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    Old 05-25-2004, 11:11 AM   #1
    Bugle4m
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    Looking for advice and alternatives to the drugs and pain!

    Iím not sure if I should post this or just continue to keep this inside, but here goes. I am a retired military officer, and have been diagnosed with an inoperable fracture of my lower back (L-5, S-1). The fractured disk is sliding forward to help complicate things, and I have degeneration of the area to boot. Along with all of this I have been diagnosed with fibromyalgia. All I know is I hurt, all over, and all the time. I have traveled extensively to see if there is any help through surgery, but each doctor I see all basically say the same thing; as long as I can maintain some sort of lifestyle, I should not consider the surgery, because it is so radical, and no-one will make any guarantees about reducing my pain levels. Several doctors believe it will only increase my pain.
    My problem, and why I write, to this board is my medications usage. My doctor has presently prescribed Oxycontin 80mg in the morning, 40mg in the afternoon, and again 80mg before bed. I also take as many as 6 Tylenol 4ís during the day for break through pain. I was raised in a family that taking anything for pain was a sign of weakness, and the militaryís idea of pain therapy is to take 2 aspirin and more P.T. (Physical Training). Anytime I showed any symptoms of pain, everyone thought I was faking it, or milking it to get out of duty since I could not show a wound. I originally started out (upon retirement) with 1 Tylenol #3 as needed, but moved onto Tylenol #4ís. I always felt guilty for taking the meds, and would hold off until the last moment to take my pain meds, and would be constantly in bad moods because I was always hurting. My poor son, he took the brunt of my anger, and for that I am truly sorry. My doctor eventually moved me onto Oxycontin twice a day, at 20mg per dose. Well, I quickly acquired a tolerance for that dosage, and progressively increased the dosage. Now Iím at the above mentioned levels, and feel guilty for taking them as well. My doctor has also prescribed 150mg of Wellbutrin to help with the feelings of weakness, and the depression associated with hurting all the time. The Wellbutrin has helped my moods dramatically. I tried to get off the Wellbutrin in the past, but my moods and feelings of depression quickly came back. I wonít try that again!
    The reason I write, is to find out if there is any alternatives to what I am taking? I want to decrease my usage of Oxycontin, but the withdrawal symptoms, are horrible. Again, I hurt all the time, so I go back to my usual dosage. Is there anything out there to help with the withdrawal symptoms? I have a couple of acquaintances that had illegal problems with the drug, and both ended up in a detox hospital to get off the drug. Everything I read just reinforces my fears about coming off the drug, if I can ever do it. I try to just accept Oxycontin as a part of my life. But I used to be a pilot, but have been grounded because of the drug. I have dreams of getting back into the left seat again, but they are probably just thatÖdreams. I donít know what else to do. I get even more depressed thinking about the future (i.e. increasing the OC), and the possibility of so much pain getting off the drug. Iím afraid of telling anyone about taking so many drugs for the pain. My doctor keeps pretty close tabs on my dosage (sees me once a month at a minimum), but I fear going back to the pain if he takes me off of it. The Oxycontin gave me the opportunity to be pain free, and I have really grown fond of that feeling. Maybe I have become overly sensitive to any pain since I have been in pain for so long. Any advice would be greatly appreciated. Are the meds too much? Am I taking too many Tylenol #4ís and will they eventually hurt my liver? Is there anybody out there who feels like I do, or should I be seeking a psychologist instead of a message board? I know I am not the only person who hurts, but it sure feels like it, especially when I talk to anyone about my pain. My family has been wonderful with their support. I guess itís all in my head. I am just looking for someone to listen to me with out the fear of judgment, and advice from someone who is going through the same thing. Thanks for listening.
    May God bless all those who suffer in silence!

     
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    Old 05-25-2004, 12:32 PM   #2
    khoff
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    Re: Looking for advice and alternatives to the drugs and pain!

