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  • Nothing is working for me, what do I do now?

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    Old 01-02-2008, 02:20 PM   #1
    zach88
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    Nothing is working for me, what do I do now?

    Hey,

    First of all, happy new year to everyone. I hope this year brings relief to everyone who needs it; we shouldn't be living like this.

    I'm not going to get into my recent emotional issues that have stemmed from my pain, but I am going to express my frustration. I'm taking SO much medication and nothing is working for me. I'm constantly in pain, and I'm just looking for a little bit of relief, even if it was only for a couple of hours. Nothing is working.

    I'm waiting to hear back from my PM doctor, and I'm really hoping he tells me to come in sometime soon so we can change my meds. He has me on 10mg of Methadone four times a day. I really don't like this medication. I'll sleep for eleven hours because I just can't wake up earlier, take the pill, and then have to nap two hours later. I'm constantly in a fog and out of it, my friends are telling me I'm not acting like myself at all and I'll just sit and stare and not even realize it. And worst of all, it's not doing ANYTHING for my pain. I can't feel a thing. I have no idea when it kicks in and when it stops. I simply have no kind of relief from this medication, and I'm at a loss. I know it's a very strong narcotic, but what do I do when something this strong doesn't work? It's taking a huge emotional toll on me.

    I'm also on Lyrica, Soma, and Cymbalta. I don't feel anything. Including the Methadone, I've been on this regiment of medication for about twenty days, so I would figure that by now everything would've kicked in. At times, the Soma does help me loosen up, but it hasn't within the past week or so. I feel like I'm a brick wall that medication just can't penetrate. Does anyone have any suggestions? I really just don't know what to do, and I'm so terrible frustrated.

    Sorry if my question wasn't clear here, I really just need to vent. I've found that no matter how close I am to a family member or friend, they just can't understand what I'm going through, and it seems to me that obviously you guys can relate, so I'm venting to you. Thanks so much for listening, and feel better!

    Thanks a lot,

    Zach

    Last edited by zach88; 01-02-2008 at 02:22 PM. Reason: Addition to a thought

     
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    Old 01-02-2008, 02:59 PM   #2
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    Re: Nothing is working for me, what do I do now?

    Zach,
    I think that I remember you saying that you were once on Oxycontin or Percocet and that it worked a little. Maybe you should try that at a higher dose to see if it helps. If not there are other meds like Opana (oxymorphone) or Dilaudid (hydromorphone), or even MS Contin. I would try each one individually and hopefully one has to do to trick. Is there a reason that you have such a high tolerance to narcotic medications? I can feel your frustration since all of my gallbladder tests have come back normal and I am still experiencing pain. It gets so frustrating. I hope and pray you find something that helps.

    Brian

     
    Old 01-02-2008, 04:54 PM   #3
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    Re: Nothing is working for me, what do I do now?

    Hi Zach - I feel your frustration Buddy! You have said that you don't feel your meds "kick in" anymore. Maybe you are equating a slight euphoric or relaxed sensation as an indication that your meds have kicked in as you say. But in actuality that "feeling" or slight "buzz" is not pain relief, just your brains initial reaction to the narcotic. Methadone is not going to give you anything like that - I just stopped using Opana ER (oxymorphone) and started back on Methadone (40 mgs. 3 times daily - total 120 mgs.) and I have absolutely no sense of when the med kicks in....I just know that my pain is 100% better today than it was 3 days ago when I started the methadone. I can still take oxycodone for breakthrough pain. When I took oxycodone 3 days ago I have to admit that I could feel it "kick in" with a brief period of a sense of well-being. Now that I'm on the methadone I don't and won't have that feeling. The methadone blocks certian receptors in our brains from feeling the so called "high" from certain narcotics. Keep in mind that it doesn't block the pain relief we can get from other narcotics like oxycodone or dilaudid or oxymorphone.....but the chances of us feeling those breakthrough meds "kick in" while on methadone are very, very slim. At least that has been my experience with the drug. Does this make any sense to you? Memere (K'Mac)

     
    Old 01-02-2008, 05:25 PM   #4
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    Re: Nothing is working for me, what do I do now?

