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Young and in Pain - Its not easy

dilaurodilauro ConnecticutPosts: 10,045
edited 03/15/2013 - 1:32 PM in Chronic Pain
This is a thread that I am sure that so many younger members will be able to relate to.

Tonight, at the store, I was talking with a beautiful young lady. I had met her a couple of years ago at my physiatrists office. She was in an auto accident which damaged her shoulder and created lower back problems. I was asking how she was feeling and it was pretty easy to see by looking into her eyes, she was not doing well.

Being young, they tell her she is too young to have surgery, and yet being young they do not want to give her narcotic pain medications. Sound familiar? They don't want to do what could help her in the long run, but wont do anything in the short term to help her. Instead, they are beginning to prep her to understand that she will live with her problems and pain for the rest of her life!

Now, if someone tells you that when you are 45, 55, or 65, you might be able to swallow it all. But when you are in your 20's what kind of sentence is this?

Several things:

1 - There are always options for people to help them in the long run. Being young does not rule out solutions.
2 - Because you are young, some doctors feel that prescribing narcotics is not a good thing, they feel a) you are a drug seeker or b) you will get addicted.
3.- How can anyone tell a person so young that they have to deal with this for the rest of their lives.

I am old (not mentally but in the number of years) I will never understand why young people have to deal with more things then they have to. I am not blind to realize that there are many young patients that are looking only for those narcotics. But so are older members .

We all know that chronic pain can impact our lives so much more than just physical pain. The emotional pain can be so much more, that at times make the physical pain seem less. And when you are young and alone, there may be no one to help you with the problem, many of your friends are healthy and can not relate to what you are going through. So , when they want to go out and party and you decline, they view as being weak and lame. At work, people do not understand, they just see you as a young person and should be able to do this and that...So when you dont, or I should say can not, they label you as being a bad worker. This goes on and on

Those of you who have known me for a while, know that when I say the eyes dont lie, they understand what I mean.
I still remembering looking into this young women's eyes. It was so clear that she was hurting, but not only physically, but inside, emotionally. I might have said a few words to her tonight so that she understands that there are so many others out there that will and do understand.

I gave her the URL for Spine-Health. I really hope she takes the time to register and login. Kristen, I will be looking for you!

To all the young folks out there, you will always find those that can and will help 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
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13

Comments

  • Even though I'm now 33, I've had chronic back pain to various degrees since I was under the age of 10. I've always tried very hard to hide this from friends and family, sometimes accomplishing this, sometimes not. A coworker I love and adore is also my age with 2 small children. I feel so many people compare us... and I'm always the "looser". I try not to let it bother me, but it always eventually does. I try not to constantly point out that she has 4 adults (her parents and her husband's parents) who cook supper, pick kids up from daycare, give her time at home alone to clean, weekly etc. etc.) and how I never had that... ever... I focus on this "lack of help" mentally in my head as a "jusitification" of why her house and car are always cleaner, and her children always have the most elaborate "treats" for daycare parties, etc. I tell myself that if I had that kind of family help my life would be much more similar... but the fact is.... its our health that separates us, not our amount of support. She has told me on many occasions that my hair looks better flat ironed and I should wake up earlier everyday to do that like she does... (implying that I'm just too lazy). How do I explain to her that I wake up much earlier than her, but instead of spending my time with a flat iron, I spend my time standing in hot water for an hour simply trying to overcome the "morning pain". It's too personal and something she can't begin to understand. I'm sure if I told her about my "real mornings" she'd never bring up the flat iron again, but it would be out of pitty, not understanding. So instead I just say, "yeah, I like my sleep too much." Anyways, I wish I had known about this forum in my 20s and teens. It would have been so nice to have had people to talk to instead of feeling so alone. It probably would have also given me more confidence to seek out medical health instead of just spending years "accepting" it and doing more damage.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • I was 24 when I was a very unlucky passanger in 2 car accidents over a three day span. I was addicted to cross country running and had a huge passion for yoga, spinning, anything outdoors and physically exhilarating. I was extremely healthy because I enjoyed every aspect of that lifestyle. I was defined by my running, it was everything to me.

    Looooong story short my spine was compressed, months of agony and fighting with doctors. I knew something was wrong. It has been 11 months and 11 days since my failed L5-S1 Discectomy and 9 months and 4 days since my L5-S1 PLIF w/ decompression. My doctors were hesitant because my age but one look at my MRIs and there was no question it needed to happen. I hope that my age may actually be a good thing, my body has time to adjust and adapt.

    I had fused at just under 6 months! However, because of the stress the military put on my case (trying to kick me out on my ass with nothing, that was not gonna stand with me) obviously added stress to me. Instead of being able to focus fully on recovery I was focusing on if I was going to win the fight or end up with an ended career and no help at all. My final diagnosis was that Clinically the PLIF was a failure. I was diagnosed with "Failed Back Syndrome". I was pissed I tried to do everything right I was determined to heal but the stress and having a shitty physical therapist (had never dealt with a fusion and didnt care to) took over. Also because of the delay in my diagnosis (took 3 months to get a damn MRI) my Sciatic, on the left side, is completely damaged. It was apparently compressed completely after the accidents and stayed that way for almost 6 months until my first surgery. I am fighting pain daily... INSANE pain. I hate to show it, Im stubborn and have developed in impressively high pain tolerence.

