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    Old 08-15-2006, 02:43 PM   #1
    agurl79
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    Question Pain coping program? ever heard of this??

    I have a few questions, I hope someone can answer for me. I posted here a while back, but have been in and out of the hospital so much lately that I haven't been on the computer much. A little background on me... I am 27, and have been having pancreatic problems for a little over 2.5 years... I was diagnosed with chronic pancreatitis a few months ago. I have been having some major pain control issues in the past year or so... I posted about 2 months ago about the pain management doc switching me from 4mg dilaudid every 4 hours as needed to ER Ultram 200mg once a day. Needless to say it didn't work and I am back on the Dilaudid. I had a celiac plexus block last week in the hospital that didn't work, and also they placed me on a Tens Unit, that hasn't done anything besides drive me crazy (short trip..lol).
    Now the pain management doc wants to send me to the cleveland clinic for an inpatient program for chronic pain. It is a "coping" program. They actually take you off of all medications and teach you how to cope with the pain. I hope I don't offend anyone but I don't think I could just "go to my happy place" and forget about it when my pain reaches a 9.5 on the 1-10 scale almost daily. So needless to say I am very skeptical about this...
    Does anyone know anything about this program, or one like it? or have any thoughts about it? They also put me on lyrica 75mg twice a day...

     
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    Old 08-15-2006, 06:16 PM   #2
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    Re: Pain coping program? ever heard of this??

    Hi Gurl 79, That's pretty much what all PM programs were prior to oxyContin hittin the market. Percs were used for post op pain and there was nothing besides dilauid but you had to be dying to get that.

    Pain coping will include something like bio fedback, self hypnosis or guided imagry. You will likely tdo PT twice a day, go to art therapy, ocupational therapy, group couseling, solo counseling, education of medication with RPh's, how pain works, the difference between chronic and acute pain. If the average joe woke up with the kind of pain you or I live with , they would go to the ER thinking something was terribly wrong. In acute pain, pain is a warning or response that something is wrong.

    The idea is to change your thinking about pain through a better understanding of chronic pain and having the tools to deal with it mentally and emotionally. You may end up back with dialudid in your med cabinet or a pump in your belly, but meds can only do so much, what you learn should help you from becoming one of the terribale statistics that follow patients that live with intracatable chronic pain.

    Hopefully you will have something to use when the dilaudid doesn't do the job. You don't have to agree with them on every aspect, but you should give it a try while your there and put what works for you to practice. What's the benefit in not particpating and trying?

    I'm not suggesting this is the best way to manage all pain, but when the goal of an implanted morphine pump is 50% relief, you do have to learn to cope with some degree of pain and learn you don't need medical attn every time you wake up feeling bad.

    You know the basics, they don't believe in opiates for the rest of your life. They are going to teach you non opiate methods and educate you about everything. Take what works and put it to use. There will always be a doc willing to prescribe meds, but anything you have to assist the meds or cope with what they can't do will only help. Back in the old days you tried everything else before you were given opiates to treat chronic pain. It does make it harder when you know meds do work and their methods may be iffy or limited. I've been through 3, month long programs . I use many of the stretches, excercises , relaxation techniques and put the knowledge I've gained to use. Having been through so many programs I understand that the meds my doc gives me are the last resort and I haven't been to the ER for treatment of pain because I know I have meds just as strong as anything they can give me.

    What didn't work or was just Voodoo medicine in my opinion, I left at the clinic. Take what works and use it knowing there are other opinions should this not manage enough of your pain. They aren't your last stop or only chance at finding relief.They are just a stone on the path that you either take along or leave behind in your search for a way to live with something you never could have imagined living with.

    Good luck and I hope you gain some valuable tools. That's the purpose in going. If you decide to go another route and just find a doc willing to prescribe LA opiates for the rest of you life, you may find yourself sitting in a room by yourself a few years from now wondering if you made the right choices. At least you will be able to say you know you tried and did everything asked of you.