    Dear Zach,

    Both Brian and Memere (K'mac) offer excellent perspectives.

    I have never used Methadone, but from what I've read on this board--your dose seems to be low. Your doctor might have to titrate your dosage upward over the next few months or so. The process is a slow one--again, based on what I've read here.

    There are other combinations of medications that your physician has at his disposal--so take it to heart that you will find some relief in the near future. Many folks here on the board have indicated (and I agree with them) that a 50% reduction in pain is the practical goal. While we can always hope for better results, many of us will always have a pain problem that demands medical attention in order for us to function!

    Brian, I'm sorry that your pain difficulties aren't "showing up"! That can IRK a person. Also, I'm sure I'm not the only who appreciates your posts due to the fact that they offer great information and alternatives.

    Memere (K'Mac!), your comment on the "feeling" or "buzz" is important. When we start opiates--in particular--we often "feel" that euphoric effect and mistake it for pain relief. Eventually, that cheery feeling goes away. But, the pain relief is usually still reasonably active.

    Zach, you can vent any time! Just remember that the rest of us get to vent, too!!

    Sincerely,
    Jon (Conductor)

     
    Old 01-02-2008, 05:54 PM   #5
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    Re: Nothing is working for me, what do I do now?

    Zach, I know all too well where you are comming from. There have been many times when it's like why bother taking these stupid meds they aren't doing anything for the pain anyway. Then maybe it's intentional or not but I've skipped a dose. Then it becomes real obvious that they are working. It's almost like I'm so used to the pain and the meds work so slowly that it doesn't register in my brain that they are working a little.
    Don't get me wrong, I'm not suggesting that you skip your meds.
    Good luck and may we all have a better '08.
    Fred

     
    Old 01-03-2008, 09:20 AM   #6
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    Re: Nothing is working for me, what do I do now?

    Zach,

    As Conductor writes, your methadone dose seems low. How are you on the pain scale (0-10 with zero being no pain and 10 being worst imaginable)? My doc and I always shoot for at least a 5. If I go over that we look for causes and solutions. If you are over a 5 tell your doc. He might be willing to raise your methadone dose.

    About the lethargy - I've been very successful with Dexedrine or Provigil. These are both central nervous system stimulants. When I first went on around-the-clock opioids my doc automatically prescribed dexedrine to handle the sleepiness. It was especially helpful with methadone as it is probably the worst pain med for that.

    Best of Luck!

    steve

    Last edited by forginon; 01-03-2008 at 09:20 AM.

     
    Old 01-04-2008, 06:36 AM   #7
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    Re: Nothing is working for me, what do I do now?

    Hello Zach,

    So sorry to hear of the pain your experiencing.

    I myself have a LOW tolerance to pain and a HIGH level of tolerance to the meds. I think that is because I have been taking them for so long. Not to mention I abused Speed for many years. I am in recovery now and I live a sober life and do not abuse the meds. Hate the little suckers.

    At one time after my last arm surgery in March of 2007, no meds were helping and I was put on the Methadone. It really helped my pain but I just could not tolerate the side effects.

    I tapered off and found that my arm and nerve pain were well enough that I no longer needed the meds.

    Unfortunatly I am on painmeds again because of a neck injury that I will be having surgery for on the 8th.

    For some reason I have been having a very elevated pain level for the last few weeks. I am not sure why that is but like you I just could use a few hours of a lower level. I never expect the meds to take it completly away but a 5 on the 1-10 scale would be good even a 7 at this point.

    So your not alone here!!! It really does start to wear you down when the pain is at an 8 or above for a lenghtly peroid of time. I am righ there with you.

    I think that if you are having a hard time tolerating the side effects and you are not willing to continue with the Methadone, then I would get in to see your doc and discuss the other options.