    I am 26 years old, undergoing a medical review (odds are I will lose my military career) On top of the consistant back pain I have a leg that does what it wants when it wants. It burns and stings and goes numb, it doesnt like to always respond to what I tell it to do and enjoys just giving out on occasion. I have lost my identity, I dont get to hang out with my friends very often. I have to limit my traveling, I cant rememebr the last time I got to go out and enjoy a night on the town. I am not suppose to drive over 5 Kilometers at a time, so I have to depend on other people. I feel as though my independance has been stripped from me. Some days are the worst you could imagine but luckily I dont have the attention span to stay bummed or upset about my situation. Its boring to be miserable, but I do have days. Its not easy and I never expected my life to be this way. I am hopeful that when I return to the states I will be able to have more resources to help in really healing. I also have a tremendous amount of hope that I WILL PREVAIL! I will overcome all these unfair obstacles that have been lined up for me. Being in my 20's is crappy because I want to live and I have barely been able to function fully in over a year, Its gone. I am starting to be defined at work by my injury and it pisses me off more than words, I am a jet engine mechanic and obviously now I work mainly admin stuff. I worked my ass off to get to the status I was at and it is fading. Ok I am sorry for the rant. The keyboard got away from me for awhile. I didnt proof read this either as I have to go somewhere and my ride is waiting. ::Sigh::
  • dilaurodilauro ConnecticutPosts: 10,045
    edited 03/15/2013 - 1:34 PM
    I have read so many situations similar to yours, maybe not medically, but the way the military handles it. I always shake my head when I read things like this. Excuse me next statement if it seems political. But I would only hope that more attention and compassion is being given while handling our military. Those that served our country, or any other country, risking their lives, we owe them a lot.

    Now for you, I dont even have to comment on your medical problems, what your posted is all I ever need to hear for people who are dealing with spinal problems and chronic pain.
    Baby Steps said:

    I also have a tremendous amount of hope that I WILL PREVAIL! I will overcome all these unfair obstacles that have been lined up for me.
    That says it all and so much more....... You will be on top when all is said and done
    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
  • for understanding, dilauro. I can only imagine how much Kristen appreciated your understanding, empathy, and caring when she spoke to you. It IS so hard for young people to handle this chronic pain situation. My son went through the exact same thing - no help, no suggestion of help, no where to turn, no surgery, no medication, etc., etc, etc. because of his age.When we first began this journey he was under 18, so completely at the mercy of the adults who weren't helping at all. I watched my son slowly fade away. I saw the pain and frustration move into anger and then on to deep sadness and despair. It was heartbreaking. Fortunately we found this forum which helped with support, information, and suggestions. Everyone here has been wonderful. All of you members let us know that there were those out there who really truly understood. Wow - the power of finally feeling understood! Then we found a pain management doctor who was willing to help. He keeps really close tabs on everything, but has never, ever once made my son feel like he was a drug seeker. Can't say the same for all doctors or nurses, but that's a WHOLE other story - ugh! But, I so hope Kristen finds her way to this forum and knows how much we all understand - and care.
  • My best friend and I both found ourselves landed in the world of young chronic pain sufferers last year, she's 26 and I'm 24. We both had it come on suddenly with no accidents and no explanations. We both have young children, new families, and are trying to figure out how to deal with all these new limitations, the possible loss of careers, and all the other things that come along with this life. All the while hoping that a miracle might happen helping us to get at least some of our lives back. She's in a more positive place than I am right now, having had surgery, and she's feeling good about her plans to build her body back up, but it's still very helpful to have someone who I've known since I was two who is going through a lot of the same things. It's incredibly valuable to have support.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • dilaurodilauro ConnecticutPosts: 10,045
    chronic pain. I've read so many posts here about how abandoned a person feels and how lost they are because they really have no one to help them, support them with their spinal problem. Then on the flip side, I've read so many positive threads about people dealing with pain every day, but because of their support system, it helps them get by.

    I've dealt with pain for more than half of my 60+ years, but I've also had the unbelievable amount of support from my wife and my children. Without their support, I can not even imagine where I would be today and even if....

    We are never too young nor too old to appreciate what support can do for us.
    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
  • anelsen15- Yes, both were overseas. My first was on the local economy here in Italy (it looked like a WWII type hospital, I was the youngest person in the Ward the second being 39) and my second was up in Germany at Landstuhl (A Military hospital). I have never really had any serious Medical Issues so I was shocked at how the whole situation was handled. However, after coming to this forum and seeing how often individuals have issues with Insurance even paying for needed surgeries I was happy that the Mil. had no choice but to cover the surgeries I required. The resources aren't always the best sure but what can you do. I did have excellent surgeons.

    Thank you very much Ron DiLauro. As you all know it is at times a struggle to stay positive. I do feel for individuals, like many of you that have been struggling with chronic pain for years. Your continued strength is amazing to me. I too hope that your young friend finds her way here. I unfortunately do not get to use this resource as much as I would like (No internet out where I live at the moment and am usually pretty swamped at work) but I think it is an amazing one. I agree it is wonderful to have someone understand you! Especially because it is so hard to have your peers even begin to have any idea what you are going through. They will try and at first may a bit then they grow tired of it and just kind of fall off, sometimes they even take a turn for the worst and can be rather mean, when in all actuality they can't even begin to see the amount of strength we are actually showing on a daily basis!

