think ignoreable is something I strive for also with my pain management. If I can pay attention to doing something else, then the pain is managed okay, but if the pain is so intense that it's all I can think of, there's something off with my pain management treatment.

Does anyone else have issues with the number rating scale for rating the intensity of pain? For me, most days I would describe the pain as anywhere between 7-9. It kinda depends sometimes on my activity. Also, there have been times when at one point, my pain I would describe as being a 10, but eventually, that same pain will become a 7 or 8 because I've become used to it. I don't know why, but I've always been kind of uncomfortable using that scale simply because it all depends on the moment someone is asking me. Take right now for an example. My back is really bothering me, so I'd put it at a 7 or 8, but I know that as soon as I stand up, the pain in my hips combined with the pain in my back from sitting indian-style on my bed without any support behind my back will push it to a 10, which will last for about 15 minutes, and then it'll go down to a 8. I know it's supposed to be an average when my PM asks me, but I'm never sure what exactly to say because trying to remember to either what my pain was at during the past few days, let alone weeks or trying to remember to write it down every time I notice it changing, always seems like something I forget or forget to do. I could just be completely wrong on this, but I've never really felt comfortable with the number scale. I just cna't seem to figure out how to use it to accurately describe my pain because it changes from hour to hour, day to day and week to week, and sometimes even minute to minute. Just wondering if I'm the only one with this issue.

[GardeniaGirl]

Erin -- my pain fluctuates around my body and hour to hour, day to day, week to week, and month to month as well.

I have inflammatory arthritis in my hands, feet, knees, hips, and throughout my spine, and tailbone as well.

So, at any given time, my back may be flared, or my knees, or my feet, or my hands, or any combination of them.

Some days my hands will be killing me while my spine feels great. Other days my feet are on fire but everthing else is fine. Sometimes my tailbone is just on fire but my feet and knees are fine.

So far, only my "non pressure" joints are not affected -- wrists, elbows, and shoulders. My guess is that they are inflamed too, but since there is no constant weight on them, I don't feel the pain.

what is also strange is that my different meds affect different joints. The Imuran really affects the inflammation in my hands, while the Indomethacin really affects the pain in my tailbone. The Enbrel really affects my upper body joints, and the methotrexate seems to help my feet the most.

But all of these are systemic anti-inflammatories.

What a frikkin joy, I tell you. :(

[Mark N]

Noone has consistent unwavering pain and it does make it difficult to use the number scale to describe pain. Because everyone has different pain levels it makes it difficult to use. What may be an 8 for some could be only a 2 or 3 for others. I know that I have had to revamp my use of the scale as my pain has increased. What I used to see as a 6 is now only a 2 for me because my mine has become more intense.

The biggest issue is our pain is subjective and until there is an objective way to measure pain doctors will have to use their own perceptions to judge how accurate we are measuring our pain. As a result, there are some people that are undermedicated because they just don't seemto be in as much pain.

[BrokenBladder]

Mark I have to go along with you on this one. The number scale is flawed at best. If you were to put two people together and they said they had the exact same pain you would get 2 different #'s on the pain scale.
My rheumy once ask me, where are you on the pain scale right now and I don't her that I didn't know, but what I did know was that the pain was too much for me to handle. That was enough for her.

[Kathi49]

I am like Mark in that I try to keep the meds down in order to stay alert and on my feet. That's not to say that some days I do have to take an extra Norco for pain. But if I were to take all the meds they wanted me to I would sleep the day away. I just cannot afford to do that and sleep all day EVERY DAY. So, I either have pain or I sleep. But for the most part what I do take takes the edge off. There is always some kind of trade off. And, once again, I am overly sensitive to most meds.

Lisa,

You are right if you simply describe how bad it is...it is usually enough for them. It is when I go into the ER that they ask about the pain scale or I should say...pick out one of those smiley faces. :) By the time I get there it is usually :eek: or I wouldn't be there in the first place. My PM uses the "pain man" with a scale at the bottom including percentages.