    Good luck and take care. Dave

     
    Old 08-15-2006, 09:40 PM   #3
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    Re: Pain coping program? ever heard of this??

    LOL I almost spit the tea I was drinking.... thanks for my laugh of the day !!

    Last edited by HBMod07; 08-18-2006 at 07:23 AM.

     
    Old 08-16-2006, 05:54 AM   #4
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    Re: Pain coping program? ever heard of this??

    [removed]

    These methods are usually taught before someone is completely dependent on opiates and thinks there will always be a stronger dose or stronger med they are entitled too. These folks will never benefit from anything that involves their own particpation. If it doesn't come from a prescription bottle or through the needle of a syringe in the ER. Your right queenie, There's no point in trying when all you have to do is find a doc willing to give you increase after increase for a small monthly fee to get to "your happy place." It creates great repeat lifetime customers when all you do is pass out opiates and explain nothing about the effects they have on the rest of the body. We had another poster the other day that had no clue they would expereince withdrawal after removing a fentanyl patch after years of use. We need more docs like this that offer no hope and no way to deal with the things a pill can't.

    Why would anyone go through the hassle of loosing weight and learning about posture and core muscle strength to help a bad back or change thier diet to help pancreatitis when they haven't even gotten a chance to max out the new OxyMorphone product yet.

    Last edited by HBMod07; 08-18-2006 at 07:34 AM.

     
    Old 08-16-2006, 06:22 AM   #5
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    Re: Pain coping program? ever heard of this??

    Ok, just to set the record straight here, I have been living on a pretty much fat free diet for over a year, I have lost well over a hundred pounds, and for the past 2 months have been living on Boost Breeze resource nutritional drink. I've been through 7 major abdominal surgeries that each lasted at least 8 hours. Nothing has helped this pain. I have been to psychologists already who have tried to teach coping methods. I went through a period of about a month without using ANY pain medications and I was in sheer agony that ENTIRE month. I guess perhaps I should have added that information to my post. I just want to make it clear that I am not "going behind the ABC store to find pain relief, and am not in jeopardy of being black listed from the ER". I don't run to the ER everytime my pain is a little bit more than I can handle. The reason I have been in the hospital so much lately is that I haven't been able to keep fluids down over the past 2 months and I get severely dehydrated, and I had an ileus due to the inflammation around my pancreas.

     
    Old 08-16-2006, 10:20 AM   #6
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    Re: Pain coping program? ever heard of this??

    Hi Gurl, What I said about weight or drinking was not directed at you, It's advice for everyone to use some common sense. You may very well have spent a great deal of time with a nutritionist to deal with your problem, but nutrition is part of all pain syndromes and I would bet les than 10% of the posters on this forum have ever spoken to a nutrionist, psychologist or have done any type of counseling to learn to cope with what the meds can't do.

    I have no idea of what you weigh or what you have lost. My point was, if you don't try anything else, you won't have anything else other than meds a doc gives you. Pain meds can only do so much, Methods tought at the cleveland clinic are like tools you keep for those days or perhaps they may work well enough for some people they won't have to trade physical dependence for the ability to function.
    Queenees' sarcastic comment was just met with more sarcasm. All though we all may be living with pain, there is a difference from person to person. That's why there should be methods tought to deal with pain that doesn't require physical dependence on opiates.

    You may need opiates throughout your life, but it's silly to think you would spend 30 days with medical profesionals that deal with chronic pain every day of all types and all levels, that you wouldn't take something positive out of the experience. You may end up back on dilaudid, but you may learn some way to keep from having to go to the ER when the meds just aren't working.

    Sarcasm about alternative methods just fosters the idea that everyone is entitled to opiates and nobody should waste their time trying to learn to live without them or learn other methods to compliment or eliminate what opiates may be able to do.

    I knew nothing of your weight. That was a common sense thing that a clincic will tell a patient with back pain. Loose excess weight and strengthen and stretch. There is no harm in that advice, People need to learn to do it properly and take some responsability for their own health and well being.