    Bugle4m -

    I am sorry for the pain you must be going thru. I have been on this board for awhile, and I can say with complete confidence that almost everyone on this board takes some kind of pain medication, and many takes some type of anti-depressant.
    Your injury is not the kind that will get better with a minor pain killer, or anti-seizure med like neurontin. Like you said, surgery may not work and there is no guareentee that even if you did have it and it did work, you would be pain free.
    May I also say that since most people on this board and those who suffer with back problems, fibromyalgia, CFS, etc... take pain medicine, I would think not one of them considers themselves to not be tough enough or strong enough by taking them.
    Let me ask you this, if you were shot and a doctor offered morphine, would you not be strong by taking it? If you were in a car accident and broke many bones and had internal damage, would you refuse pain meds too show you were strong?
    Pain meds were invented for those in pain. You are in pain due to physical diseases and structural body problems. You need pain meds. The question now is which ones. Tylenol in high amounts (equalling 4000mg or more) is very toxic and can cause bad liver problems.
    Oxycontin, though strong, can also have many side effects especially the unability for clear headedness.
    My advice would be to talk to your doc about methadone. Yes, I know it sounds starnge, but methadone for chronic pain is quite common. It is stronger than oxycontin, requires less of a dosage, has much less need for increased dosage do to it's half-life, and those who take it say it helps there pain and allows them to feel normal. No dullnesss or mind lethergy.
    I would do as much research on it as you can, and you'll see this pans out.
    My prayers are for you.

    - Ken

     
    Old 05-25-2004, 01:11 PM   #3
    sherry47
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hi Bugle,

    First, welcome to the board.

    I so truly understand what you are saying. I am an Army brat. My dad did 21 years service, so with that said, I know exactly what you are talking about when it comes to being "strong". Physical weakness was frowned upon in my house. I have had to deal with my own issues when it comes to taking pain medicine. I have talked with my pain management doctor about my issues. He basically said what Ken said. He told me I wouldn't quit taking my asthma meds so why would I consider stopping my pain meds, they were both for medical conditions. I do understand.

    I had a spinal fusion in January. My surgeon told me before hand that it would not cure my pain but would hopefully reduce my pain. I waited almost 3 years before having the surgery. It did not eliminate my pain, it did reduce my leg pain, but I still deal with horrible back pain and some leg pain. I think the surgery route is an individual decision. You are going to have to come to terms with the fact that without pain meds, you will not be able to have any quality of life.

    I have had to tell some "concerned" family members to back off, that my medicines were between my doctor and myself. I also suffer from severe depression and cluster headaches. My PCP says this is all related to chronic pain. I am awaiting an appointment with a new Pain Management specialist who is supposed to be able to help with the psychological issues as well as the pain issues. He's a Neuropsychiatrist. They deal with chronic pain patients and the issues we deal with. I was seeing a regular psychiatrist, but because he had no dealings or understanding of chronic pain patients, well lets just say that was a bust.

    I'm glad your family is supportive of you. That is over half the battle. I also picked up on the hint about your son. Take it from someone who knows, I'm sure your son has forgiven you and has nothing but the greatest of respect for you. My father had issues about being able to show affection, but I have a great respect and love for my dad. He would do anything in the world for me. Actually, he has been talking over with my mom moving into my neighborhood to be closer to me because of my health. They currently live about 30 miles away.

    It's all a mindset and it's hard for anyone to accept their physical limitations.
    It can be especially hard for someone who has had it drilled into them to keep pushing and don't accept any physical limitations. That no pain no gain attitude. Now you have to listen to your bodys pain. If it hurts, STOP. You are just going to make things worse.

    I know you will make it. Anyone who makes a career out of the military has to be mentally strong as well as physically. You have already proven yourself. Stop trying to prove something to anyone. It's not necessary anymore.

    God Bless,
    Sherry

    P.S. I considered not mentioning this but upon further consideration thought it might help. My father was dx'ed with bladder cancer 4 and a half years ago. I saw him go through hell. He kept up his strong facade around us, but my mom told me about some of his weaker moments. He went through chemo, lost his hair, became gaunt, and never missed a day of work. Went to work throwing up... that type of thing. However, he would sometimes tell my mom he couldn't take it anymore. He told her if the cancer came back he would not go through chemo again. When they removed his bladder they also had to remove his prostate. This caused him the greatest distress. He told mom that he felt like he was no longer worth anything as a man. He had a lot of mental things to deal with, but he overcame them as I am sure you will. His scans last month turned up 2 lumps in his lungs. We don't know where this is going yet and we don't know if he will go through chemo again. He is the strongest man I know. I am the one he has chosen to make any final decisions if he is not able. He wants to be allowed to die with dignity. It will be the hardest thing I have ever done, but I will follow his wishes if it comes to that. He is the strongest, most dignified man I know, and I refuse to let him lose that in the end. All I can do for now is pray that the cancer didn't mastitize. Pray that the lumps in his lungs are not cancerous. By the way, my dad did take morphine during his last bout with cancer. The only reason he stopped it was because he was hallucinating. So, you see, even the strongest military types will utilize pain meds when necessary.
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    Old 05-25-2004, 02:12 PM   #4
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hi Bugle, You sound alot like my dad, 26 years as a naval aviator. After he retired he did learn Biofeedback to deal with the pain of an old cervicle fusion when he broke his neck puncjhing through an A-6 canaopy that didn't clear. He is able to get substantial relief for more than just the period of time you are relaxing, which seems to be most folks complaint. He uses a form of Guided imagry to obtain the state he does. But flying and meds definitely won't mix.

