Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Quality of life scale

RobinRRobin Posts: 1,652
edited 06/11/2012 - 8:32 AM in Chronic Pain
Just thought that I would post this..I haven't seen it here and don't know if it has already been posted-if so--sorry about that.

My pain is pretty severe today in my neck and left shoulder/arm..to the point that I'm really,really having a hard time here..so I'll just say goodnight for now.I'm going to shower and put my TENs back on..it has been helping a good bit.

I hope everyone has a good night.. :H



  • Hi Robin!!!!

    Thanks for sharing that! I'm usually at 3, 4 is a good day, even though there are plenty of days that it takes all I've got to get dressed I still make myself do it. On the really bad days, getting dressed and doing what I have to do (2 young kids) is all I manage. If I didn't have a 6 yr old and a 4 yr old, I would probably stay in bed but it's not an option. Laying on the sofa, getting food for them and playing referee are about it many days.

    Hope you fee better tomorrow!
  • This was interesting to read.

    I'm right there with you, Beth. I'm generally between the 3 and 4.

    The extra's I do aren't listed on here. Those would be my stretching throughout the day, aqua therapy, land exercises and walks. To bump up to another number would be the days or nights we go out to eat or see a movie. I lasted through intermission at the Broadway performance of CATS, but could probably sit through the whole show at this point.

    Great little read. Thanks, Robin. Sleep well.

  • That's interesting. I'm a 2 and have been for a long time. I plan to start walking again once it's over 23C or 75+F. I'm getting over a long pain episode. I wish you less pain days ahead. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I couldn't find the one for force yourself to work, because I'm addicted to eating =)) And paying taxes so I don't lose my home. If I could rate it on what I really feel capable of doing, it would be between 3-4. But no choice, which I'm sure makes the pain worse. Hope all have a good day tomorrow. Yeah, it's Friday, can rest up for next week.
  • I had seen this scale several months ago, it scared me then and scares me now. When I first saw it I would say I was at a 4 on my good days, now a good day for me is a 2.

    Not only does this scale scare me it shocked my family, they all knew I was in a good deal of pain, but seeing it rated like that hit us all like a bolt of lightning.

    I really hate these scales pain scales too. Always seem to make me more depressed to realize how I rate on them.

    Hope everyone here finds ways to raise their levels soon.
  • You hit on a good point. If we put a number on ourselves like these scales do, they can become quite debilitating to our self worth and daily image of ourselves and our lives. Someone spoke in another thread earlier about self fulfilling prophecy and I can see scales like this being a big influence in that regard.

    If I'm cruising along and feel like I'm having a good day, in my heart and in my mind I am doing great. If I stop and rate it on someone's scale and it falls below what I was initially feeling, now I have to deal with the "why's" and "what if's" and "how come's" and now all forward progress has halted.

    Now there are many folks who find rating scales to be very helpful in judging where they are at measuring their progress. So for them this sort of stuff is good.

    So flip a coin and figure which is heads and which is tails.

    Have a great day

  • dilaurodilauro ConnecticutPosts: 9,877
    I think that the discussion of Quality of life issues is so very important. Scales, however always
    seem to have a problem
    Those of you that have read my previous posts know that I am not a big fan of the current pain scale.
    I know it is necessary to have some form of measurement because that is important in coming up with various action plans. But the 1 to 10 still doesnt seem to really do justice.

    My idea of a pain scale:

    OK, not all the bad, I can handle it
    Whoa, having some problems here, I need help
    HELP Now - Quick

    But, more importantly, Quality of Life. Again, I may try to simplify this.

    I am happy to be alive, I know I am pain and suffer, but I can deal with it.

    So many times, I wonder why I have to go through all of this, I hurt all the time, I cant do what I want to do, I am so tired of all of this

    I cant do it, I dont want to do, living like this is not living. I am looking for the end

    I apologize if I seem to minimize this situation. Again, it is such a real issue. Before my father passed away, he dealt with years and years of back problems, diabetes,
    strokes, heart attacks, he had food peg installed, etc
    He loved life, eating, drinking etc, so he just said one
    day, I dont want to live like this anymore, if I have a problem and need to go to the hospital, please, let me just stay at home. We honored his wishes and a month later he had problems, stayed at home in bed and passed away, but it was on his terms!

    My wife deals with this so often in her job running a Pulmonary Rehab center , mostly for COPD patients. Most of them are terminal, so its a matter of making them have the most of life while they can. She also is on the ethics committee at the hospital. So many times, the discussion of Quality of Life comes up when there is patient situations where there doesnt seem like much medical hope, but the family wants everything done

    Robin, I like this topic you started. It is so very important for everyone. Thank 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
  • I was just diagnosed with c3/4 bulging, c 5/6 herniated disc and we haven't yet started to look at lower back pain. I looked at the scale and I agree with Maggie about you have to force yourself to get up and go to work and take care of the kids and do your chores, go to kids activities and etc. I don't think I could use that scale since I HAVE to do these things. I am glad it's Friday so I can rest this weekend but even on the weekends I have to do things with the kids.

