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    how to want to live (HELP)
    chrisjb7 posted:

    Take the Poll

    Should I go back on opiates at age 27? Will they really stop working? I am not sure I have a choice anymore
    • go on opiates
    • get a neurostimulator
    View Poll Results
    chrisjb7 responded:
    It wouldn't let me write this when I tried to make the original post but the following is what I NEED help with and some support and advice.

    I stopped taking opiates 3 months ago. I have had back disabilities since I was 7, surgery at 14, and the pain became much worse at age 20 (I am now 27). Since I have stopped the opiates, I have had horrible pain most of the time. In addition to the back pain, I have also developed severe neuropathic pain that when it occurs, is 100% debilitating and sends me into a massive panic about how I can possibly survive in this state, especially when compounded with back pain. Back pain is still by a long shot my biggest problem. Right now, and since I stopped the opiates, I have not done anything but go to doctors every single day that I can manage to drive. I plan to return to school in 2 weeks, only taking 1 class, but I worry if I will even be able to handle anything. I honestly don't want to go back on the opiates, but I don't think there is really another option. I do not want to live in this much pain. It is impossible to find joy in life like this. I go to psychiatrists and therapists to help my mood, but I have yet to figure out why I would want to live in this condition. I am on Lyrica and do physical therapy which has helped some. I see a new pain specialist in 2 days who my neurosurgeon said had a more "balanced" approach in that he doesn't automatically do surgery or dispense narcotics and he said that is the type of doctor I need. He also said that intrathecal pump (which was not advisable at my age AT ALL), a neurotimulator (he thought a good option) or opiates are what could possibly happen. I am trying to read books on how to live in chronic pain with "stories of hope" but I can't find any hope in my situation. The doctors say I will be in this or worse pain for the rest of my life and I am going to have to learn to live with it. I am not sure I want to live with the pain. The pain destroyed my significant relationship of 4 1/2 years and I can't really have a relationship in my condition now obviously. The pain has destroyed my life and I am trying to get some support from people who might understand. My mother and sister deal with chronic pain, but not to the same degree as I do. I don't like to rank my pain with others because pain is so individual, but my sister can hold a job and although my mom is on disability, she functions better than I do in her 70s. I am 27. she does take MS Contin. I was taking 60 mg Oxycontin 3x a day and 4, 10 mg instant release Opana for breakthrough pain. Before Actiq stopped being covered by insurance, I was using that for breakthrough pain and nothing worked as well as that. I feel I am probably doomed to a life of opiates if I can ever get my doctor(s) to prescribe them to me again. I fear I will not get adequate pain relief again. My doc that used to prescribe me opiates tried to put me on the butrans patch but my other doc said that it was likely too weak to help the pain and I would just get dependent on them and so I said screw that. I guess the neurostimulator is something I should get. I have plenty of reservations about another back surgery because my spinal fusion , which a neurostimulator is not nearly as serious a surgery , was such hell. I need to switch my primary care physician, rheumatologist, and psychiatrist because they are all way too conservative. I have given them all a chance to help me and they just tell me I have to learn to deal with it. I dont want to deal with it. I can't deal with it. I know pain could always be worse and I am thankful for every day I am not in such pain, but if my pain continues to be as bad as it has been, even if it is not everyday, I absolutely cannot tolerate it. I am desperate to get out of my current situation
    babygirl6969 replied to chrisjb7's response:
    Chris, if the opiates help please take them. I feel the same way about them as you do. I am in so much pain and the only thing that helps is the opiates. I just ran out, 17 before my refill date and I am wondering if there is something else that will work the same way that is not addicting. Otherwise I fear I will have to go to treatment to get off of them. Please hang in there I understand what you are going through and I hope with all my heart that it will work out. Love and Hugs Felicia McCann
    davedsel replied to chrisjb7's response:
    Hello, Chris.

    I am sorry you are in so much pain and fully empathize.

    I strongly agree with the other poster - if the opiates help, take them. The risk for addiction is very low statically.

