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Life changing doctor's appointment

BlueSkiesBBlueSkies Posts: 59
edited 06/22/2012 - 11:37 AM in Chronic Pain
Well folks, I decided to delete this post...my own little moderation. :) The appointment WAS life changing for me, and I am still feeling the effects of it. I feel like the rest of my life is going to be different than it was last week. I am changed.

I don't know whether it was my doctor's statements about the dangers of hydrocodone which upset so many people or whether it was my own decision to try life without it despite my severe problems, but he wasn't hear to hear you, and I was. Only a few of you seem to be able to accept that someone might choose not to use opiates without judging their own decision to so use, and in light of that, I'm going to remove this post and post it somewhere different where I might run into a different population of people who will.

As aways, I wish everyone the best in dealing with what ails you. :)
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1

Comments

  • dilaurodilauro ConnecticutPosts: 10,040
    I find it upsetting , especially knowing that there are so many caring, compassionate and sensitive doctors out there.
    It really doesnt matter what your condition is or could be, for a doctor to say:
    BlueSkies said:

    "To be frank, the light at the end of the tunnel is death. When she dies, she'll get a new body. Until then, she isn't going to get better.
    There are so many other patients out there with much more severe and terminal illnesses, I seriously doubt any noble doctor would say such a thing.

    I am not the type that tells people to forget that doctor and look for another one. But what I would suggest is that perhaps seeking a second opinion would be warranted right now.

    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 find that a really depressing comment considering I am a 32 year old with chronic pain! If the only light at the end of the tunnel is death than I have a long road of pain and suffering ahead! I am really glad that is not my doctor!!
  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:01 AM
  • LovetrotravelLLovetrotravel Posts: 296
    edited 06/19/2012 - 1:16 PM
    Well...the perspective issue about chronic pain is one thing. I think there always comes a time in our CP journey that we move from thinking that we will be back to where we once were, pain free, to this is our "new normal".

    Now, this doesn't mean we give up. Or that we stop hoping for medical advances, or that we don't do everything we can in our power each day to live the absolute best life we can....with pain.

    But the whole Hydrocodone or opiate issue is another ball of wax! LOL

    If you can get by without any type of pain medication than that is wonderful. Everyone should always go for this or the lowest amount of medication they actually need. No one "wants" to be on medication.

    But the type of treatment for chronic pain that people choose for themselves by working with their Dr. is going to be different.

    I could not care less what "society" thinks about me or the medication I take. I also certainly understand what my PM has to go through and all the extra hoops to prescribe medication, including opiates. But this does not deter him from offering a full range of modalities and basing the choices on each patient and their journey..

    Everyone who has Chronic Pain should be using every available modality based on their pain issues and levels.

    In addition to opiates I use:

    Daily exercise (45 minutes a day)
    Yoga/stretching
    Aqua therapy
    Physical Therapy
    Massage
    Ice
    Heat
    TENS unit
    Injections
    Acupuncture
    Eating Organic
    A muscle relaxer when needed
    A sleep medicine when needed
    Counseling/Therapy to learn healthy techniques to live with CP


    Just to name some things:)....My point being in that no one should just rely on a narcotic to take away all their pain.

    Do I think narcotics are over prescribed these days....absolutely! Do I think there are addicts out there or bad Drs....absolutely....But that has nothing to do with me.

    I have been on my CP journey for close to 11 years now and live with a 5-7 level of pain each day. This is using everything I listed above to help take my pain down a notch.

    My Dr. and I work very hard to keep me on the lowest doses possible of medication. I haven't changed my dosage in years.

    So...as I wrote, if you do not need the Norco to help with your pain levels and can manage with the other modalities only...this is wonderful for you. This doesn't mean it's the same for everyone.

    We all have to decide our own path..I wish you luck:)

  • My doctor said something similar to me a few months after my injury.. At first I was upset at him because I was convinced I could get better, but within a couple months I came to accept I wasnt going to get better. and my Dr telling me this info is what initiated the beginning of accepting this fate so I think its a good thing.

    Your Dr did it perhaps a lil too frankly but I think Dr's need to do this at some point, it helped me cope tremendously and finally let me let go of the false hope of healing and the devastation everytime a Dr or procedure failed to cure me.


    As for the whole HydroCodone thing... well i dont think that was the best advice. If we could magicly produce pain relief 238 stronger than norco at will, then Chronic Pain would not exist. lol
  • Wow if my doctor said that light at the end of the tunnel to me I would be very upset! He is like saying you are what you are and you will never feel better. Yes you live with chronic pain and and a bad spine but there will always be something to try to help the pain from meds to massage to diet.