    Thank you for this thread Mr. DiLauro and everyone that took time to share their stories as well. It has been a positive start to my week.
  • davrunnerddavrunner Posts: 478
    edited 03/18/2013 - 6:40 AM
    medical records. If they decide to retire you (either permanent or temporary medical) make a copy of your medical records. Your records will be sent to the VA and it may be very difficult to get a copy later on. Those records will help if you seek treatment from a VA hospital and the fact that you can show the injury occurred while you were in the service it will give you a higher priority in being seen.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • I am so thankful for my pain doctor! She is truly nice, understanding and does whatever she can to help me out. Yes I take hydrocodone and have for a few years. I don't ask for higher and higher dosages and I am willing to try all other things like injections, tens, other meds, pt and whatever else she recommends. It took me a while to get to this point and I feel horrible for others that have rude doctors.
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • Well said!!! I think that big guy up above sent you to this girl-----
  • I had a microsidiscectomy to correct a herniated disc at the age of 28. After only a month, I reinjured my back. I was then called a drug addict for six months by my surgeon becuause he wouldnt believe me when I told him that my pain was worse. So, I took the abuse and walked around with this disc collapsed for months and then finally when I was offered another MRI, only if I knowledge that if the MRI failed to show anything new," we will have a serious talk about drug addiction". When the mri came back and my only option was to fuse L5S1, I was beyond upset. I have permanent nerve damage due to this collapsed disc, not to mention that my muscle was growing around the collapsed part. I have never recovered,(they found more pieces of disc left from the first surgery that should have been originally removed) I now suffer from failed back surgery syndrome and am awaiting a spinal cord stimulator. I talked with an attorney and was told that becuase I was so young, no one would think that a healthy 28yr old would have these sorts of problems I'm outta luck. If you are young, and have troubles please don't let them assume anything becuase of your age. Ask questions, take good notes, you never know what can happen. I wouldnt wish back problems on anyone, least of all young women. I was lucky that I had my babies before my back troubles ( we would have had one more). Relationships are effected too, I always say that there is three people in my marriage, me, my husband and my pain. Good luck to you and if I can help i anything, don't be shy!
  • Thank you for this thread. I am 25, and have been dealing with pain for 3+ years now. More than one doctor has said to me, "You're very young to have this type of problem." It's frustrating, as feel I should be in the prime of my life. I'm trying to begin my career, stay fit and healthy, and have an active social life. Pain can make all of those things difficult. I'm glad there are others out there who understand how hard it is to be young and in pain.
  • Hi everybody. I have been a member for a few years here and kind of have been in and out, here and there.

    I can't count how many times doctors and other health professionals and everyday people told me over the years, "You're just took young for all of this." I still remember very well when I first felt my back pop--I was 26 years old at the time. That was 16 years ago and it seems like things gradually went down hill from there. I went from working a good full time job making a good wage to having to work part time, as my back/sciatic-nerve couldn't and wouldn't tolerate heavy work. The discs continued to degenerate the in lumbar and started bulging and deteriorating in the neck.

    6 levels fused between my neck and lower back (5 surgeries) later, I am still having problems. Never wanted to stop working and being productive, but here I am with a SSA disability case pending, waiting for a hearing. It really sucks!

    I'm not the type of person that would want people to feel sorry for me--I don't. Now I just have to figure out how to get ME to stop feeling sorry for myself.

    It really does feel like a death sentence!

    Thank God there are people out here like all of you that "Get It."

    Charlie

  • dilaurodilauro ConnecticutPosts: 10,045
    edited 03/23/2013 - 4:24 PM
    Better when you are young or when you are old?

    Well, I am old and I have lived a great life, I have had so many memorable times in my life, being married to the same women for over 40 years now, having great adult children. I have cherished so much of what I have experienced.

    Now, if I am young, I probably havent had the time to do all of those things, so, yes that makes it somewhat harder. And we are young, we might not have the experiences to deal with certain situation in the right way ....

    But , heck, above, I am talking only about a life and death situation. None if applies or comes even close here.[/b[

    Spinal problems. Yeh that can put a real damper on the things, but being young right now to me does have its advantages. Ok, first we need to get the "You are too young for surgery, or You are young so you what drugs" out of the picture. Treatment to younger patients needs to be done the same way it is done to older patients. The actions may be different, but they all need to be taken seriously. Advances in spinal surgery is happening so fast. Techniques are improving. Even in the last 5 years there have been so many new ways in doing spinal surgery. And that will continue. Things that may not be FDA approved today, may be tomorrow. Thoracic surgery in 2005ish was barbaric. I dont think anyone would have gone through that considering the way it was done and anticipated results.

    All of that says to me there is a great rainbow in the sky and it will be heading towards a pot of gold.

    When I had my first back surgery. I was in the hospital for 2 weeks, had to wear a corset back brace for 4 months and was not allowed to return to work until 6 months later! Today, almost the same L4/L5 surgery, you are out in a day, up and about and driving in a week or so...

    The Future and Progress, that is where the young have it over the old today. So many of us over the years have wished for that one miracle pill to cure
    all of our spinal problems and make us pain free. Who knows it may be coming?

    I have a lot of faith in our youth. I was a sports coach for about 18 years and have seen many young children grow up into become amazing adults. Being young has its drawbacks, people may not respect you as much, we all know that happens with some doctors. I was a wine expert by the time I was 24. I sold a lot of wine, but many people did not take a young ponytailed looking wild boy as being capable of having in depth wind knowledge. If anything, I wish I could get a message to so many 'older' folks who dont give our youth a real chance.