[curiousforever]

Mine also changes hour by hour. Depends on if I'm doing hard work or just watching tv - and the answer for those can flip flop on occasion also.

I can live with a 4 - but it makes it harder to go out and do what needs to be done (I have 4 boys - 3 under 10). I can do it - but it's not really pretty for anyone involved. So for me to go anywhere it has to be a 3 or below. I can do that wiht my pain meds.

If I'm at home I can handle a 5 if I'm only planning on laying on the couch. Anything above that - I'm reaching for breathru meds.

[Scar Tissue]

Hi lisajean! I'm not sure if I read your post correctly but are you with a Pain Management Dr. and your daughter's pain is being underestimated? If that's the case my opinion would be a different P.M. Dr. As far as the pain level I wish to achieve daily I agree with everyone that the pain scale of 0-10 is flawed, one persons 3 is another persons 6. My goal is to take the minimum medication for the most effect without ending up in lala land. If I can find 3 or 4 hours a day of controlled relief, I'm satisfied. Every movement I make causes My S1 nerve root to be pulled on, so the more I move the more inflammation to the nerve, hence more pain. I don't want to live my life in a easy chair, so I actually cause myself pain by moving around and trying to be as normal as possible. So I know for example if I leave my house to pay bills, I am going to be in severe pain in about three hours or so from the movement so I try to wait until my pain meds. peak, then I'm off on the run to get as much done in that three to four hour window I have. Such is life with a blown out lower back, just wanted to let you know how I try to control my pain, I hope this helps in some small way!!:)

[lisajean]

Thanks for your replies,
You answers tell me that Hannah is not recieving adequate pain relief. She is unable to leave the house anymore. It is not worth it to her as she comes home in severe pain, vomiting and bed ridden for days or weeks. She cannot imagine a future based on her level of disability at this time.
I agree that the pain scale is difficult to assess but her pain is a 7-8 at the least and a 10 the rest of the time. Her pain is central, from brain trauma and I don't think her doctors here understand how severe it is. It is very frustrating. We saw another pain doc last week who gave her skelaxin and ketamine cream for her joint pain. This doctor didn't have a clue how to treat the central pain. Very frustrating.
Thanks for letting me vent. I am learning a lot from you all :o
Lisa

[jena1225]

I agree about just explaining the pain. I hate the dreaded pain scale :eek: I cannot measure ANYTHING" with a measuring cup! lol :D

[Kathi49]

Lisajean,

I have absolutely no doubt whatsoever when you say your daughter's pain is a 10 most days. Based on her condition and how you describe it just tells me it is. And also, when I asked my PM about my own headaches (cervicogenic and not from brain trauma) he said that by the time patients reach him for treatment, they are already at a 9. So, yes, I would definitely think your daughter's pain is a 10!

I hope your daughter can get the help she needs. :(

(((Hugs)))

[Mark N]

I am not sure what you mean by hannah's central pain but Ican tell you my story. I switched to MSContin for my pain medication and bumped it up every 3 to 4 months until I found the dosage that handled my pain. Even then, I was in excrutiating pain from overall neuropathic pain that the MSContin didn't do much to treat. I started on Cymbalta for the pain and it was the answer for the rest of my pain. Even though I keep my MSContin dosage levels down and still deal with some pain the Cymbalta takes away almost oll of my central pain. I don't know if this explains Hannah's pain or if Cymbalta will help her out but keep working to get her adequate pain relief.