    I also would suggest some type of therapy to help you accept your situation. Yes, change doctors if you feel the need. Seek whatever treatment works for you. Do your research - there are many sites on the internet filled with great information about spinal problems and treatments. In the long run we all need to accept the reality of our situations and try to rise above. There are counselors who treat chronic pain patients. Find one and get the emotional help and support you need. Chronic pain affects every aspect of our beings - mind, body and spirit.

    I pray you find answers and relief soon.
    Click on my username or avatar picture to read my story.


    meaningfulc1952 replied to chrisjb7's response:
    Hi Chrisjb7,
    Wow, you are in a lot of horrific pain from what I just read. My dear you really should consider taking the opiates and not be
    in this hellish pain that you have described. If you have a dr.
    that will prescribe some strong medications perhaps you should consider taking the meds again. No one in this world should have to live in horrific pain. Especially when we have the pain drs. and other types of drs. that really should understand what is going on with you.

    Maybe they are afraid to put you back on strong meds because you are depressed and it sounds like you may be giving up.
    I don't know, but you do. Please don't do something to yourself and end your life.

    I used to have a best friend that had severe/chronic pain and she took her own life. Let me tell you that is not the way to think and leave your loved ones. Please believe me. I also had a son-in-law that passed away from taking too much medications and drank alcohol. The next day my daughter found him (her husband) on the living room couch and he was dead.

    You really do not want to do something like this. I can assure you that there many people here and where you live that would be pleased to help you.. You have to ask for help. I know all about how that feels. I am 60 years old and a woman. I have had severe/chronic pain since my 20's but I am still here.

    Chris, please seek professional help and see what your drs. recommend for you. You really do not want to check out at your very young age, do you? OMG, you have a lot of living to do still! OMG, I wish that I was still young and all of the things in my life were still happening. Some of my life concerns then were very difficult, but some were very wonderful too.

    Do you see that the cup is half full? You have the choice to get better with professional help. Your cup could get a bit fuller day by day I would bet you.

    Oh Chris, please don't do something that you will regret and your loved ones will have to deal with something like that. That is not the answer at all. I don't know if they are going to even let this message go thru but I guess we will see.

    I am so sorry that you have so much physical pain. You also are having emotional pain. It is clear as the day is long. Do you understand anything that I am telling you?
    Please seek professional help and keep us informed as to how you are doing. I am sending you many hopes and prayers your way.
    fibrofran17 replied to meaningfulc1952's response:
    Dear Chris, personally I would stay away from surgery, whatever they attempt to FIX will leave you with more trauma to your body no matter how great the surgery, and you will have to deal with all that too including more nerve damage. My two cents would be to do what you need to do to STOP THE PAIN so you can go from the dark back to Light and see your life anew without pain or at least less pain. Pain colors Everything. Your mood will automatically lift and clear and you will see that life has alot to offer you once the pain is subdued. I am in the process of switching from doctors that do NOT listen! YOu are obviously not drug seeking since your issues started so young and you are just trying to cope. Get some meds to bring down the pain so you can relax and cheer up abit and make good choices for yourself. I wish you the very best, take care of yourself. fibrofran
    cweinbl responded:
    Just one opioid added 9 awesome years to my university career. Just when I thought I would have to retire because of chronic spinal pain, this new medication arrived. Those additional 9 years were among the best of my life and certainly by far the peak of my university career.

    Neurostimulators only work for a small portion of chronic pain patients. Even then, they have a high failure rate. If the lead from the stimulator is incorrectly placed, or is it moves away from that precise location later, it renders the treatment useless.

    Surgery is required to implant the stimulator and again to remove it. All surgery entails morbidity. The success rate for prior spine surgery patients is about 50%. That's a terrible success rate for any surgical procedure.

    The intrathecal infusion pump also has its own shortcomings. If the catheter is improperly placed moves after implantation or becomes crimped or blocked, the unit is rendered useless. Then, more surgery is required to remove it.