    As for the 238x stronger than norco thing, then why am I always in pain?
    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
  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:02 AM
  • LovetrotravelLLovetrotravel Posts: 296
    edited 06/20/2012 - 3:40 AM
    May I ask what type of Dr. is telling you all of this?

    Any good and reputable Pain Management Dr. understands the use of pain medications and uses them as PART of their comprehensive program to treat chronic pain.

    That is one of their studies in PM is medication...both narcotic and non narcotic. This Dr. does not sound very knowledgeable if he is using terms like that about Hydrocodone..

    There is nothing "evil" or "dangerous" about medicine that is prescribed properly and taken properly...

    Just like if anyone watched the trial of Conrad Murray....the Dr. for Michael Jackson....Propofol, when used properly in a hospital setting, in the right dosage, is used every hour of every day to help sedate patients while the Dr. performs a procedure or surgery.

    However...it is what killed Michael Jackson because the Dr. who administered it....was not trained AT ALL in Anesthesiology. He was a Cardiologist....He also gave MJ gallons and gallons of this medication without any monitoring. He also did not monitor other medicine MJ took...

    The list goes on of egregious errors that cost MJ his life.

    My point....medicine is not bad...People....both Drs. or patients who are addicts cause bad things to happen when not using medication properly or for the right reasons.

    Again...that is wonderful that your pain is on the lower scale that you can do without any medication....But it is ridiculous for you, or your Dr. to say that no one should take Hydrocodone...Or Hydrocodone itself is "bad" and kills people...

    It's the ABUSE of Hydrocodone that kills people, not the medicine itself. People are not dropping like flies from taking prescribed levels of Hydrocodone a day.

    Another quick analogy is how so many people get the saying in the Bible wrong. It's not "Money is the root of all evil"...it is "THE LOVE of money is the root of all evil".......Wanting it too much....Not using it properly.

    Again...I am happy for you that you have such low pain levels and hope that you continue on that journey..



  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:02 AM
  • LovetrotravelLLovetrotravel Posts: 296
    edited 06/20/2012 - 6:08 AM
    But the whole point you are making is that your pain levels are low enough to not need an opiate. It's that simple. If you can be without a pain medication then your pain level is lower than someone who cannot.

    It's not that you are "stronger" than anyone else....As I said....No one....absolutely no one, "wants" to be on pain medication. The only reason we have to go there is our pain levels are so high that ONLY using non medicinal treatments do not work to lower it enough. And most of us have gone through years and years of treatments to get to this point.

    I still said that everyone should use every modality at their disposal. No one should rely "soley" on an opiate.

    But everyone has a point in their chronic pain journey where their pain is either controlled without narcotics, or it gets to be too much they need to be on them.

    I don't see how anyone is "belittiling" your pain....YOU are telling us that it's low enough to not be on Norco anymore. So I am celebrating this as are others....That is wonderful!...

    Those of us like myself have greater pain that cannot be controlled without an opiate. I don't see what you are misunderstanding...

    The only one who seems upset or defensive is yourself....

    I only got upset about the comment from your Dr. that doesn't sound very intelligent by saying that "Hydrocodone kills people".....

    And that is where I said...no...it's the ABUSE of that medicine that kills people. It's an incredibly crucial distinction.

    It's addicts that abuse pain medication by buying/selling them on the street. Or Dr. shopping...or taking them by injection or snorting them. Or using them when they don't have any pain.

    That is NOBODY on these boards...We are all chronic pain patients....

    The ironic part is that your last paragraph goes on to now "judge" someone else's pain or their illness. A Dr. has diagnosed this person as having Lyme Disease...correct? And a Dr. has decided, with her, that her pain levels are high enough to need pain medication....correct? You are saying you don't believe this?

    How is you deciding to not take Norco "raising the bar"??

    This is where I take issue....It's perfectly fine that YOU have decided...along with YOUR Dr. to not be on this medication anymore...But to judge other Drs. or patients for their choice....that somehow, what...we are too "weak"...or we aren't "raising the bar" for ourselves??? This makes no sense...

    You are not any stronger than anyone else because you have decided to not take an opiate. That's great that you had babies without medication....but that doesn't mean you are "better than" someone who chose delivery with medication.

    I don't understand why you can't just be happy for yourself...that you don't need this because your pain is low enough to deal with in other ways....and that just because it's your choice...does not mean everyone else should do the same.