    MY story is such a mess right now, 3 failed surgery and I went to doc today about an Intrathecal morphine pump. He thought I was there to see what he could do for me. He offered the exact same surgery I read about In a paper about long fusions to the sacrum. T10-S1, with a pedicle screww in both Iliums and a bar running across connecting to the sacrum to take the weight of the sacrum and place it on the Hips. Scarry crap being the guinea pig of unproven techniques and hardware.

    I don't recomend surgery often but if you want to fly again, You best chance at stabalizing your spine may be surgery. I watch those super surgery shows with amazing recoveries and wonder what I did wrong, why it works for some and not others. There is no answer, Sh&$ happens.

    The IT pump may be an answer as far as pain, especially if this prooves to be as effective as it looks.
    ........................................ ........................................ ..............
    Elan Achieves Primary Endpoint in Prialt Phase III Trial
    Wednesday, January 07, 2004 - 11:12 AM PST
    Amendment to New Drug Application Expected to Be Filed with U.S. Food and Drug Administration in Second Quarter

    Elan Corporation, plc today announced that its recent Phase III trial for Prialt(TM) (ziconotide) met its primary endpoint in patients with severe chronic pain who had not achieved pain relief with other therapies including intrathecally delivered morphine. In the double-blind, placebo-controlled study, patients taking Prialt achieved statistically significant improvement at Week 3 in the Visual Analog Scale of Pain Intensity (VASPI) score, the most commonly used pain assessment scale for clinical trials. In the company's analysis, the treatment appears to be safe, efficacious, and well tolerated. Based on the positive results, the company expects to file an amendment to its New Drug Application (NDA) with the U.S. Food and Drug Administration (FDA) in the second quarter of 2004 and to bring the treatment to market no later than the first quarter of 2005.

    Prialt is the first in a new class of non-opioid analgesics known as N-type calcium channel blockers, administered intrathecally for the treatment of severe chronic pain. Elan submitted an application for approval for marketing Prialt in the European Union in May 2003.

    Dr. Lars Ekman, executive vice president and president, Research & Development, Elan, said, "We are very encouraged by these definitive findings with Prialt and believe that this is significant news for patients suffering with severe chronic pain, many of whom are not now adequately treated. This study fulfills the clinical requirement in response to the FDA's previous approvable letter, and upon submission, we anticipate a six month review for the amendment to the NDA."

    The FDA had previously issued an approvable letter for Prialt, in which the agency had requested additional information. This trial was conducted in response to the FDA's clinical request and designed with their input, studying 220 patients with severe chronic pain to demonstrate the efficacy and safety of lower doses of Prialt and a slower titration schedule than was used in two previous Phase III studies. In this clinical trial, there were few serious side effects, with an incidence similar to placebo. These data will be presented at a major scientific pain meeting this year.

    As a non-opioid analgesic for patients with severe chronic pain such as neuropathic pain or pain secondary to cancer, Prialt addresses a significant unmet medical need. About two million patients in the U.S. with chronic pain fail to respond to existing comprehensive treatment. Of these, about 300,000 may be considered as potential candidates for intrathecal treatment, which could include Prialt. In order to make this treatment available to patients during the review process, a Treatment IND to make Prialt available on a limited basis to select pain centres in the United States will begin in the first quarter of 2004.

    >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >>>>>>>>>>>>>>>>>>>>>>>>
    Bugle, But even if this totally manages your pain, could you still fly with the instability, take the brunt of landings, pulling G's, are you talking going comercial or continuing flying military aricraft?. Military isn't built for comfort and although pain can be controlled you can't loose function of your legs while in the air after 6 or 8 hours. So military Vs comercial may make a difference.