[Kathi49]

Mark,

I THINK what she means is Central Pain Syndrome (CPS) but I could be wrong. I hate to speak FOR Lisajean and maybe she will come by and clarify it. IF this is right then yes, the neuropathic pain is quite severe. I just read up on it a little bit and it is rated a 10 as it goes through the whole body! I think people that experience polyneuropathies experience the same thing in terms of pain. Without getting super technical the whole pain system acts like one big nerve and basically the nerves just keep firing. Something to that effect anyway. Hopefully, she will show up today and let us know if this is what she means. Anyway, as I already know, just my small fiber PN is and was hard to treat. And I can understand where the frustration comes in. And I will stop right here because I am really uncertain if this is what she actually means. But it sure sounds like it. :(

[OriAl]

Central pain syndrome certainly can affect the whole body. I unfortunately know this first hand. :( It can also affect parts of the body. As it results from injury to the brain or spinal cord, it can manifest anywhere.

Two good websites are www.painonline.org and www.painonline.com. My story is on the latter site as "Reality CP."

[lisajean]

Yes, we have been told that Hannah suffers from CPS/Thalamic pain however not all of her docs agree and some say it is all autonomic dysfunction. She has had a number of brain insults, from tumor and hydro/shunting to surgical error.
I feel like we live in the twilight zone....... doctors don't want to diagnosis CPS but can't really attribute it to anything else.
I feel that Hannahs degree of pain is off the charts, with meds.
Thanks for the clarification and the links.
I just keep hoping I am wrong:( .
hugs,
Lisa

[Joey54]

It depends on how bad the pain is and in my case how much I am able, willing to accept, I do not want BP stress or trips to the ER.

If I were younger I would expect more relief as I would have my entire life ahead of me.

Your daughter is in a bad situation but should work at different opiates to see if she can take any even at a much lower dose than normal if she is hurting enough to vomit.

I will always try to remember that nothing can treat a bad diagnosis pain treatment for a treatable problem is a waste of days, months and years.

Go with your gut feeling.

Joey

[Mark N]

joey is right about trying different opiates as they all act differently to our bodies. I had tried almost all of them at one time without success and just suffered because it felt better to have pain levels of 7 to 8 [with other pain medications] instead of how I felt on the opiates. My OSS put me on Oxycontin following my thoracic fusion to help with my pain and it was the first one I could tolerate but still didn't like it enough to use it on a regular basis. A couple of years later he convinced me to try MSContin I finally found a opiate that I could take and still function like a real person.

It is not MSContin that is so good but that you never know what will work until you try it and give it enough time to work past the side effects. Keep on pushing for adequate pain treatment for her and you may find one that works.

[Kira]

I agree with Mark... I have had really different experiences with different opiates, too.

In the hospital, with acute attacks, they used to give me tons of IV dilaudid. But I get a lot of side effects from IV dilaudid, so I don't always ask for my prn doses, and then my pain goes through the roof. But the IV morphine doesn't bother me as much, so they can use that and I can actually take high enough doses to get some relief.

Similarly, the first long-acting opioid I tried was MS contin. It didn't do much for me, so after a little bit of playing around with doses, my PM and I decided to switch to the fentanyl patches instead. The fentanyl patches work much better for me than the morphine did.

Does your daughter go to a pain clinic, or is she getting her pain meds from a primary or her neurosurgeon? I found that the pain clinic was much more useful in dealing with my pain than any of my other docs...

Your question, though, was how much pain relief is reasonable? I guess I am "satisfied" when it gets down to around 5 or so on a regular basis... 5 is post-op shoulder surgery pain for me. I still have my attacks where the pain is at its max, even with the patches and stuff. I would say that going on the pain meds has brought me down from an average pain score of, say, 7 to an average pain score of maybe 4.

[cindybear]

When I firsy started out with narcotics they made me very ill and itchy..but they were the only thing that helped my head pain a little bit...What my docs did for me was give me phernergen 25's (still on them ) and for the itchies they had me buy benadryl,,That combo truly helped my body get adjusted to the narcotics..Yes, I had to use this combo for awhile and was in bed alot but without it , I was so bad iI was in bed in a featal position..Now I'm not pain free but I am mostly a 4-5 range,,without meds,,I am no doubt a 10 !! Some serious pain with the trigeminal nerve in my brain and it hurts badly..Oh yes also I take 200 mgs of topamax , It has truly helped calm that nerve..But if anyone ever decides to take that med ...take it very slowly...like 25mgs every 6 weeks when tirating up...The side effects are worse than the narcotics... Hugs, Cindy

[oh_snap]

Central Pain Syndrome is a beast. You might PM lobelsteve and see if there are any "expert" pain docs out there who might have ideas on how to better manage your daughter's symptoms/pain.