  • edited 06/20/2012 - 6:27 AM
    I agree with LoveToTravel. Im 22 which is also very young and pain meds have actually helped me get back with friends and talking to girls. If anything is stopping me from falling in love its my debilitating injury not the medicine. Before I was mostly bedridden so painkillers actually helped Raise the bar not lowered it..

    2nd note: Why is everyone so upset about accepting we will most likely never fully heal for the rest of our lives?!? Its just the realist approach, not pessimistic.

  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:02 AM
  • LovetrotravelLLovetrotravel Posts: 296
    edited 06/20/2012 - 7:40 AM
    I am speaking of "nobody on these boards" wants to be on pain medication. Do addicts want them...of course....this is what I have said repeatedly....

    But you are on a chronic pain board. This is not an addiction board. So those of us here....are not addicts...That is something that you should know/learn if you want to be a part of this community. That is why I can speak for those on THIS board.

    And if you are "stronger".....whom are your stronger than? Or what?

    Actually...I've never had to defend my pain program to anyone and I'm not doing that with you. I am only taking issue that you have not just come here to say that your pain is low enough to do without an opiate....but you had to then go on and on about statistics that have nothing to do with chronic pain patients...

    As I said...any Dr. or person that thinks that Hydrocodone is evil in of itself is misinformed. It's people who abuse it.

    It's just like a beer is not evil. But someone who abuses the alcohol...or chooses to drink and drive while drunk is endangering others.

    As I wrote in my first post....A good, reputable, Pain Management Dr. will use ALL modalities to help treat chronic pain. An opiate is just one small piece of the puzzle but it's no less important than the others. That same PM Dr. is not "afraid" or misinformed about medication and it's proper use.

    Anyone who has chronic pain, especially someone that has it starting at a young age I feel sad for because there life is going to be different.

    But it can still be wonderful, active, and full. I can't write it anymore times that a comprehensive pain program includes using every modality that I have mentioned.

    The bottom line is that if you (collective you) are in chronic pain....everything that is added to your program....including opiates....is meant to enhance your life and help manage the pain better.

    IF it is detracting from your life, or IF your pain is low enough to not need the addition of an opiate, then yes....it's best to go off of them.

    That's why it's plain and simple. And since this will be my last post on this particular subject, once again...I am happy for you that your pain is such that you don't need an opiate in addition to other modalities.

    I hope that if you choose to actually be a part of this community. You will fully support those who choose differently from you and not continue to try and make it seem that you are "better than" or "stronger than" those who have higher pain.

  • edited 06/20/2012 - 9:22 AM
    again your coming at this all wrong. You say you grieve that shes missing out on life because of the painkillers, when really shes mising out on life because of the pain and disabilities. The reason painkillers are prescribed is to help us regain somewhat normal lives, not to numb our thoughts and emotions. Of course there are alot of people that use them when they dont need too, but that doesnt mean that everyone that uses them doesnt need them!

    and most of the world doesnt consume hydrocodone because its not available in most countries, 3rd world because its too expensive and even some 1st world countries as they use morphine and other alternative medications.

    The WHO(World Health Organization) deems morphine and morphine-like products ESSENTIAL for the treatment of severe pain.
    Of course there are the abusers that take advantage of this but that doesnt make our need for these drugs any less valid.

    And regarding the whole making us emotionally/mentally numb thing about these medications

    This last semester at college I got a 3.8(the highest GPA ive ever gotten) and it was the first semester I was on painkillers 24/7!(no brainpower lost) I am finally able to regualarly hang out with my friends for long periods of time/ Also it was the first time I was able to go camping and hiking trips after my injury, and I can finally hold a steady schedule at work now(social web/hobbies regained). All of these things would be out of the question if I didnt have 24/7 medication, I know because I wasnt on a constant dose of painlkillers the first 6 months of my injury and I was bedrridden half of those 6 months.

    You should be celebrating the fact that we have something to give us back our lives, instead of buying into the sterotypes and stigmas and condemming it. Its fine that you dont want to be on narcotic medication and I wish I could join you there believe me. but its ignorant to think its a bad medication to be on for chronic pain.
  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:09 AM
  • Neck of Steel CindyNNeck of Steel Cindy Posts: 1,064
    edited 06/20/2012 - 7:40 PM
    Welcome to our community. This topic is one way to get your feet wet here, and it seems to have sparked a bit of interest.
    I would ask that all members try to refrain from derogatory comments here. Your comment
    (despite the fact that apparently some people have reading comprehension issues and think otherwise).
    does nothing but ruffle feathers, whether that is your intent. So read a few posts and get familiar with the members here. We all try to get along. The discussion taking place here could be good if comments like what I posted above were not a part of it. So please try to keep it polite and calm.