    I apologize for getting this thread off beat for a while. It just that when I read anelsen15's post, it got me a bit hot under the collar. (but he knows it, I get him hot under the collar at times also, but there is a mutual respect there)
    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
  • 6uitar6irl66uitar6irl Posts: 10
    edited 04/27/2013 - 6:48 PM
    I have had severe pain since I was 21 years old, am now 27. I go to many many specialists...every single time, whenever any of them look at one of my MRIs/xrays/other scans, they marvel at how much pain I most certainly am in, then say something like 'no one your age should have to be dealing with this.'

    They admit I am in horrible pain...and THEN say "we usually don't prescribe that high of a dosage for someone your age..." Ummmm, I will not live to see 30 if I continue being underprescribed narcotics that have helped me significantly in the past...because I will kill myself.

    Thank you for your post, I really hope doctors stumble across this.
  • charlie6017charlie6017 Posts: 412
    edited 04/28/2013 - 5:31 AM
    Hi 6uitar6irl........to be honest, I would share that very sentence to your specialists, that the agonizing pain makes you question whether life is worth living if you're in this kind of pain. Make sure they know your current meds are unfortunately not adequate enough. Be as honest as you know how to be--don't sugarcoat it.

    I feel for you, as I was also young at the onset of my pain--I was 26 then and 42 now. I totally get it and hope you can find some needed relief soon. Hang in there! ;-)

    Charlie
  • Just catching up with this thread. I know I have been very fortunate to have surgeons not just willing to fix my spine, but to improve my quality of life. When all of this started at age 9, my surgeon was really torn with how many levels to fuse. I was NINE. When he asked me what my favorite thing to do was, I said DANCE! That solved it. He only fused a couple of levels of my lumbar so I'd still be able to continue what I loved. Sure, he (and my family) knew then that I might require additional surgeries much later in life, but hey, I could also have died from other causes before that time could come. He wanted to be sure I could get the most joy out of life as possible. I danced through high school, took ball room dancing in college, and although I did not dance with my husband at our wedding (we just had a social hall reception), I have danced with him at many other weddings/events. When I wanted to have children, I found an OBGYN willing to make connections with PT and Anest.(I had to be put completely to sleep because of the twist/curvature of my spine, and other issues prevented natural delivery). Then when my lumbar did start collapsing, I found another amazing surgeon who really looked at what he could do to improve my quality of life. One item of great concern to me was I wanted a third child. He came up with a time line for that to happen. Plus he made sure that the hardware in my hips could be loosened (a small surgery) prior to pregnancy and tightened back after pregnancy. Funny though after my last two surgies this past month my husband and I have decided we do feel like our family is "complete". My surgeon just laughed when I told him that. He has assured me that once everything has fused and healed I'll be able to play "man on man" with my husband and 2 kids as opposed to "zone" if we had added a third. All I'm trying to say is.... to you out there that are young and in pain... keep searching, don't let one or even five doctors discourage you... and don't let the comments like, "your back looks like your 80." get to you... I (and countless others) have been told the same thing. There ARE surgeons/doctors out there that WANT to help improve your life... the challenge is finding them. The even bigger challenge is to stay positive, and only you can do that. It's hard, I know first hand, but its the biggest obstacle you (and all of us) face.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • dilauro said:
    This is a thread that I am sure that so many younger members will be able to relate to.

    Tonight, at the store, I was talking with a beautiful young lady. I had met her a couple of years ago at my physiatrists office. She was in an auto accident which damaged her shoulder and created lower back problems. I was asking how she was feeling and it was pretty easy to see by looking into her eyes, she was not doing well.

    Being young, they tell her she is too young to have surgery, and yet being young they do not want to give her narcotic pain medications. Sound familiar? They don't want to do what could help her in the long run, but wont do anything in the short term to help her. Instead, they are beginning to prep her to understand that she will live with her problems and pain for the rest of her life!

    Now, if someone tells you that when you are 45, 55, or 65, you might be able to swallow it all. But when you are in your 20's what kind of sentence is this?

    Several things:

    1 - There are always options for people to help them in the long run. Being young does not rule out solutions.
    2 - Because you are young, some doctors feel that prescribing narcotics is not a good thing, they feel a) you are a drug seeker or b) you will get addicted.
    3.- How can anyone tell a person so young that they have to deal with this for the rest of their lives.

    I am old (not mentally but in the number of years) I will never understand why young people have to deal with more things then they have to. I am not blind to realize that there are many young patients that are looking only for those narcotics. But so are older members .

    We all know that chronic pain can impact our lives so much more than just physical pain. The emotional pain can be so much more, that at times make the physical pain seem less. And when you are young and alone, there may be no one to help you with the problem, many of your friends are healthy and can not relate to what you are going through. So , when they want to go out and party and you decline, they view as being weak and lame. At work, people do not understand, they just see you as a young person and should be able to do this and that...So when you dont, or I should say can not, they label you as being a bad worker. This goes on and on

    Those of you who have known me for a while, know that when I say the eyes dont lie, they understand what I mean.
    I still remembering looking into this young women's eyes. It was so clear that she was hurting, but not only physically, but inside, emotionally. I might have said a few words to her tonight so that she understands that there are so many others out there that will and do understand.

    I gave her the URL for Spine-Health. I really hope she takes the time to register and login. Kristen, I will be looking for you!

    To all the young folks out there, you will always find those that can and will help you.
  • I have had severe pain since I was 21 years old, am now 27. I go to many many specialists...every single time, whenever any of them look at one of my MRIs/xrays/other scans, they marvel at how much pain I most certainly am in, then say something like 'no one your age should have to be dealing with this.'