    It seems that every doc has his/her favorite meds to prescribe. There are many other things out there as others have said already.

    Fentanyl is another stronger med, and why not go back to what you were on if it seemed to be helping more than what you are on now.

    I know that when my pain levels are that high on the scale between an 8-10 on a daily basis, I am really struggling to make it through the day. I don't sleep as meuch or as sound and I go to bed late and up early. It is a viscious cycle.

    My docotor suggested for me to get this book called how to manage your pain before it manages you. It is interesting because the because has you fill out a pain diary that asks you not only to rate your physical pain but to rate the emotional pain as weel. After doing this for a few weeks I could see how the emotional stuff starts to effect the phsical stuff.

    When my levels are that high I get really tensed and have more anxiety. I even catch myself holding my breath because it hurts to breath sometimes and I have to force deeper breaths.

    Zach sorry so long...

    Please hon you really gotta try to find a way to refocus your thoughts. Try some relaxation stuff and get with your doc because no one should suffer like that. You will need to work with the doc to find what med work the best for your body.

    Do you have pets?? I know that when I am ready to vomitt or cry or I am just crippled over by the pain that if I get wiht my cats and just concentrate on the feeling of their fur on my hands and skin that I can sometimes get relaxed enough to rest.

    This is all great stuff I know but not easy...I shoul listen to what I am saying to you...lol I am right there with you bud!!

    Please hang in there...

    In Spirit...Chrissy

     
    Old 01-04-2008, 12:54 PM   #8
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    Re: Nothing is working for me, what do I do now?

    Hi Zach,
    Just to brief a bit--I have been down the same road and have had no answers as to why I have pain. I've been trying everything. The meds help then I get used to one and have to switch. Anyway, depending on where the pain is, I have found that a good massage therapist and chiro help tremendously. I go three x a week and feel fairly good. Try this route, it may help. At least until I get to the root of the pain, I'll find relieve this way.

    Hope you feel better,

     
    Old 01-04-2008, 01:01 PM   #9
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    Re: Nothing is working for me, what do I do now?

    Oh hi everyone--

    This is for anyone out there that can help me understand if this is normal or not. If anyone has experienced this please let me know. Ok here it goes. I have a hiatal hernia and GERD, so I have tried different pain meds to help my dibilitating back and neck aches and pains and what happens is that I end up with the sensation that my throat glands are swollen and I get like atight feeling by the glands. So--docs look at me like I have three heads and tell me it could be the GERD. Well when I take valium, percocet, or piroxicam(feldene) I don't experience that problem. But I took wellbuterin, ultracet and cymbalta and I got that sensation. Anyone get that?

    Thanks ,
    Zandy

     
    Old 01-05-2008, 07:11 PM   #10
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    Re: Nothing is working for me, what do I do now?

    Hey Zach, Obviously that combo of meds isn't right for you, It's just a matter of how long are you going to put up with it.

    However it may be hard to convince a doc that meth gave you absolutely no relief but it makes you sleep all the time. If you were not getting relief, you wouldn't be sleeping. There is nothng wrong with reporting an intolerable side effect for what it is. Your describing someone who's over medicated or on a really bad combo, You wouldn't be zoned or sleeping if you were writhing in pain, ya know?

    As far as expecting to feel something other than lack of pain or some relief, you heading down a very slippery slope. I don't think your tolerance is what you think it is or 40 mgs wouldn't be squat, It was a huge leap from Vicodin or Ultram and Few PM docs would totally disregard the standard who's latter in anlegesia. Meth is a third tier drug for when all else fails. The misunderstanding about it's potency is why methadone deaths are on the rise. Docs assume it can't be abused and abusers assume they aren't being effected by effects like respiritory supression because they don't feel wasted or high.

    Kinda makes you wonder how many times you stop breathing during 14 hours of sleep. Maybe I'm just jealous of the ability to escape by sleeping. I do think you need to think long term and if you think your tolerance is high now, where will it be in 10 years? If the meds impair you more than your injuries, and sleeping that much is impaired, it's hard to find the benefit in the treatment plan.