    I think if I didn't have to work and etc. on that scale would be a 4. Sitting here at work is a struggle.

    Take care all and have a great weekend!
  • I have not seen this scale, is there a link to this?
    Feeling rather positive for the 3rd day in a row I would like to assess where I 'am so on the bad days that are lurking around the corner I can look back and see there is hope.
    Have a great weekend.

  • Robin, thanks for posting this. It's very interesting. However, a lot of us could look at that scale each day and pick a different number.

    For instance, on Saturday, I could feel like a 7 and work in the yard, do some laundry, meet with friends, do some housecleaning then make dinner. All of that would put me at a 2 on Sunday.

    I'm not a big believer in pain scales either for the reason I just stated. There's also the spike pains - I'm walking along feeling pretty good, then Wally gets underfoot and I have to avoid him which makes me step wrong and there's that shooting sciatic pain down my leg that hits fast and hard, goes away, but leaves a residual pain afterwards that's worse than before.

    Pain is so subjective - it's hardly ever at a steady pace. It ebbs and flows like most things in life.
  • I do have to work, but as for the rest I usually have to weigh the importance of what it is versus how much medication it would take me to get through it and what am I going to pay later for doing it. I think that pain scales are too subjective, just like most of our pain. We may all have the same conditions but our perception of that pain is going to differ greatly. I'll never forget when I met this woman that used to live in my neighborhood and we became friendly. I found out that she was on disability because of a bad back and we bonded. One day she told me that it seemed like I had a "worse" back than she did and yet I could work and she couldn't. I told her that it couldn't be measured that way and until I walked in her shoes or she in mine then we couldn't compare apples and oranges (she was a mail carrier prior to disability and I sit at a desk). We all have "good" days, weeks, months, etc. Medications work for awhile and we can do more...then "WHAM" out of nowhere I'm late to work, can't walk down the hall and sit at my desk all day just praying for it to end, go home, cry my eyes out with ice on the back, pain meds, and extra attention from the family. Luckily, those days aren't as often as they used to be, to me that's an improvement in my quality of life. I actually only use one scale which is "can I give my son his bath tonight" or at least be in there for part of it (or something with one of my three kids)? If I can, then most of the rest of it doesn't matter too much, scale be darned. But thanks for the post.
  • This is a great post. My number changes according to how I feel, but I think I fall between the 0-4. On the worst days I'm at a 0 of course. When I feel a bit half decent I'll tackle some light chores, and then the day after I'll be at the 2 range. I'll go out if my husband drives and then I would be able to take my meds. I believe that most of us don't stay at one number, and that our range varies from day to day.
  • I appreciate all of your replies to the Quality of life scale.

    Though I am not a fan of scales,and certainly this one would be no exception,I do understand the need for Drs.,agencies,etc.,to use some type of guide in the ways that they go about their business.

    We are all looking at the scale as individuals,pertaining to ourselves...exactly how I did when I saw the scale.The people who evaluate us,or our Drs,who might look at many patients on a given day,week,month-can't/aren't going to be as focalized and are going to need a more general way-or slot to put us in.

    I can't imagine a bunch of people sitting in cubicles scratching their heads-trying to put hundreds of individuals into these slots,without any guidelines or scales to follow.If they hated their job I can see them marking little squares on a page(like the tests we took in school)and just marking anything to get the job done--and where might that leave a CP patient?

    This is why I think we have scales....it's more for the Drs,and agencies,etc.than it is for us really.

    I can't look at that scale and let it get me 'down',or bring me 'up' either for that matter.I'm not that easily influenced...but I can see how it has the potential to make me a little sad,like it did briefly last night.

    So,IMO,scales have their place,and we don't have to like them..but somewhere,for some reason,somebody has us fitting perfectly into their slot,on their scale,in their desk.
  • I agree Robin that it is needed for those who are treating our pain to have some way of finding where we fit so that they can have a starting point at least in how to treat us.

    I have seen hundreds of Pain Scales, never cared for them, so many people feel pain differently and have a different tolerant level. I may be a 5 on the pain scale and you may be a 7. But both equally in serious pain.

    But my issue with the Quality of Life scale is how shocking it was to see how darn low I rated. I saddens me to know that I have been slowly going down that scale since back surgery in '02.

    I am now facing more surgery this summer and worry that I will always be at a level 1 or 2 after having it. I had a terrible surgery with a horrible recovery that left me disabled to not only work any more, but to have any form of "Normal Life".