    Stabalizing the spine may be the only answer and surgery may be the only wauy to do it. Once the spine is stable you can work on pain management. You do have lots of options for PM but you also have mechanical problems that do need to be fixed. I understand the dilema. I was offered an experimental surgery today after a 3 year decision to have the pump implanted after 3 failed surgeries.L1-S1

    You do have alot of deciding to do. The web site spine universe has the latest info on what's new with surgery, the latest trends and newest techniques and hardware. I can't post the link but it's easy to find.
    Good luck and welcome aboard, Dave
    "Another Navy brat" I never really got the brat thing. Moving every 18 months and 10 month cruises wasn't what I would call being spoiled. LOL

    Last edited by Shoreline; 05-25-2004 at 02:16 PM.

     
    Old 05-26-2004, 02:36 PM   #5
    Bugle4m
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    Re: Looking for advice and alternatives to the drugs and pain!

    Dear Kennethhoff, SGibson, and Shoreline,

    Thank you all so very much for the words of support and understanding. I understand that I have big decisions to make in the near future, but each one scares the heck out of me. I too came from a military family; with both Grandfathers career Navy men. One a Rear-Admiral lower half, and the other a commander. Each spent over 30 years, and served through WWII. The Commander was assigned to the USS Sea Wolf all through WWII, and served as the sub's medical officer. His idea of taking care of the pain was to bite the proverbial bullet. My father didn't retire from the military, but both parents had to suffer all the mental anguish associated with living though fathers absent most of their lives, and going through hell upon their return from sea and the war. My father died of a TIA (transient ischemic attack), simply because he was afraid of doctors, and he too felt weak for going to doctors, and using ANY medication. He would not even use aspirin, or anti-fungal cream for athletesí foot. His philosophy was ďThe body will take care of it if it needs fixing.Ē
    Sherry, I am so very sorry to hear about your fathers medical problems, and I will say a prayer for his recovery. The biggest fear is the not knowing, and the total invasion of privacy and self esteem. This is the biggest reason I refuse surgery on my back. I am deathly afraid for my wife and son. The doctor told me that the surgery would keep me bed ridden for at least 3 months, and then another 10-12 months of physical therapy and recovery after that. I just canít bear the thought of being totally dependant upon others for everything. It actually makes me want to vomit when I talk about it with anyone, especially my wife. She doesnít even bat an eye when talking about taking care of me for that amount of time, even when Iím almost in tears thinking about it.
    Shoreline, my flying is totally civilian now and personal in nature, so the problem with my back is minimal on my ability to command an aircraft. The only problem is my mental clarity while in command. I know that I could do it, but the FAA is very strict on the no drugs in your system rule, and would revoke my license if I informed them of the meds Iím on. At this point I have not had to take another medical exam, and my grounding is self imposed. I do this because I could not live with myself if I ever hurt someone in my aircraft or on the ground because of my meds. So at this point my flying days are over, and it saddens me to see that chapter in my life come to a close.
    The Neuropsychiatrist Sherry spoke of interests me. Since I live in such a remote area it would be impossible to find one in my area, so if I did look for one, I would have to travel to see him or her. One of the hospitals just opened up a pain clinic, which is about 50 miles away from me. However, they do have a psychiatrist on staff. Maybe I should look into them. This is the reason I wrote to the board; to find others who truly understand what I am going through. My wife tries her best, but itís like explaining to a man what its like to be pregnant. You canít!
    Ken you spoke of 4000mg of Tylenol being toxic to the liver. Is that in one dose, or within a twenty-four hour period? The six Tylenol I am taking now adds up to 1950mg per day for me. This is one of my biggest fears. What happens to my liver? If I damage it, what options will I have for pain relief then? I am so afraid of being on so many pills, and what it is doing to my overall health. I know that these are questions I should be talking to my Dr. about, but Iím sure if he was concerned, or if I was doing too much or even on the border, heíd let me know it. He is a very good family doctor, and I trust him literally with my life. However, heís a general practitioner, so this is all out of his league, and he knows it. He has referred me to other doctors as far away as Seattle. He sent me to the University of Washingtonís spinal center. They are (supposedly) on the cutting edge of spinal research (no pun intended). They too told me the same thing as everyone else. One doctor, told me to not look at being addicted to pain killers as an addiction, but to look at it as a continued therapy. I try, but itís hard. Especially when Iím at a social function, and I have to pull pills out of my pocket, and take them at the table. It always brings up the same conversation ď SoÖ howís your back?Ē This is a topic that I am sick of talking about to others. People seem genuinely concerned about me, but I just get tired of saying the same thing, over and over again. It just makes me feel worse about the prognosis, and more like a weak person. I know I shouldnít feel like this, but I canít help it.
    I could continue all day about this topic because I feel like I am talking to myself and not directly to another person and it makes it easier, mostly because I can truly think about my feelings before I put them down on paper.
    Again, I ďThank you,Ē all so very much for the replies and the words of encouragement. I REALLY APPRECIATE IT!!! I wish you all the best and I will keep you in my prayers; asking the lord to give you all strength and to ease your suffering.
    Best Regards,
    Mark

     
    Old 05-27-2004, 07:23 AM   #6
    feelbad
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hey shore, is that ziconotide that new med that is made from sea snail venom?I was reading an article on that just last week.Sounds very promising.