    Neurostimulators and the intrathecal infusion pump are for patients unable to benefit from traditional opioid medications and physical therapy. I've tried virtually every procedure and every medication. Unless you're allergic to pain medications or you have unbearable side effects, stick with the regimen. Eventually, you'll find the combination of medications that works best with your unique body chemistry. I stress COMBINATION of medications. Chronic pain patients typically require a long-acting opioid (Oxycodone, Kadian, Fentanyl Transdermal, etc.) PLUS a short-acting opioid for breakthrough pain (Hydrocodone, Oxycodone, etc.). That's in addition to an anti-depressant (to inhibit the reuptake of Serotonin) and if you have referent pain, an anti-convulsant (Lyrica, Neurontin, etc.).
    An_253391 replied to cweinbl's response:
    Dearest Chris, I have had severe pain due to lumbar and cervical spine surgeries - with a cervical spine fusion being the worst part of my condition. I have also had fibromyalgia for 35 years. I never expected to live to 50 but alas, here I am. I would never imagined that having children and being married for such a long time could happen to me.

    I've searched like you for a solution, answers, help. I was prescribed opiates but I couldn't think or function properly after 2 years and I withdrew cold turkey which was stupid (9 rings of hell would be what that was like).

    All that said - you need to reset yourself that you can't find an answer or cure all. You need to focus on what's not broken. I was in agony with ice packs on my head and neck last week. Then Friday, I woke up and said - I want to change this mess. I started a mantra: God, the Great Physician, is sending healing and strength to my mind and body. I CAN FEEL IT and I am blessed. I know that it doesn't take away the obvious pain but until you shift your focus on what's working- you can see, you can hear music and movies, you mom and sister love you dearly. Reach out to folks who have pain and console them.

    I don't know why we were chosen to suffer like this but the truth is everyone suffers in their own way.....that''s the human condition and it takes bravery to persevere. Find those things that lighten your load - and pace yourself around your horrible moments.

    I'm usually a 12 on a scale of 10 in pain but I can't possible function if that's all I think about.

    I urge you to think about that. Reach those who are suffering even more. Its therapeutic to know that you may not be the worse case there is. With many loving thoughts, KC
    chrisjb7 responded:
    Thank you so much for all of your suggestions. About 2 weeks ago I was prescribed Opana 10 mg 4X a day. This is what I was on except I was also on 60 mg of Oxycontin The opana has almost completely taken away my neuropathic pain. The back pain has become a little more tolerable.

    6 days ago I was in a horrible car accident. I went off the road and hit a pole that launched me into the air, I hit the top of a truck which flipped me onto another car and then flipped again and landed upside down. I was able to get out of the car, which was on fire. Nobody else was hurt thank god. When I was in the hospital, they could not control my pain. I had no fractures or broken bones thank god, but they still kept me in the hospital for 3 days because they could not prescribe me strong enough medications (the hospital can't prescribe you any of the strong opiates to go home with). Therefore, I was on a dilaudid drip for 3 days and then they told me to go home and take my opana as well as the norco they gave me. I also have some older pills and have been able to keep the pain almost under control. The scary thing is that I have such a high tolerance to pain medication. However, I somehow have been able to keep the pain under control without having to take an insane amount.
    I still obsess thinking about if the opiates will stop working, which I know is bad for me emotionally.
    Ever since i restarted the opiates and have had my pain go down somewhat, I haven't been thinking about ending my life.
    It is surely hard with my family except for my Mom and sister who has chronic pain because other family members can't truly understand what I am going through.