    All I wanted for 10 years before my surgery was someone to take my back pain serious. When I woke up and could not move my legs then they decided to do a MRI. Ended up having to have a rushed surgery with a doctor that I did not like and thought was arrogant. Woke up from surgery not able to feel my left foot and lower leg nor my right lower arm and hand. His reaction "OOPS".

    Now I am facing more surgery with a doctor I know well and have a lot of respect and trust in. But damage is done and fear is set. The quality of life I hope improves greatly after the next surgery, at least enough for me to be able to do things with my little grandbaby Madi.
  • AlwaysAchin
    I understand what you mean.I'm not thrilled with how I fit on those scales either.

    I suppose if a person looked at any scale and just shrugged it off,it might say that the person had totally accepted everything about their conditions,and though many of us have accepted certain things...these scales reinforce my belief that most of us at least,still have hope that things are going to get better.

    If we don't think things will get better,we still hope that they will.

    If I were to be totally honest,this brings about some of my greatest fears-the ones that are always laying under the surface.People always say,'oh,if a man/woman,really loves you,they will stay with you through sickness and health,richer & poorer...really...? For years and years? I don't know,I'm concerned that he might get sick of it-lol.My quality of life isn't getting any better,and he's 3 1/2 years younger than I am.

    I hope that you improve and can enjoy doing things with your granddaughter--I really do.I hope that we all improve.That is always the goal...and I never meant this scale to bring anyone down.
  • Wow....I just read the scale and according to it I was a non-functionong 2 just a little over a week ago.
    Now that I have my SCS implant and fully recover from the surgery I will be a functioning normal person again!! Isn't that amazing??
    I have gone from 40mg of Oxycodone ER twice a day and 10mg Persocet three times a day to 15mg OxycodoneIR every 6 hours if I need them. Amazing!!
    Even with all the pain meds I was on I still had a lot of pain so much so I could not function. I had so much leg pain still that my legs jumped about when I was recining.
    I am not cured of my chronic pain but I am as close as I can get. I still have a long way to go before I fully recover. I am doing so well I do not want to do anything to mess things up. I will take things easy for another 7 weeks.
    Instead of feeling pain I now tingle which does not bother me at all. I am already use to it and never think of it.
    Life is good!!
    Hugssssssssss >:D<
    Patsy W
  • scales don't count. life is great. You fall, you get up. You look ahead. You have a challenge. You go for it. Hope is there even though your in....a wheelchair. Your numbers high if all you do is try.
  • dilaurodilauro ConnecticutPosts: 9,877
    No question that dealing with chronic spinal problems can take its toll on so much of who we are and what we do. But, no matter how gloomy things seem, there are always ways to tell that demon to go to hell and move on. Its not easy, but as long as we have some objective or goal, it does make it easier
    You cant walk, you find other ways to move around
    You need a cane, ok, so you learn how to use it.
    One thing you mentioned, would be my biggest motivator, a grandbaby. There would be nothing in this world, no physical or emotional problem to keep me from being the best possible grandparent.
    I never want to underestimate someone's medical problem, but I have learned what positive attitude and outlook can mean. So many members here have demonstrated that by doing that they can overcome so much
    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
  • can change, I am coming form just that perspective. Recently, my pain jumped - at first, blamed it on the weather and then muscle spasms, then 12 days into it - i couldn't take it anymore. I was becoming nausea from the pain. A week later and things have calmed down.

    Now I don't know if I have become accustomed to this new level - or it has decreased, or what...

    I don't like to think of numbers, I put it to myself, can I distract myself from the pain. If I am able to distract my mind with meditation, attention to something, busing myself - it is not too bad. But if nothing can distract my mind - things that have worked in the past - things are bad. And when it becomes nauseating- things are really bad.

    I did look at the link and it is interesting , I find myself feeling one of the stages, but responsible so my activity is in another - So where am I? Because of financial circumstances, I can't not work and not show up - it is what it is.

    I friend brought up a great point - that it is perhaps good I still work, have outside responsiblities - i keep my body moving - it may have to stop at some point, but if i am still able, I going to do all that life expects of me!
  • Pain does not do scales well and we are always predetermined to be at the bottom and looking at the wrong measure to perceive our own performance, in doing thing while in pain scale, we would all be high achievers and perhaps some quality of life is down to what we perceived we should be doing which for many is never realistic or achievable even in the longer term. As said it sometime just emphasises what we already knew we could not do with a scale and confirms restriction and the future, I know many could not do the thing we do in this level of constant pain and that is sufficient for me to know that I am doing my very best with what I have.

    My most recent issue is at what level of pain am I expected to endure all the time, this was unacceptable while in hospital and acted upon, so why should I accept it now and continue with inadequate support.

    Take care John
This discussion has been closed.
Sign In or Register to comment.