    The idea that it's a waste of time when all you neeed is a more potent opiates is flat out destructive. Sugesting anything other than instant relief from opiates is the only way to manage pain is just as absurd as thinking everyone can learn self hypnosis or guided imagry and go to their "happy place" to escape pain.

    If someone has no other tools than pain meds their only option is to self medicate or go the ER when the pain meds aren't working. The idea of learning other methods at the cleveland clinic is to give you tools so you won't be tempted or need to self medicate, either with more pills, alcohol or becoming a frequent flyer at the ER.

    Neither comment was directed at you Gurl, but there is more than one answer to treating chronic pain and learning to live with what can't be entirely managed by meds alone. It may mean the difference between someone jacking their tolerance through the roof expecting complete relief and learning to live, cope and make the best of your life, living with what the pain meds can't relieve.

    I know what Queenee means by her "happy place." I've learned Self hypnsosis, Biofeedback and guyided imagry at 3 different month long clinics. No, you can't live in your happy place 24 hours a day. But if learning to spend 30 minutes to get your pain under control can prevent you from being labaled an addict at the ER when someone makes it a habbit to hit the ER once or twice a month, it's well worth the effort.. I haven't been to the ER for pain other than a heart attack on my 36 th Bday from living with BP in the 220/150 range for years frompain. Doesn't stress effect pain, don't you hurt more when your fighting with family or loved ones.

    Basically you opened a discusion about the difference between non opiate pain management and opiate pain management. Thinking everyone can learn self hypniosis and manage all their pain is just as absurd as thinking anyone that has any type of pain should be taking long acting meds and tradng physical dependence for pain relief simply because it's the easiest thing to do, is just as absurd.

    The last decade has coined this generations name, "generation RX" $ times the number of people are taking opiates now than they were in 1999. Is that because more people are in pain, or because more people know there is something better available than tylenol and can come to a forum like this, learn how to describe pain, use the quality of life mantra and justify their use of meds although no other method, no surgical consult and no effort on tha patients part to improve their own condition has been tried. I'm not talking about you, I'm talking about pain in general. I've seen folks respond to posts and tell someone that has had back pain for 6 months that there pain is chronic because it lasted more than 6 months and the best way to treat chronic pain is long acting opiates, some folks even make a drug recomendation without knowing anymore than the person has back pain.

    When that advice comes from someone that has never been to a PM clinic, questions why they would need a psychologist or why try something when you know opiates will gaurentee relief, it's very scarry.

    Unfortuntely looking for the fastest easiest way to solve a problem is human nature. If there is an easy way, that's what people want. The cleveland clinic isn't the easy way, but is an effective way for some people. Opiate dependence does have a price and docs aren't informing patients or there wouldn't be patients still baffled by the withdrawal they experience when they peel off their last duragesic patch becuase keeping the apt for a refill wasn't conveinant. I didn't realize pain management being conveinant was part of a decsion to seek treatment for pain someone claims is intolerable.

    Discouraging people from trying non opiate modalities isn't doing anyone any favor Queenee. Just because I made the decision after 3 failed surgeries, 2 sets of broken hardware and no further surgical options. For 7 years I want through surgery after surgery, a PM program after each surgery, I've seen a dozen PM docs and tried everything ever asked.

    Suddenly every doc that won't prescribe opiates is a jerk and a doc that will give pain meds to anyone that complains is a great doctor. After all, why bother with motrin when Percocet works so much better.


    Unfortunately tolerance and dependence occurs and it takes more and more to get less and less relief over the years. There is no absolute ceiling on the dose of opiates anyone can take if the dose is aproached slowly but every patient will reach a point where the side efects become intolerable to them or to their family. It's not OK for me to spend the rest of my life in bed even though I could easily justify it based on what's wrong with my spine.
    There are consequences to being dependent on opiates, opiates are not completely benign. Where is the harm in learning a non opiate method of managing pain if it may work or may keep you out of an ER when the dialudid isn't working.