    Bugle, my heart goes out to you in what you are having to deal with.i just went through a surgery this past sept that I did not want to have but I was damned if I did and damned if I didn't,you know?either way that i would have gone with this, i stood an extremely high chance of coming out of it paralyzed.i had what is called a cavernoma that grew inside of my spinal cord.It is basically a group of low pressure blood vessels that the drs said I was born with.everything was fine until i hit 40.This also is the normal time for these things to finally show themselves.It had already bled once and the neurosurgeon told me that the likelyhood of having another was extremely high,only this time it would have cut off the remainder of the open space in my spinal cord(it was already at 4x6x8mms and took up approx one third of the cord space).i had a really big decision to make here and had no clue as what my next step would be.I am not normally a very religious person, but boy, that sure did change.I talked with friends whos opinions I really had respected over the years and many of them gave me alot more things to think about,and things that never had occured to me.I also explained my situation to them in detail and then asked them just what they would do and how they came to that particular decision.This gave me alot of really great insight.but the biggest thing for me in helping me make the ultimate decision to have the surgery was talking with my husband and being assured that no matter what the outcome was,he would still be there for me to help me deal with all that would follow after the surgery.It sounds like your wife and son would always be there for you no matter what?My husband told me that for all that I had done for him during the past 23 years of marriage ,he felt that he owed me some payback now and it was his turn to take care of me.i was really amazed at this statement as we had seperated for a few months last year mostly due to the fact that,in his words, i just wasn't 'fun' anymore.well excuse me for not wanting to go out dancing the night away when my pain levels were constantly running at like an 7-8 at the time.but through lots of counseling and him really for the first time during our whole marriage seeing what were the most important things in his life,when he came very close to losing them,i have the most caring husband ever now.and he proves it to me everyday.and takes time off of work to take me to my PM appts and therepy and doing things around the house that he once considered womans work.

    Unfortunetly bugle, there are no 'easy' answers here for you.this big decision ultimately will rest upon your shoulders.i know that losing some of my independance has been one of the hardest things to except,I have always been a very independant woman and always did things for myself.I rarely ever asked someone to do things for me that i could easily do for myself.I just kept thinking of that wonderful old serenity prayer/Accept the things that you cannot change?it was not easy at first,I wont lie to you there.It sucked.I would get so frustrated and feel so guilty for having to ask everyone around me to basically be my maid.God i hated that.I still do but i have learned (through alot of counseling,and I highly recommend this for you too)that this IS my life now.Pretty soon you don't really think about it much and the things that you ask your spouse to do or your children just become pretty much the normal routine.and the thing is that in most cases they actually WANT to do things for you as it makes them feel good to know that there is at least something,no matter how small that they can do to try and help you or just make you feel better or more comfortable.You know that helpless feeling that you feel? well, they are feeling it too.they want to help but just don't know how to go about it.

    i also wanted to mention to you that there are many other meds out there besides the ones that contain tylenol.I use oxy IR for my break through pain.It is basically percocet without the cet,no tylenol.i would dicuss this with your doc.the amounts of tylenol that you are currently taking in aren't really even close to the max dosage for the 24 hour period,but the less tylenol that you have to take the better as it can be hard on the liver if you are using it every single day over an extended period of time.

    i wish you luck bugle.remember, you came to the right place for support.the people here are just wonderfully caring folks who all have one big thing in common with you.PAIN.Take care and if you need us, we are here for ya. marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 05-27-2004, 11:30 AM   #7
    Shoreline
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hey Mark, You arer definitely not alone, You would be surprised by how many people go through the same emotions. Any of us could have written the exact same post.

    The spouse deserves better, we don't want to be a burden, Am I just weak? Why me? Should I just push her away and shut her out so she leaves and finds a better man? A life she deserves. What am I gong to do for the next 20-30 years?

    Thinking that far ahead is just too depressing so you continue to work through it one day or week or month at a time. You don't normally see improvement over days or weeks. But when you look back you will be able to see that you were not able to do this a year ago before you were on the right meds.