    The most significant problem is that I was basically addicted to alcohol at one point in my life. I used alcohol mostly to kill the pain or to go to bed at night. This has created problems with my psychiatrist because she will no longer treat me if I don't tell my new pain doctor that I, as she put it, am an addict. I am afraid to tell my pain doc this because from what I have read online, addicts with chronic pain are the hardest to treat. I am fairly certain, and my psychiatrist agrees, that my pain doc will stop giving me opiates if I tell him this. My psychiatrist (new one), and my other doctors do not agree with her, but that because she talked to my old pain doc who told her I asked for a refill early a few times over 7 years, that I am addicted to pain medication also. The fact is I know that I am not an addict when it comes to pain medication. I do not like opiates which is why it is such a struggle internally to decide if I should even take them.
    The fact is I will have to leave my new psychiatrist.
    I do not want to be considered an addict when it comes to pain medication just because I drank before.
    My new psychiatrist also refuses to let me continue on Adderall for my ADHD, which when I started, I went from an average student to top of my class with a 4.0 GPA. This is why now that I plan on going back to school, I am going to leave her anyways because I don't want to screw up my future because a doctor that has only known me for 3 months acts like she knows more about me than my doctors of 10 years.

    Adderall was never a drug I would become addicted to as it doesn't do ANYTHING but let me focus. I know friends who take it for the feeling I guess it gives them, but I do not have this feeling at all when I take it.

    overall, I guess I should find a new psychiatrist who is not so quick to label me and thinks they know more about me than my other doctors who have known me longer.

    My other doctors, even ones I saw for addiction, have said that opiates are not my problem, alcohol was or is.
    I no longer drink. Over past 3 months, I drank 2 times and both were because I was not taking opiates and I could not control the pain. Everybody has now agreed that I should take a pain pill versus drink for pain. I was just so influenced by my new docs not to take opiates like it was evil.
    annette030 replied to chrisjb7's response:
    My friend is an alcoholic and also takes pain meds as needed, he has no trouble getting them at all from the doctors and dentists he sees. I have to agree with your shrink, you need to be honest with you pain management doctors, and whoever prescribes your Adderal. Let him decide if you need it or not. Many adults used to be kids that grew out of ADHD and no longer require meds for it.

    If your other doctors really knew you longer they would know your alcohol history. You are only 27 years old. If you started drinking at less than 17 (ten years ago), your brain was affected worse than if you started drinking as an adult.

    By the way, you were out driving a car and got into a wreck very recently, you were on opiates then, were you also drinking, even a little? I hope not, since you had just started a new opiate regimen.

    I had elective surgery a couple of years ago, I was certainly up front with my surgeon about my 15 years of opioid use, and the hospital had no problem managing my pain. Nor did I have any problem finding a surgeon.

    Take care, Annette
    terriblespine replied to annette030's response:
    If you have to you have to but drugs are a dangerous path to take and they do stop working.
    carrotcake13 replied to fibrofran17's response:
    I agree..I have been dealing with this disorder for the best part of 28 years. I just recently read a book that has changed my life. The book is The ABC's of dealing with chronic pain by Dr. Tim Sams. It is not available in tablet form. Try Amazon, and some privately owned pharmacies carry it. I wish I had found this book 10 years ago. As far as surgery, she is right. Every trauma on you body will leave you with still more pain to deal with. This book and an excellent pain PHd doc has changed my life. I use bio-feedback,and meditation,I also us physical therapy...sweetie you have to keep your body moving. I know it hurts, just set your limits. Please get the book, it is amazing. Good luck!
    ctbeth replied to terriblespine's response:
    Both statements you made are wrong.
    ctbeth replied to fibrofran17's response:
    So your take is that, no matter what the situation, everyone should avoid surgery?

    Is that not close minded and ignorant?
    Anon_57995 responded:
    Should you go back on opiate pain medicine ( at age 27).

    - yes, of course. If your pain requires opiate management for you to live a meaningful and satisfactory life, then your age really has little to do with the decision

    Will they stop working, you ask

    - No, no, no. They will not stop working! Your body may develop some tolerance with time, but they will not stop working. Pain management doctors have methods to help you get adequate pain relief while taking tolerance into consideration.

    Spinal cord stimulation is not usually the first treatment modality. Usually, successful pain management with spinal cord stim will reduce the amount of opiate needed, but most still need some med

    You're not sure that you have a choice

    - you always have a choice

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