    People are going to make their own decisons, My advice is keep an open mind ,keep what works and toss the rest, all were doing is getting opinions and going through the process of trial and error with different PM techniques. Unfortunately now in the present opiates for everyone society, no harm is ever mentioned and people don't want to hear about the negative aspects of opiate maint for intractable chronic pain. But it's not like everyones pain is intractable if they can make the decsion to stop meds because the doc ****** them off and asked for a UA or made them wait 31 days for a refill. When I went through PM opiates were the absulolute last resort. Now it's what every patient is told to expect by the majority of folks on these forums that use the meds themself.

    The suicide rate is 700 times greater among CP patients than it is for the general population , even with the opiate revolution and availablity of meds no surgeon would have ever prescribed following any operation. I have yet to see where supplying 400% more people with opiates has had any effect on the suicide rate among CP patients. That's because any doc that can write a script can proclaim themself a pain management doc. How many patients care if their doc is board certified as long as they get their pain meds?


    Good luck and I'm sorry if I somehow I offended you. Often when I reply I know many others read the post, so my advice isn't just for you, it's for anyone else that may want to know about alternatives like the CC. So I may speak in generalties or say you when I mean everyone that needs help managing their pain. You pretty much prove my point when you say has anyone ever heard of learning coping techniques? Good luck, Dave

    Last edited by Shoreline; 08-16-2006 at 01:45 PM.

     
    Old 08-16-2006, 10:48 PM   #7
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    Re: Pain coping program? ever heard of this??

    You go Dave!!!!! I thought i was reading about someone dealing drugs untill I got to daves reply. It sounds like a happy place is looking for a high instead of needed pain relief. I for one will try anything legal and reason to get my pain under control. I am open minded and if a pain clinic can teach me how to get through life without drugs or short of what I'm currently on, Where do I sign up for rhat. I have checked into pain clinic's and if there was one in my area I would go to it in a heartbeat. I may be fixing to settle my w/c case but I guarentee I will get enough that A pain clinic is in my near future. I am moving to an area that offers one. Anything I learn there is going to just help me control my pain instead of a drug. Thanks dave. I'd like to hear others point of views. TEXASCRITTER

     
    Old 08-17-2006, 12:09 AM   #8
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    Re: Pain coping program? ever heard of this??

    Oh Tex, In Queenee defense she's making fun of the Pm psychologist that teach self hypnosis , guided imagry, yoga or bio feedback. "That happy place" is is a pscyh technique to tune out the pain and concentrate on every detail of a better place and time where you don't feel the pain because you can imagine every feeling, smell, and sound associated with a place of peace. Whether it be laying on the beach with the sun on your body, or if you prefer the mountains or the desert or out on the water. If you have experienced it or can imagine it well enough you can use a technique called levetation to leave your physical body and pain behind. It takes a great deal of practice, but if you can focus on enough details of a happy experience, you can use this technique to manage pain or break through pain and hopefully bring your pain back under control. IN a clincal setting it's easiy to do with a shrink sort of talking you through the process from relaxing from your hands and feet to every muscle in your body and then taking it further, how it feels when your out on the water or on the beach or sitting on a bluff with the sun on your face. All these places have hundreds of sensations like smell, feel of sun or wind on skin, bristling of hairs on your arm, to imagining a warming beam of light that heals or destroys damaged or aflicted areas.

    It can be done, when I go through the process I can drop a 9.5 to sleep in about 30 minutes. But once you're up and walking around and the wife wants attn, or the kids want attn, every day life comes floding back and every muscle you were able to relax may tighten right back up. It's hard to maintain the relief you get from one of these mental excercises, but if you can't catch your breath because you hurt so bad, it's better than going to the ER to be called a junkie or wait 6 hours for a shot that last 3. It's just one thing they teach at PM programs.

    Bio feedback is basically this excercise while they measure specific things, either galvonic skin response or external body temp. IF you hurt and your arguing with you wife for example, your blood vessls constrict and this cools your skin temp, when you relax your skin temp rises from the increased blood flow. When measuring skin temp, I could rasie my skin temp from 84 degrees during perriods of tremendous pain up to 98 degrees and drop my level of pain dramatically. But at some point you have to snap out of it and come back to the real world and it brings the pain back once you ave to leave your 'happy place'. It's just a tool used to manage extreme pain.