    I don't want to create a problem between men and women but so much of what a man is, is based on what he does for a living. When you go to a social event, what's the first thing a man is asked ? What do you do for a living?

    When a woman goes, the questions asked at social avents will be who did your hair, where did you find those shoes, dress, etc. Loosing the abilty to suport your family is the greatest loss to men.

    I don't mean to imply it's less devastating to a woman to become disabled and loose her former life. But women do seem to be more able to adapt to changing conditions without loosing all self esteem. If you worked and enjoyed your accomplishments I'm sure it's a great loss, But it seems women are more adapt to change. Quitting work to raise a child doesn't usually make a woman feel worthless, when the roles get reversed and the man is stuck at home and He starts feeling like the House Bi$#%.

    Any accomplishment in the past seems to go out the window when you're no longer the provider and source of stability in the family. My wife feels a huge burden on her to pick up the slack and feels trapped in her job because we no longer have the luxury of telling a boss to shove it. You have to bite your lip and stick it out once you have already lost 60% of your household income.

    Trust me, there is nothing you could say or feel that most of us wouldn't understand. Feel free to vent and also don't give up until you are able to have some quality of life even if it isn't doing your favorite things in life anymore.You find new favorites.

    The process of Social security is taxing, you feel like a bum for needing it but it takes years to get it., When you do, It certainly doesn't seem like anything to celebrate about. Whoopee, I'm officially disabled????

    The process can be long and slow. It took 2 years from my last surgery and almost a year of being bedridden to get approved for disability on my 3rd go round. Initial aps are usually denied, appeals get denied and then you ask for admin law judge hearing to determine your disability.

    If you need help in that area do ask. You only have so long to file. You must have worked 5 out of the last 10 years, so if you go 5 years without applying because you managed to save that much or have the equity, by the 5th year, regardless of how much you made and put into the system, you are no longer eligible because you don't have the work credits needed. You have to have worked 20 quarters out of the last 40 .

    Good luck and feel free to vent whenever you need to.
    Dave

     
    Old 05-27-2004, 12:26 PM   #8
    lindao1
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hi Mark and Welcome!

    I just wanted to lend my support to you as the others have done. You are in a difficult situation at the moment, both physically and mentally.

    Yep, we've all been there and continue to be there from time to time. Going from an extremely active life to barely existing physically, takes its toll on you, your family and even your friends. I've been in PM for four years. I've been on oxycontin for most of the four years. I, too, was hesitant about starting narcotics but the alternative was much worse. I know my future includes these narcotics. I even tried the morphine pump which didn't work the first time, but I plan to address it again when the time comes. It's comforting to know I still have some options. It's been a long struggle coming to terms with my limitations. And some days, I still struggle. But that's the nature of the beast.

    Please don't look at narcotic therapy as a weakness. It becomes a necessity when dealing with chronic pain. We take meds for diabetes, HPB, etc. and don't think twice about it. Chronic pain and the meds that help are no different. It's just that a stigma surrounds the use of opiates and most of that comes from an ignorant and sensationalistic media. My pain is a result of two failed surgeries (neck and back) brain surgery and fibromyalgia. The pain is constant but the medications allow me some mobility, so without them, my life would be alot worse. Sure, there are days when I wish so much that I could spend it in my garden or going for walks on the beach or whatever. But I just have to keep counting my blessings that I can do what little I'm able to do.

    I can't offer any opinion on whether to have surgery or not. That is a personal decision and one that needs alot of thought. I'm thankful that you have a caring and understanding wife and son. That's means the world!

    I just wanted to let you know that we are all here for you, no matter what you decide. We're really good at allowing others to vent, too, so if you just want to come here and holler, feel free to do so. By the way, I'm married to a former sailor (Gulf War Vet), so I've seen and understand the "military mindset". Just remember even though you are a military man, you are also human. Take care and keep us posted, OK? Linda

     
    Old 05-27-2004, 05:49 PM   #9
    carol632
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    Re: Looking for advice and alternatives to the drugs and pain!

    There is a method of pain control that I don't think has been mentioned....the intrathecal morphine pump. It certainly gives better pain relief without the highs and lows of oral meds and without the fear of damage to the liver. It does take a while to get it titrated (raised) to the proper levels, sometimes months. But it is worth the wait because the relief is so great. If you would like more information about it, please start a new post with morphine pump in the title and I will try to answer your questions.

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    Old 05-28-2004, 11:44 AM   #10
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    Re: Looking for advice and alternatives to the drugs and pain!