    They admit I am in horrible pain...and THEN say "we usually don't prescribe that high of a dosage for someone your age..." Ummmm, I will not live to see 30 if I continue being underprescribed narcotics that have helped me significantly in the past...because I will kill myself. posted by Guitargirl

    My own pain problems began in my teens, with a knee injury after falling on a wet floor at 16.....intermittent pain meds during the worst of flares but most often it was anti inflammatories given and physical therapy...then I worked at retail , moving heavy crates and boxes for much of my twenties, which only started back problems for me. At 28, I had my first child but in the months preceeding her birth, my husband and i had a motorcycle accident, hitting a large deer on an interstate on a motorcycle at 60 mph. I sailed through the air for some hundred feet or so, before going another 60-75 feet on my back, bouncing up off the highway until i finally stopped.....part of that damage included damage to my already damaged knee, ankle, and dislocation of my right shoulder , as well as skinning myself from mid back down below my buttocks...this set off a whole new set of problems, and shoulder reconstruction surgery less than two years later, and RSd, and the back problems were unbelievable...after almost three years of RSD and failing all of the conventional options that existed at the time, I was finally put on medications, many of them in fact, and in substantial amounts over the ensuing 7 years, but like every one else, I had to jump through all of the hoops that existed to make sure that other options weren't going to work.
    Part of what I see when it comes to medical management of chronic pain when it comes to younger people than I am now is complicated.......there are several issues that come into play, that weren't as big a problem even 20 years ago.......
    One of the big ones is that there is a tendency to want to jump right to narcotics in many cases by the patient, when they have not given many of the other, lesser invasive options a fair shake.....when we were kids, sprains, strains, etc were treated by ice, heat, rest and physical therapy if they didn't get better..dental pain wasn't given opiates- if you had an abcessed tooth, clove oil, anitbiotics and motrin or tylenol were given. Today, there is an expectation that those aren't good enough options and dentists, doctors, ER's all have been far too quick to jump to give a prescription for narcotics rather than to try to use the anti inflammatories, and ice and heat. This I believe came about because of the change in attitudes that pain was a ''vital sign' and anyone who complained of pain was automatically offered opiates when they really weren't necessary and other lesser options were not even tried...
    So, we have created a whole generation of younger adults who can not tolerate pain in any form, and expect that if there is pain, that opiates are the only options.
    The street drugs that once were so common have been replaced by the use of opiates- since most doctors , at least in the last twenty years were giving prescriptions for opiates at any visit, and refills were easily gotten, society learned very easily and quickly, all they had to do was go to the doctor and complain about pain and they left with a prescription or several. No worries about getting arrested because those meds were "legal' and given by their doctor. There was no requirement in place that testing must bear out the condition to treat "pain"- all anyone had to do was say they had it and most doctors would gladly write and refill pain meds, no questions or tests required...this went on for far too long..
    Both of these problems, the lack of using lesser but in many cases just as effective meds like anti inflammtories for things like dental , and other pain problems, and the ease of getting opiates prescribed, has contributed to where we are today.
    No, I am not saying that it is just the younger generation who is self medicating, I am well aware that this phenonemon effects all age groups, and socio-economic groups, but the abuse of these meds, coupled with the ease of access, is far more prevalent in the under 35 age group and the younger the person is, the more likely that there is a potential for abuse or misuse of the opiates.
    If you spend time, reading any forum where chronic pain is the topic, you will find, over and over, that the patients who seem to come in asking which drug is more "potent" or what's " next in line", or what dosage does XYZ medication come in, you will find that those type of questions seem to come from the under 35 group, and if you read further, you will also find that they are self medicating, i.e.....using more of the medication than they are prescribed, they run out early, or loose their meds, have them stolen, and often can not "take/use the LA versions of a medication" for some reason , they just "don't work" for them- allergies are a big reason given often- and when that doesn't work , the side effects are intolerable but if they take the opiate itself in the IR version it is just fine in larger doses....if you can't take a medication in one version because of an allergy, you shouldn't be taking it at all.....and then there is the problem with their pain levels always being a 10 or higher.
    Another huge problem is that patients are seeing their GP's or surgeons expecting that they are going to treat their chronic pain. That is NOT what those doctors are intended to do- ie, it is out of their scope of practice. Surgeons treat acute post op pain, usually for a period of three months after a surgery. If the pain continues longer than that, then you should be seeing a pain management doctor for ongoing treatment.
    GP's/Primary care doctors are there for managing over all health conditions. They are not there to treat chronic pain conditions. Everyone needs to be seeing the proper doctor, for the proper condition. Rhuemotologists are there to treat inflammatory conditions, therefore for Arthritis, RA, Lupus, ED, Those doctors are not up to the latest technologies or advances or even standards of care when it comes to treating chronic pain unless they have a sub specialty in it.