The doc who rx'd the ketamine compound may have had the right idea, but needs to be more aggressive than just ketamine lotion on her painful joints.

Ketamine does act on different pain receptors, and it can be used to treat severe neuropathic pain (among other things), but does require a doc who is knowledgable in its use.

Many of these meds target different receptors, and it is a matter of finding a doctor who will "think outside the box" for your daughter and not stop until he/she finds the right med/combination to help her.

I was once "too young" to have "real" physical problems...but, they were "real" regardless of what docs or insurance wanted them to be, or felt I should or shouldn't have (because of being young). If anything, I would have believed that our young were entitled to have their pain/symptoms taken seriously.

Getting older didn't win me any awards either. I started having the "normal" stuff that women who have had children get (umm, along with some old sport injuries), then I looked like a complete nut with everything that was going on.

The more complicated you get, the more scarce the doctors become. I also believe that unrelieved pain of even moderate levels creates a cascade affect on the health of that person.

BTW...tramadol is a joke for what your daughter has been diagnosed with. You need a doc that can be dedicated to finding some combination of meds that might allow your daughter to have some quality to her life. I don't know if one med will do the job, it may have to be a combination that hit different receptors. You may also have to look at alternative therapies to help relieve the myofascial component. You may also consider, along with treating her pain, seeking the support of a counselor familiar with chronic illness. She has a long road ahead of her.

I think I posted some links about ketamine use (no, not illegal street use) and that of lidocaine infusions for treatment of RSD and other "resistant" or centralized pain syndromes. It may be something to research.

Best of luck. I definitely feel for you (and your daughter).

[lisajean]

Hey all,
Thank you soooo much for the great feedback. I put in a call to Hannahs pain doc this morning to let him know we need to try something else now! Of course his office hasn't called back :rolleyes: . I am beginning to see that strong pain meds is not the worst case senario... the pain is. I also think that a pain clinic may be better than a local physiatrist (which is all we have here).
The problem with the opiates is not the itching which can be controlled with Benedryl, but the manic agitation that Hannah seems to get. Not sure how to control that one but you all have encouraged me to keep trying different ones until we get it right.
Hannah had a 48 hour lidocaine infusion and it made her feel so bad, worse than ever. And Ketamine (used to sedate her during a PICC placement) made her hallucinate big time). She still has nightmares about that. BTW, these treatments were done at University of Chicago, not locally.
So we will continue forth and hopefully be able to post a success story soon.
gentle hugs to you all,
Lisa

[jena1225]

LisaJean, which meds has your daughter tried? Which ones could she tolerate, but maybe did not give her enough relief perhaps because the dose was too low? and they stopped it before trying a higher dose??

[lisajean]

Jena,
That is not an easy question. Hannah has tried many meds. Often at first there were limited side effects and limited success, or good success but bad side effects but when tried again the side effects were overwhelming so no success or some other combination of the above.
I would say that the neuroleptics were not helpful, topamax, neurotin, lyrica, lamictal.
The SSRI's at first had a good effect on mood but then put her into an emotional hellhole and no help with her pain.
The opiates include vicodin, codeine, darvocet, percocet, oxycontin, methadone,fentanyl patch, dilaudid... ack... too many to list w/o looking at her medical records.
I really think that Hannah did not have a fair trial of pain meds because her NS kept saying that her pain would eventually go away, her Neurologist said that her pain was because of the meds and her psych said it was stress. Plus, her pain started following a botched NS at age 13 and nobody wants to go there :( .
again, thanks for the feedback.
love you all,
Lisa