    Mark, welcome!
    As you can see, everyone here is supportive and willing to listen. You mentioned Seattle in your post so I thought I would put in a plug for the Swedish hospital pain clinic. I don't have back pain(mysterious lung pain after atypical pneumonia) so I can't comment specifically but....the doctors there that I saw seemed to be very knowledgeable and caring. One of the docs I saw was well trained in acupuncture and other 'Eastern' modialities. The head of the department performed my facet block. I'm trying to say that they seem to cover a wide array of treatments(including opiates) in their practice. They didn't force anything upon me or make me feel stupid when I asked to have something explained for the 4th time. It's someting to look into if you are looking for pain management and it's not too far to drive. I know they have some patients who drive from Yakima for treatment! I'm up north so I only have an hour to an hour and a half(depending on the lovely traffic) drive.
    I just try to take things one day at a time and not look too far into the future. I'm still coming to terms with the fact that I may have to take pain meds for the rest of my life. I'm not quite reconciled with that thought yet! I hope research will catch up to me.LOL!!! I hate the stigma attached to them. I've told some people that I'm taking 'long acting anti-inflammatories' because they asked what I was taking and I know they would react badly. I never tell anyone I'm taking Oxy unless they flat-out ask...I just say pain meds. Oxy has such a bad reputation. It's unfortunate for people who really need it. My 'real' friends understand that without it I can't get off the couch!lol
    Sorry to ramble. I just wanted to let you know that I understand.
    Good luck and take care.-Mush

     
    Old 05-28-2004, 12:31 PM   #11
    Shoreline
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hey Bugle, I ran across another device today for total vertebral replacement. It's a titanium telescopic device that has a hollow core they fill with bone.

    I actually watched them do the procedure on a recent episode of one of those Super surgery shows. Someone had just shattered 2 vertebrae and they completely removed the 2 vertebrae and a disc, Used an implantable titanium telescopic spacing device, Cranked it open to the normal gap and filled the section made to hold bone chips so that eventually you have a solid bone plug filling the gap,

    This adds strength to the hardware. It was pretty amazing, replacing vertebrae. Then the other day I saw a similar device used for the same purpose at the spine universe web site. Just do a search for Vertebral replacement or spacing devices. Just a thought if you want to really throw the dice or see what's out there.

    It's a tough decision , but there is a possible solution, I guess I could say that about my situtation too. The technology now to do long fusion's is very different than it was 5 years ago. I'm just not up to a 4th failed surgery, the last was 12 hours long and I still don't feel like I recovered, the new one is so complicated, replacing vertabrea seems easy. But who knows.

    The new thing to get solid fusions to the sacrum is to put a 60mm screw into each side of the iliem and run a bar across from hip to hip and screw through the bar onto the sacrum to create a platform too build the fusion up your spine. This puts the stress and weight bearing on your hips rather than the sacrum. They also do an anterior aproach, replace all the discs with bone plugs, remove ribs for donar bone.

    It wouldn't be an easy recovery having ribs resected from both sides/ having a posterior and anterior fusion plus the platform from hip to hip. This doc I saw seemed to think that would help me becaue I still am not fused at all from L5-S1 and I have broken hardware and bone hasn't grown into the threads of all the screws so they just rock back in forth in the vertabrea. No fun and some nasty crunching sounds.

    It would be worth looking at and talking to doctors involved or the manufacturer of the devices.The companies that make this stuff are really willing to talk to patients.
    Good luck, Dave

    PS as far as the tylenol, t's 400mgs a day for normal people, 4 doses of 100mgs is the max anyone should take.

    If you are a CP patient and need apap regularly then you should really cut that number in half, down to 2000 mgs per day. Have your liver checked every couple years if you know you have taken alot and if you drink and take tylenol it's really bad for the liver. Hang in there.

    Last edited by Shoreline; 05-28-2004 at 12:40 PM.

     
    Old 05-31-2004, 11:08 AM   #12
    Shoreline
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hey Bugle, If you want to see the vertebral replacement surgery it's being shown again today as part of a marathon on discovery health about severe trauma and recovery. It starts at 1pm EST and runs 4 hours, I don't know when they will show this episode but they did show it in the previews and it will be reshown today.
    Take care, Dave

     
    Old 05-31-2004, 02:19 PM   #13
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hi,

    Having read your posts I feel glad to be in the company of people who seem to have the same sentiments about trying to rise above the pain.