    You might have seen folks have dental work done without novacaine or surgery performed without anesthesia on TV and it's how people perform great feates of mental strength enduring physical pain. Walking on coals, hanging from hooks through the skin is all achieved by leaving your physical body by taking your mind somewhere else. It takes a good 20 or 30 sesions with a psycholoist or facilitator to reach the point where you can do it yourself without someone talking you through it. At least that's what I assume she's talking about when she makes fun of 'going to your happy place."

    It may sound strange, but folks in the east have been unduring and demonstarting amazing acts of mind and body control for centuries. I saw a demonstration by a professor at a local university . He was from Japan and young man had come from japan to live with this man to aprentice and study martial arts under his guidence. During the demo, the teacher beat this kids shins, back, chest, thighs with all his might and even gave him a few shots to the jewels with a bamboo Kempo sword and the kid never flinched or showed a sign of pain. The young man never spoke a word, didn't bruise and this is acomplished by levetiation or whetever term you feel more comfortable with. But bsically he seperated his mind from what was happening to his body. That's taking the technique to the extreme, but shows there really is no limit to what someone can endure with a trained mind and body.

    Nobody expects a CP patient to put on any kind of demonstartion like this but with bio feedback seing you have actually raised your skin temp 12 or 14 degrees in a matter of minutes was proof enough it worked for me. This is just one techniue someone would likely learn at a place like the clevland clinc and some not so well known PM clinics that don't use opiates. The meds actually cloud the mind and make it more difficult to achieve a deep state of relaxation and the concetration to create the detail to escape your body.

    I'm not so foolish to think you could go to a cancer ward and yank everyones meds and teach them self hypnosis without causing a great deal of suffering, but if someone knew self hyopnsosis, it's a pretty safe bet they would use less medication and have a betterr end of life experience if they are able to acomplish levitation or mind body seperation when the pain is unbearable and meds just won't won't kill it all without knocking them out. Some people want to be awake every minute they can when their days are numbered and that means dealing with the pain.

    This is just one technique though, combine it with other techniques, education, therapy, PT, the right meds and interventional procedures and there are folks on long acting pain meds that could probably function without them if they had been offered an alternative before they found the instant relief from opiates. Even pain meds have limits. IF a doc gives a CP patient a long acting med and aditional meds for break through pain, aren't the BT meds supposed to be used to keep you out of the ER when the pain truly spikes? Unfortunately many patient incorporate their BT meds into their daily regemin so that when a falir up does come, the break through meds are no more effective than every other day they take the max dose allowed. There are exceptions where docs simply mis-manage long acting and short acting pain meds and leave the patient dependnet on BT meds to get through the day, but that's the exception, not the rule.

    Somehow I have managed to stay out of the ER for 13 years when oral meds were simply not working. Whether it was chonic pain or post op pain that was under medicated.

    People don't die from pain, but they do kill themselves and do other very stupid things when they don't have the coping skills to deal with chronic intractable pain. So it's not a joke and it's in each patients best interest to be expected to learn some coping skills before they bust out the most potent pain meds available. Otherwise they may be simply giving someone the means to kill themself and nothing more.
    Take care, Dave

    Last edited by Shoreline; 08-17-2006 at 12:24 AM.

     
    Old 08-17-2006, 04:28 AM   #9
    beebers
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    Re: Pain coping program? ever heard of this??

    new poster, long time lurker.

    well said dave. if more people had your attitude, it would make these boards way better

    Last edited by beebers; 08-17-2006 at 04:44 AM.

     
    Old 08-17-2006, 09:19 AM   #10
    agurl79
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    Re: Pain coping program? ever heard of this??