[CoolAngel28]

Lisa,

Just stopped in to offer support and prayers for you,and Hannah..{{hugs}}

Kristin

[Kira]

I am sorry that your daughter has to go through all of this at such a young age. I'm 28 now but started having problems when I was 20. I have a bunch of complicated issues due to a metabolic disorder. In the beginning, it was so hard to get things taken seriously, because my symptoms were difficult to explain and there wasn't any one test they could do to validate what I was complaining about (neuro stuff... paresthesias, weakness, numbness). They ruled out MS and Lyme's Disease, then told me there was nothing wrong with me. I spent the next few years thinking that I was just plain crazy or soemthing; that it never happened, basically. But then I got REALLY sick, out of nowhere, when I was 25, and there were nice objective lab findings to make it plain as day that I had something "real" going on.

Sorry to get on the tangent about my own issues... I described it to make the point that I have spent a good deal of time being blown off by doctors, too, and now I have gotten to the point where I don't let them continue to be my doctor if they are not willing to take me seriously.

I have gradually learned (through experience... trial by fire) what I need in a doctor, and I have learned to get a different doctor/second opinion if I do not feel satisfied with the level of care a doctor is providing for me. I recently switched to a new PCP, for example, and will see her next month. I switched b/c my old PCP didn't know much about my disease, which is fine (it is a rare disease), but also was not willing to read the explanations my specialists have written up or just read up on the disease in general.

I have learned that, even though you feel like a pest, you really have to keep after them until they give you what you need (or at least a plausible explanation about why they CAN'T give you what you need). .

There are unwritten "rules" in pestering docs, though.
-1) Even if you're mad, don't yell at the person on the phone... be assertive, not aggressive (Like the old "you can kill more flies with honey...")
-2) Before you call, prioritize all the stuff you want/need, and only bring up the top 2 or 3 issues for now.
-3) Avoid seeming like you're telling the doctor how to practice medicine. Ask, don't demand. (for example, I need a way to do these IVs at home... what are your thoughts on how to do that? ---rather than--- Put a Port-a-Cath in my chest so I can do the IVs at home.)
-4) Don't let the doctor out the door without all your questions answered. Write the questions out ahead of time so you can remember them
-5) If you bring up pain & meds, talk about it in terms of the pain itself ("It hurts here", "The pain is so severe that it is affecting my sleep, walking, ability to work, etc", "The pain is better/worse than it was last time we talked," "Heat, rest, stretching makes it better, but exercise and missing meals makes it worse", "The pain feels stabbing/aching/crampy..."). Do not talk about it in terms of "Drug X is the only one that worked" unless they ask you what works best.
-6) Be honest about the extent to which the pain is affecting you. Do not try to minimize it. Make sure the doctor knows how much you are hurting, where you are hurting, what makes it better/worse, what brings it on, how long you have been having this pain, how/if it fluctuates, etc.

For your daughter... if she is on meds that aren't working for her, then the meds need to be re-evaluated. I would put my "pest" hat on and bug those doctors of hers until someone comes up with sometihng to try.

And DON'T let them pull the "you're so young...." stuff. Young or not, she has a physical reason for her pain, and her pain is quite real and it is interfering in her life. It needs to be treated... not token-dosed with a little tramadol, but actually treated.


Sorry this got so long. I just really hate to see it when someone is clearly in pain but is just getting bounced between doctors who don't do much. I hope you are able to touch base with a good, caring, intelligent doctor who can get her pain levels down.

[jena1225]

Lisa - I can imagine how frustrated you must be :( Have you ever thought of walking into a doctor's office and just simply saying right off the bat: "Before we go any further, I need to know that you are willing to go the distance with us. We have been blown off too many time and we need answers as well as relief for my daughters pain."?

I know it sounds pushy, but what's the worse that can happen? They might see your desperation and take you on as a "project"...