    I have been on the spinal board since my neck fusion of Nov 03 and low back microdiskectomy of April 04. I did really well and am now confronted, for some reason lately, with the same burning, tingling and sharp pain, which I had prior to my surgery from the disk herniation and compression.

    I knew there were no guarantees but I thought this part would let up a little and the pain I have now is so generally irritating through my body its hard to explain or reconcile. I am a very strong minded person and hate meds but today gave in and took Ty 3 and Percocet so I wouldn't be depressed for when my family attends at dinner.


    I need to be realistic now and deal with some of this through some kind of pain management as being proactive is part of my ability to cope with this I think. I am not angry anymore about why me, but merely just want to find a way of making my way through a life that is now radically different.

    I hope you can give me some pointers regarding how to commence the steps to get to a pain management program. My gp is useless other than to give me Perc or TY3 and my surgeon although great for the surgery and questions is out of reach until follow up. Do I look in the phone book for a clinic, do I ask for a referral and is it prudent to do this yet if I am not taking a gazillion drugs. I know about Perc withdrawal from the amount I limited myself to prior to surgery and I wonder if there are any other drugs that would avoid liver damage, and if Ty4 is the next step. TY 3 gives me the least side affects. I hate Percocet.

    Anyway, any input would be appreciated for me too.

    Last edited by nero; 05-31-2004 at 02:21 PM.

     
    Old 05-31-2004, 02:36 PM   #14
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    Re: Looking for advice and alternatives to the drugs and pain!

    Hi Nero,

    If your insurance doesn't require a referral you can make an appointment with a pain management center yourself. However, I think it would be better if you had either your pcp or surgeon refer you to the PM. That way, they can fax over your information and test results to the PM. It would save you from having to run all over the place gathering information to take with you to your initial appointment. My insurance at the time did not require a referral but I chose to let my surgeon refer me to a PM. I am now on an HMO so I need a referral for everything.

    If I were you, I would talk with my PCP and tell him I wanted him to send me to pain management because I was concerned about the pain meds. He should actually be relieved to refer you. It would show good faith on your part I would think. (It wouldn't look like you only want meds)

    I hope you can find an acceptable solution for yourself. Good luck.

    God Bless,
    Sherry
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    Old 06-07-2004, 05:26 PM   #15
    Bugle4m
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    Thank you so much to all who have responded to my post!

    I again want to say "Thank You" to everyone who has replied to my previous posts. I originally posted to the web site very reluctantly, but after reading the responses I don't know why I hesitated. I have literally sat here at the key board with tears welling up in my eyes from the response and words of encouragement I have received from people who don't know me. You all literally take my breath away. What is even more refreshing is that most of what is told to me is what my wife has told me for years; but I would not believe her when she told it to me. I will get down on my knees tonight and say a prayer for each of you tonight; thanking the lord that people like each of you exist in the world. Especially since there are so many bad people in this world that want nothing more than to hurt people; and then there are people like all of you who want nothing more than to just stop hurting, and are willing to help those who do. ďMay God Bless Each and Every One of You.Ē
    I am trying to keep my pain medication under control, but I find that I often use the drugs as a crutch. I frequently will go out and work extra hard cutting timber on my property (or other chores), and then take more oxy than I should to make up for the extra activity. I almost feel like its pain bingeing. I work harder than I should to maintain a sense of my man-hood, and then secretly take an extra pain med to cover up the pain because I did too much. I feel guilty for taking too many pills, but I also find that my body now craves the drugs, especially when I am home by myself, and board. Does anybody else wake up at night and start worrying about what the future holds, or start feeling guilty because you took an extra pain med earlier? I take my last dose of pain meds at around 6:00PM, and when I do, I wake up at around 3:30 to 4:00AM because I am hurting, especially when bad weather is coming. I am a human barometer. I live in a mountainous region that gets cold weather and lots of snow, and about 2 to 3 weeks before the cold weather get here I start to hurtÖhorribly! I just ache, all through my body. I have wondered if I am missing something in my diet, or am deficient in something. I canít understand why I hurt through-out my whole body but there is NO injury. It just doesnít make sense. I am going in for my monthly doctor appointment tomorrow, and I will ask my doctor for a referral to the closest pain clinic, which is 50 miles away. This is one of the drawbacks of living in a remote region. I have been reading as much as I can on chronic pain, and possible causes through the New England Journal of Medicine, and the local universityís library (one benefit of being an alumnus).
    Iíll quite rambling on, since I would hope people would read my posts. Again "Thank you" for all your kind words.

    Sincerely,
    Mark

     
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