    Just to clear something else up, my comment, "go to my happy place" in NO way referred to anything else but guided imagery. I did however intend for it to perhaps get a laugh out of someone, as I see it did. I AM NOT and will never use anything but what has been prescribed to me by my physician. I was simply asking for other's experiences with the COPING PROGRAM to which I referred in my first post. [removed]

    Last edited by HBMod07; 08-18-2006 at 07:31 AM. Reason: If there's a problem with a post please contact the Moderator instead of responding

     
    Old 08-17-2006, 10:25 AM   #11
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    Re: Pain coping program? ever heard of this??

    Gurl,

    The Cleveland Clinic Pain Center is a good facility.I had attended a pain coping clinic there.I was very apprehensive at first.
    It is basically what shoreline stated,They do not take you off your meds,they are giving you other solutions to help you cope with the pain.They do discuss proper diet,supplements,exercise,self hypnosis,they do teach relaxxing techniques.I learned from the experience,but I'm still on meds,the pain meds have not increased,somedays the pain is really bad,I do think some of the coping class experience has helped me get through the bad days.
    I do take time out when the pain is really bad and my 4 children know if I'm laying down with a blanket over my head that I am in my happy place.They have called it that for 7 years.My oldest daughter started that when I had my first surgery and my youngest was only 3(she didn't want her little sister to be upset because I was in pain)
    My personal experience was a good one,I realized that I'll never be painfree,being there I was amongest others that I could relate to.One thing I did find out YOGA wasn't for me.I looked like a knotted pretzel,after having steel rods in the spine,I'm not flexible anymore.
    Gurl,keep posting questions,sometimes people just interpret things out of context. I giggled when I seen [go to your happy place].I get moms in her happy place,she's off in her own little world or if the pharmacy calls hey, mom
    your happy pills are ready.
    I have a very close friend that suffers from chronic pancriutis(sp)I have brain fog today.I know the heck she goes through and she has been hospitalized so much and she has lost alot of weight also.I wish there was more I could do for her.
    Prayers to you
    Toni

     
    Old 08-17-2006, 10:33 AM   #12
    agurl79
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    Re: Pain coping program? ever heard of this??

    Nuffs3,
    Thank you so much for your kind words!!! I know the Cleveland Clinic is a wonderful facility, my grandmother was treated there for some very serious heart problems and did wonderfully!! I myself have never been there, since my health insurance does not go there. I have been at University hospitals in Cleveland and they were wonderful too, but they do not offer that specific coping program my PM doc wants to refer me to. I came on here looking for some information and possibly some encouragement, but unfortunately until now that wasn't what I found. Thank you again!

     
    Old 08-17-2006, 12:48 PM   #13
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    Re: Pain coping program? ever heard of this??

    [Removed]
    he seems to be a decent person and i am sure that he and others, have your best intrests in mind.

    i can certainly understand where at least some of his frustration comes from. it is very disheartening to read some of the other posts on this board as well as others where you here people say things such as; "can you believe my doctor didnt want to up my dosage from 280mg of OC?" or people saying things like; "my doctor refuses to treat my pain... he is only willing to rx 60mg of methadone per day". all of us that have medical professionals that are guineley trying to help us are very lucky. ecspecially when you consider that years ago it was far more difficult than today to get treatments of any kind.

    of course some people develop higher tolerances, and others naturally start out with higher tolerances for medicines and some are in more pain and require higher dosages and/or stronger pain medicines. however it seems that alot of people are relying ONLY on the benifits from narcotic pain meds verses trying to find other solutions to their pain problems.

    dont get me wrong... i am a huge advocate that pain should be treated appropriately and sincerely hope that your issues get resolved and you get better soon.

    best wishes towards a speedy recovery.

    b

    p.s. personally i thought the "happy place" was funny also. it was just the thought of not wanting to try other means, i believe that bothered him.
    i understand this might not have been your intention so dont worry about it. you should always post your concerns and questions.

    Last edited by HBMod07; 08-18-2006 at 07:30 AM. Reason: If there's a problem with a post please contact the Moderator instead of responding

     
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