    guitargirl, what i copied from your post is another one of those things that sends up red flags. Your fixation on getting opiates otherwise you will kill yourself is something that any doctor who gives a darn is going to see as a red flag. any of us who have lived with chronic pain have all had days when the pain is so intense you aren't sure you can live another second through it, but with or without medications, we all do...pain isn't going to kill us, as miserable as it can make us but the desperation in your posts is scary.
    What you and others that are younger don't seem to understand is that going higher in doses is not the answer to treating chronic pain- yes, the medications if medically necessary should be available for everyone- no matter what their ages are, however, there is a huge responsibility that comes with having them be added to your treatment plan by the prescriber. You seem to feel that unless the doctors are willing to give you what you want as far as meds and dosages go, then you will not be satisfied. Tolerance is one of those issues that is another thing that seems to stem largely from patients younger........complaints of tolerance happen over time, however it is not a matter or months, but longer. Using a combination of medications helps to ease muscle spasms, joint pain, anti depressants work both for depression but also inhibit the pain signals in many cases. An anti inflammatories do far more to ease pain than people give them credit for. I have been on huge doses of medications over my years of dealing with chronic pain, and at my own volition , have also gone way down on the pain medications instead relying on the other types of medications to help keep the pain levels in check.
    People who are newer in the treatment protocals of chronic pain seem to jump onto the bandwagon that the issue is either tolerance or undermedicated, when that may not be the case at all. It may be that your doctors, feel that given whatever the findings on your tests are, that they are not comfortable going any higher in the doses of medication they put you on. Whether or not, you feel that they are "undermedicating you" or not, they are responsible for your healthcare, and it is up to you to learn as many other techniques as necessary to cope with the pain, and use all of them every day.
    We all have to learn somewhere in our pain journey that medications are not the end all, be all of the treatment of chronic pain, and we have to learn to cope with some level of pain , in order to function at the best level that we are individually capable of.
    If you feel that your pain is not being adequately treated, go see the proper doctor- a pain management physician or physiatrist. They will look at your test results, and come up with a plan to get you back on your feet but you need to be willing to give whatever recommendations they make a good trial- weeks if not months of working with them in physical therapy, bio feedback, swimming, walking, or whatever other recommendations they set for you. Be willing to try whatever combinations of medications they recommend, even if you don't believe that they will work. It is only through that, that you will find relief. Doing what you are doing, laying in bed is only contributing to the problem. Blaming it on uncaring physicians, and tolerance isn't going to work for your benefit.
    And see a therapist who can help you learn coping techniques to learn how to live your life to the fullest while you deal with this condition. It can only help you when you start seeing the right doctors , for help in learning all of the avenues to lessen your pain.


  • sandisandi Posts: 6,302
    edited 05/06/2013 - 10:05 AM
    Shandra,
    It is not my being judgemental, it is trying to get some of these younger posters to see the bigger picture. MY first Mri showed a couple of herniations and some nerve root compression but once I had surgery, like you, the CT scans, MRI's and myelograms didn't show 1/10th of the actual damage involved and two surgeries later, still have far more damage that is permanent.
    The thing is, is that pain medications are a tool- just one tool in the entire box of tools that is truly a comprehensive pain management program. Part of learning to live with chronic pain is psychological, part is physical, and some of it is medical interventions and medications. ALL three of these things need to work together to help someone learn to live to the fullest with a chronic condition. Without using all of the tools in the toolbox, and relying more heavily on one than balancing all of the options in the box, the patient looses out.
    This is essential for all chronic pain patients but even more so for those who are younger than people like me or Dilauro or Jon or anyone else over the age of 35....the younger the patient is when starting to use opiates to manage chronic pain, the higher the chance of misuse, abuse, overdose and death- why? Why ? Because those patients tend to not use all of the tools in the box together, but rather to reach for the pill bottle at every bit of pain. Doing this causes many problems but the big ones are needed constantly escalating doses to achieve less pain relief.....this increases the likelihood of accidental overdose and death due to respiratory depression.
    The younger the patient is, the more likely that once they are put on medications like opiates they become less inclined to try to reduce their dosage later on, believing that once they are put on medications, they need to stay on them for the rest of their lives. this isn't necessarily true. They also tend to want to increase doses more often than other groups as I said earlier. There is a point where doctors are just not comfortable writing doses for a patient outside of their comfort levels. What happens to the patient then? If a patient at 30 is already at 100mcgs or more of fentanyl- and uses 6-15 mg oxycodone or some other IR med every day, within a short period of time, the regular use of IR meds simply becomes more medication added to their baseline LA med dose because it is being taken regularly. Sooner or later, the doctor is going to become uncomfortable going higher on the fentanyl due to the patients weight, other medical problems, or some other variable factor, and decide that the patient is on too much and take them off or worse yet dismiss them.
    Most of us will live until we are in our 70's or 80's if we are lucky. What happens down the road when someone who is young is already at a high dose of medications and they aren't even 30 yet? If you exhaust the options in dosage now, where do you go later? You still have 40 plus years ahead of you and if your condition is chronic, then it is not going to improve, there will be further deterioration and further pain spikes? Too often, that isn't something that is even considered until it is too late.
  • Shandra,
    It is not my being judgemental, it is trying to get some of these younger posters to see the bigger picture. MY first Mri showed a couple of herniations and some nerve root compression but once I had surgery, like you, the CT scans, MRI's and myelograms didn't show 1/10th of the actual damage involved and two surgeries later, still have far more damage that is permanent.
    The thing is, is that pain medications are a tool- just one tool in the entire box of tools that is truly a comprehensive pain management program. Part of learning to live with chronic pain is psychological, part is physical, and some of it is medical interventions and medications. ALL three of these things need to work together to help someone learn to live to the fullest with a chronic condition. Without using all of the tools in the toolbox, and relying more heavily on one than balancing all of the options in the box, the patient looses out.
    This is essential for all chronic pain patients but even more so for those who are younger than people like me or Dilauro or Jon or anyone else over the age of 35....the younger the patient is when starting to use opiates to manage chronic pain, the higher the chance of misuse, abuse, overdose and death- why? Why ? Because those patients tend to not use all of the tools in the box together, but rather to reach for the pill bottle at every bit of pain. Doing this causes many problems but the big ones are needed constantly escalating doses to achieve less pain relief.....this increases the likelihood of accidental overdose and death due to respiratory depression.
    The younger the patient is, the more likely that once they are put on medications like opiates they become less inclined to try to reduce their dosage later on, believing that once they are put on medications, they need to stay on them for the rest of their lives. this isn't necessarily true. They also tend to
  • Well now I am old, I was young once ! Seriously I was ! Back trouble started almost around the time I got married at 29'
    I think geting married caused it , Or at least the thought of having to be married broke me ,

    Divorse brought the pain down from 10 to a 4. But then I almost got married again and pain was becoming a 10 again,
    I think this should be documented in the medical journal of medical science ,

    29 was so long ago wow so much has happened , But I am still here at 52 years old now ,
    That's a lot of years of suffering by any standards, Last 9 years the worse after surgery !