    I think it is great that you are going to attempt going off of the Norco. Only you knows your pain level and what you can do. Being proactive in your own health and pain management is very important. The yoga and back massage, etc. could give you some relief. I hope so. Many of us here do a bunch of different modalities daily, just trying to live with the pain. That is on top of our medication routine. I know I spend a lot of money for those kinds of therapies, yet I still find myself needing help from meds. Without the meds I live my life in so much pain that I don't function. Without meds I end up escaping to my bedroom in an effort to cope with the pain on my own. It took me about 2 years into my journey to finally accept that I need the help from pain meds if I want to live my life. And even with the help, it isn't much of a life. But every day I get up and try to make it better.

    On a side note, I first hand know of 2 people who have committed suicide due to chronic pain and the feelings of hopelessness that comes with it. One of the people had back surgery. The other was MS. 2 families ruined because of pain. It does happen. Without my wonderful psychologist who helped me with acceptance, I may have been close to that ending too. Pain does kill. Opiates kill too. We just have to use them wisely as another tool to help us get through the day.

    I hope things work for you. I look forward to seeing more posts from you. Please keep them kind and we will all get along well.

    Cindy
    Moderator for Spine-health.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • PEDMMPPEDMM Posts: 39
    edited 06/20/2012 - 8:42 PM
    If you can accept that you will have pain, Dont ween off.. Just stop taking. Dont do yoga for you will still be in pain after/ I dont mean one word I just typed. I felt so mean even typing it. Why leave it? Because I understand what other replies are trying to say, Do what works for you, dont judge, belittle or make it seem that what we do we shouldnt, I wish you all the luck in the world with all avenues that you take to feel pain relief. I have and it didnt work and therefore I am greatful that I am able to come here and relate to all who post. "If I could no longer relate to anyone on here I would wish everyone luck and find a new community." THats just me. To all thank you for being here for me and I hope to continue hearing the bad stories with the good, Good night
  • neednewbacknneednewback Posts: 229
    edited 06/20/2012 - 10:40 PM
    How I feel about the matter is that if a medication while taking it causes you a decreased quality of life then it shouldnt be used. I have tried many medications that work wonders for many, but for me have so many side effects I'm much better without them, even if they do help my pain, its a simple cost benefit analysis. I do feel like your doctor has downplayed the effects chronic pain can have on the body. Due to the number of years and the amount of pain I have been in my physical therapist had to work on me for a month and a half just to calm my nervous system in order to get my body to move right and to quiet the fight or flight response. Pain can cause many of your bodily systems to not work properly or to even fail if severe enough (your body goes into shock). I just wanted to make a point that it is way more complex of an issue to just state pain meds will kill you and simple pain is just something you can suck up and live with. When talking about living with chronic pain it becomes a huge emotional hot topic issue because it has changed our lives so much and for many of us for so long.

    Blue skies, as far as the new view your doctor has given you about your situation, I have gone through that and in a way even though its a life sentence, its very freeing to accept your condition and with that mindset move on with life. Its so exhausting to go from doctor to doctor feeling that that cure is right around the corner and the frantic feeling of hold on we will fix you soon. My wife and I have been on a long ride with this and its emotionally draining to be in this constant state of having hope and then feeling crushed. I havent given up hope of finding something that fixes or at least greatly reduces my pain, but it has become more of a matter of fact thats what I do and I try more to focus on how to live life the best I can in this condition.

    I think you are on the right track of focusing on the whole body approach to your situation. As far as the hydrocodone, I hope you getting off it is something that allows you to feel more empowered and overall better. I do feel like your doctor has scared you away from pain meds and I'm sure that is why this is such a heated topic, if you do find yourself needing meds in the future its not a sign of being weak, or risking your health.....sometimes they are just needed. Best of luck..........Mitch