    If I knew surgery was going to make this kind of trouble I could of just got married again and got the same results !
    Man oh man years ago I always said I will never see 50 , But then again I said same thing about 40 or 30 .

    Always looked at 50 as the count down point of life, like ok 51 woohoo. I am still here, 52 wow I can't believe it can't be ,
    World has changed a lot ! Only at this age you realize what your parents were talking about how different it was in there young age,

    Life is different with chronic pain for sure even more different then the norm,
    Very hard to live different and feel left out from many things ! That's never going to change don't mater how long you live,
    That's the facts of life,

    So who ever asks the question how can I live with this and how can I deal with it, The harsh truth in my opinion is you just do cause you have no choice in the mater , I never got use to it and never will , In some way it almost keeps me going knowing I want more out of life then what I got and I am geting it one way or another pain or no pain,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Life is different with chronic pain for sure even more different then the norm,
    Very hard to live different and feel left out from many things ! That's never going to change don't mater how long you live,
    That's the facts of life,

    So who ever asks the question how can I live with this and how can I deal with it, The harsh truth in my opinion is you just do cause you have no choice in the mater , I never got use to it and never will , In some way it almost keeps me going knowing I want more out of life then what I got and I am geting it one way or another pain or no pain,
    Exactly Alex!!!!
    It is called chronic for a reason- it is not going to go away, so you need to have to learn to live with it somehow, and the only way to do that is to keep pushing through and trying to learn to cope with some level of pain - which is why most PM doctors use a 50% reduction in pain as a scale when it comes to effectiveness of pain treatment.
    I refused to give up when I was loosing my ability to walk after my first surgery, and yes I was on a lot of meds at the time, but over these last 7 years I have learned to use every option that there is to manage the pain, and that less is just as effective if used properly than more was back then.
    Believe it or not, your body does make adjustments over time to having some level of pain- and while I may never be free of opiates completely, I am taking far less now than I was even 6 months ago...
  • terror8396tterror8396 Posts: 1,831
    edited 05/06/2013 - 10:29 AM
    it would help if you stated what problem you have and what surgery and what meds you are one. you state that you were taken off one and put on another one. you said after my surgery, my surgeon apologized. what surgery was it. you also said your scan did not show the extent of damage you had. how do you know? how did you find out? did you have another scan and what was it? the point i am trying to make all of these nebulous terms and statements don't help. people need to know specifics in order to help. what caused your surgeon to fuse your back? was it done through general surgery or a microdesectomy with a laser? i was fused due to years and years of pounding due to running 10 miles a day for years and playing tennis for years. it took me ten to fifteen years of pounding to get my disc to the point where i needed a fusion.
    jon
    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.
  • I am so glad to have found people who understand! I am only 35 and have had intermittent, but chronic pain since a nasty fall at the age of 22. When I first fell, I thought ok, this will get better, I am too young for this not to get better. After about a year of physical therapy, meditation training, and steroid injections, the pain finally decreased to a manageable level. It would flare up every 18 months or so. I would get in to pt right away and go back for another series of injections and it would calm down again. Then it started with a nasty pain flare every 12. Months or so, then in 2006 after I had my first child I had a flare that lasted a long 6 months while I had a newborn to care for. That finally calmed down after yet more injections. The flare ups were then every 8-10 months. I again managed through pt, injections, medications, and stubbornness. In 2010 it finally hit me hard. I ended up in the hospital for 4 days for pain control because I couldn't move. I lost my job and ended up taking 6 months to become stable and well controlled again. I found a new job, went back to school and worked hard at raising my children. About 4 months after that, I had another bad flare. I hung on stubbornly and kept my job for another 4 weeks, but couldn't keep it all together and resigned. That flare took another 5 months to control. I was rehired by my previous employer (I am darned good at what I do). Only to flare again 8 weeks later and lose my job. That was November of 2011 and I am still fighting this flare and still can't return to work. I have lost my job, my insurance, had to move, drastically changed my lifestyle and my children's lifestyle, and have dumped all of the pressure on my husband. My kids miss all of the activities we used to do and thankfully they are compassionate and work around what I am and am not physically able to do. I have had surgical consults and told I am way too young for surgery and I have to work with what I have. One surgeon, after looking at my mRI, said I have the spine of an 80 year old bricklayer. Gee, thanks, will you fix it? Nope, too young! I am finding ways around life that work for me. I have resigned myself to the fact that I need assistance usually reserved for senior citizens. I had to have a grab bar installed in my shower, I keep a walker in the bathroom because I can't get up from the toilet on my own, a riser has been added to the toilet, I can't get down the stairs to go to the basement, I can only drive one of our vehicles because I can't get in and out of the other one, my husband finally bought me a secondhand lift recliner for the living room. But on the plus side- I have so much more time to enjoy my children, I have had to slow down and enjoy the simpler things, I read a lot, I no longer work 50-60 hours a week, I got a dog because I finally have time for one. I garden now( modified to meet my needs and no bending), I have time to enjoy the wildlife that visits my yard and teach my children about it, and I camp which I had never done before. Granted, camping for me is sleeping in a pop up camper with a bed modified for me and watching everyone else do the work of setting up and tearing down, but it is great time with my family. I fight hard to see the positives through the pain, and I would gladly get rid of the pain if there was anyway I could. The positives are what keeps me fighting every day (albeit a bit slower than I used to ;) ) and keep me from spiraling into a bad mental state that is always waiting with open arms. This is the hand I have and I have to make the best of it!
    Candace
    DDD & spinal stenosis L4-S1 since 2001
    30+ injections, PT, massage therapy, accupuncture, TENS unit, meds, etc but no surgical intervention
    I am not a surgical candidate
  • MrGrouchMMrGrouch Posts: 108
    edited 05/06/2013 - 1:05 PM
    Ron
    I am very glad to see your post, I am 48 and have expereinced the same problems regarding age and getting the diagnosis done, the "you'll get addicted line", and the "you're going to have this the rest of your life so deal with it " ( the last one landed me in the hospital for a week...I was hopeless) as ones youger than me. I am sorry about the woman and only hope things will improve.

    In my humble opion this thread has gotten off subject and might be worth freezing.
  • dilaurodilauro ConnecticutPosts: 10,045
    edited 05/06/2013 - 1:09 PM
    This is a serious topic and from the beginning, you can tell by the posts that it was seen that way. I only want that to continue. Young folks have an extra hard time in dealing with medications. I've said it, I've said it my thread, so lets let that stay.
    I dont want to see this as one member attacking another member. Each of us have had our own experiences and perhaps demons. Lets not allow that to come out.. We all talk about making this site comfortable for new comers. Well, if I was a new person and started to read the recent set of posts, I would stay far away as possible.

    We all have our right to say what we believe in. I dont think its a question of attacking anyway. I've been here a long time and I have seen so many of the threads/posts that Jon has made. No, he aint no saint, like all of us, but he is black and white and he tells it like it is. So many people have been offended by Jon's posts. Yes, there have been occasions where I have had to talk to Jon about those. But, I will say overall Jon is 99.9% accurate in what he posts. He isnt trying to get someone into an argument. Its just that experience does say a lot. The same applies to Alex. People have PMd me about his rude behavior, that he should stop. Again, Alex is a person I will defend because I believe in what he is saying. He says it upfront and with a style that only Alex could do. Many people dont like that.

    I do know that if I was to have a group of people to help educate others, Jon and Alex would be my first choices.

    But please, do not allow personalities to come into play here. Read what is being posted for what it is. We can agree or disagree on that, but that does not mean we need to attack one another.

    This thread is very important to me. I have seen first hand how young people can be mistreated and treated as they were criminals. That is unfair. That is the POINT of this thread.

    If anything, I hope that this thread continues to talk about ways that younger folks can be treated with more respecte and how they can go about their doctor visits and tests.

    I have a daughter, who is now 35, but has had back and knee problems since her teens. I've seen how she was treated by different doctors. So, I am disgusted by, but then there are others who treat patients as people, regardless of age.

    I want this thread to be used as vehicle for other younger members to read as ways to help their own personal situations.

    Please, Please keep it this way. There have been many threads I would close down when it went south. To me, this is a very important message and discussion that needs to be kept alive. Dont force me to do something I do not want to do.

    Thank you............ And thank you to the many younger folks who have posted here and have experienced so much of what I said and are only looking for help. After all, isnt this what we are all here about
    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 would like to see everyone stay here, with nobody being driven away. Each of us have our own opinions and this is a hot-button topic, and in this case we may have to "agree to disagree" on this. No one's opinion is inferior to anyone else's.

    I would hate to see anyone driven away!

    Charlie
  • MrGrouchMMrGrouch Posts: 108
    edited 05/06/2013 - 1:52 PM
    I can see everyones point. I have just one simple thought to ponder.

    We are all in pain and there is no magic bullet, many times we have to choose the lesser of 2 evils and for many it does come down to medications or being driven by pain and frustration to the ultimate ireversable decision.

    I will end my posting on this thread and I wish the best to the younger folks out there. The only thing I can say is NEVER GIVE UP!!!!
  • Different opinions can provide insight and also bring up valid points of the different younger chronic pain patients face every time we go to a new doctor, refill meds at a pharmacy, or can't participate in activities the way we used to. I appreciate knowing the stereotypes and incorrect opinions I am working against because I can better plan how I can improve the perceptions and situations. Pain does not discriminate and anyone has the same opportunity to be in our shoes. None of us want to be part of the chronic pain group and would gladly grasp at a miracle. Unfortunately, the miracle hasn't been discovered yet. Until then we have to stick together while having an open and honest way to communicate. We all come from our own background and experiences. Respect, openness, and honesty can go a long way in helping us all understand what we are up against. I never understood why medical professionals don't take pain seriously when you are younger. That is such a pervasive misconception and it really hurts us in our care. I do appreciate the different points of view expressed and they give me an insight to help fight for better treatment!
    Candace
    DDD & spinal stenosis L4-S1 since 2001
    30+ injections, PT, massage therapy, accupuncture, TENS unit, meds, etc but no surgical intervention
    I am not a surgical candidate
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