  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:10 AM
    Mitch, you hit the nail on the head as to how I'm feeling...freed up to move on. The adjectives you use - frantic, exhausting, draining - were exactly how I had felt, and now I feel, as you say, "matter of fact". I will try not to give up either on the idea that there's some surgery out there that can fix one of my problems without aggravating another one, but in the meantime, I'm just going to try not to make doctors a part of my life as much as possible.
  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:10 AM
  • dilaurodilauro ConnecticutPosts: 10,040
    The original topic was discussed and many posts addressed it. Now, this thread is getting off track. Instead of addressing
    the original statements, its slowly becoming, I said, You said, No I didnt, ,etc
    If this continues, I will close down this thread.
    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
  • BlueSkiesBBlueSkies Posts: 59
    edited 06/22/2012 - 7:04 AM
  • MouseMMouse Posts: 30
    edited 06/21/2012 - 7:37 AM
    Considering the "associated press" are the ones who reported the so-called 99% propaganda that your doctor apparantly read, I wouldn't put a whole lot of weight into what he said. I have to agree with above posts, if my doc told me that - he probably wouldn't be my doc much longer.
    Good luck on your journey - M
  • You said " Do I have enough pain to justify using hydrocodone? Undoubtedly. But at the end of my life, I don’t want to feel like I missed out on the ups and downs of it because I was “justified” in being numbed up during 50% of it.
    It’s completely ludicrous to state that “absolutely no one wants to be on pain medication”. Lots and lots of people want to be on pain medication. Lots of people want to numb themselves to the stresses of the world. And chronic pain patients aren’t above that. Chronic pain people can get addicted to opiates and use them to their detriment just like anyone else.
    Personally - I miss out on LIFE IF I am in so much pain and do not have the opiates! I miss a lot more than 50 percent too. Maybe chronic peeps can get addicted but maybe you don't know there is a line between addition and need. It IS different. I found that comment to be rather annoying. You'll be back here in a couple months telling us about how your back on Norco because you found you had no life anyway...
  • MouseMMouse Posts: 30
    edited 06/21/2012 - 7:45 AM
    That last line was unnecessay. I might be feeling like shit and on one today. I apologize for that last line - I shouldn't have put that there.
  • Welcome to the forums and good luck with your treatment. One thing I've learned is that each one of us is unique. What works for the poster above me, might not work for me or the person below. So, whatever it is that you find which works for you best is what works for you best. I think this is why you received such a strong reaction, you are attacking what you feel isn't right for you, but please remember that it's completely valid for many of the rest of us.

    Also, the "facts" you originally posted are pretty much all wrong. Feel free to post correct facts with citations to their source if you can.
  • CertifriedCCertifried Posts: 91
    edited 06/21/2012 - 8:46 AM
    Here, I'll throw you a bone:
    http://www.cdc.gov/nchs/data/databriefs/db81.pdf

    The CDC study that your doctor is mis-quoting.
    CDC said:
    Poisoning is now the leading cause of death from injuries in the United States and nearly 9 out of 10 poisoning deaths are caused by drugs.
    "Poisoning" is the leading cause of death. Drug poisoning is 90% of that. So, "poisoning", not Oxycodone poisoning is leading. "Drug" poisoning is 90%, ALL drugs, not just painkillers.

    Sorry, it just irritates the hell out of me when people bend statistics to make a point, their point, to push their agenda. This is the political ammunition that is being used to slowly take our healthcare choices from us. I agree that opiate abuse is a terrible problem in the world, but attacking a legitimate form of medical care that so many chronic pain patients (not addicts) rely on is the political way to address the issue. That helps no one except politicians to feel better about what they're doing. (yes, I live in the DC area, can you tell?)
  • Great minds think/research alike. And I agree with pretty much everything you said
  • BlueSkiesBBlueSkies Posts: 59
    edited 06/21/2012 - 11:05 AM
    ...The topics were and are:

    1. Have you ever reached a point where you had to face the idea that your condition was never going to go away, and did you find that acceptance liberating?

    2. Does the realization that your condition is a forever situation coupled with the point that hydrocodone use is a 99% American phenomenon and, coincidentally, the #1 cause of accidental deaths in the US ever persuade you to stop using your hydrocodone-based pain medications.

    EDITED TO ADD: Alternatively, did the realization that your condition is a forever situation ever persuade you to stop using your hydrocodone-based pain medications?

    My answers to both questions were "no" last week and "yes" this week, and I am finding that to be a life-changing event.
  • BlueSkiesBBlueSkies Posts: 59
    edited 06/21/2012 - 11:17 AM
    Mouse said: "You'll be back here in a couple months telling us about how your back on Norco because you found you had no life anyway..."

    Thank you for your support of my efforts to attempt to control my pain without medication. You guys are awesome.
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