    There has to be a better way and you need to be careful. Imediate relief doesn't last long and not feeling a med kick in doesn't mean it's not working. I don't feel the pump at all, It's continous. I would be climbing the walls without it and certainly feel it if it ran out. I don't even feel the change in the setting, but I do feel BT meds and I don't drive, I only take them if I need them but using them only for BT has alowed me to use the same dose for 4 years.

    I have days where it doesn't touch the pain and days that I'm able to distract myself from the pain. Doing this is distracting, working is distracting. Sitting at home , miserable with nothing to do, makes it hard not to just want to escape. You may think you have tried everything, but trust me, there are dozens of non opiate methods, psychology, PT, non traditional methods that if they offfer the slightest chance to help, you should be saiying sign me up.

    What would spending an hour a day at a pool do that could possibly harm you, other than disrupt the nap schedule? If it could, might or absolutely would help you, you have to do that. Nobody is going to bring a pool to your house and ask if you want to spend some time doing water earobics. You have to make yourself do whatever it takes to prevent loosing any more strength,mucscle mass, particluarly core muslces if your going to live with a wrecked back. Find something you can do that you will see the benefit from and actually feel the benfit from knowing your doing something to improve your situation. Anything other than sleeping and waiting for someone to come fix you with the right dose or right med.

    Good luck, Dave

     
    Old 01-06-2008, 04:10 PM   #11
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    Re: Nothing is working for me, what do I do now?

    Dear Dave (Shoreline),

    I am probably the guiltiest of everyone here concerning the point you made at the end of your post. It is so easy for me to waste time away between medication doses by sleeping, when I am certainly capable of exercising activities that will assist and improve my condition. I tend to want my medications to do all of the magic when I need to realize--yet again--that I have to put a great deal of effort into working toward feeling better. The more I do during the day will help me sleep better at night, too.

    Thanks for pointing this out.

    Sincerely,
    Jon (Conductor)

     
    Old 01-07-2008, 05:19 AM   #12
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    Re: Nothing is working for me, what do I do now?

    Thanks to everyone for their responses, they really are all so helpful and comforting.

    I just want to say first that I have my parents, friends, relatives; a whole support team trying to get me through this, including my doctors. But at the end of the day, they can't relate to my exact situation. It's become much more than just a physical issue.

    I really liked the discussion of a "buzz," here. I think i remember reading in one of the first posts i read when i found this board some discussion about why a buzz and euphoria is technically a legitimate side effect when it comes to pain relief. I don't know if i'm wording this right at all, but as i recall, someone had said that if you take a medication, and it buzzes you to the point of euphoria, inevitably you will feel better. I found this really interesting.

    When i said that i didn't feel the medication kick in, all i meant was that i felt no pain relief. I haven't felt a "buzz," or any kind of euphoria from any of my painkillers since the summer. At this point, it's all about pain relief for me. I just want to be able to go through a day, and feel motivated enough to push myself to the gym so i can walk in the pool, or do anything else that i would've happily done a year ago.

    It's very frustrating when you're in so much pain and seem to react to very little. I'm beginning to realize the catch 22 that exists for chronic pain patients. Your pain seems to increase as time passes, because not only do you become fed up with the pain physically, but it becomes mentally exhausting as well. which adds an entire new level to the situation. And as you try to relieve your pain with different medications, your tolerances grows, and you begin to find little to no relief from even the strongest narcotics, like methadone.

    This is all from my experience, obviously. I am not even twenty, and i'm approaching a missed second semester of my sophomore year in college. I've only been dealing with these back problems for about eleven months, so i definitely cannot relate to those of you that have experienced pain for YEARS.

    Forgive me if my thoughts are scattered.

    I know I'm young, but I just want my normal life back. Or at least back in a manageable way. It seems like for you guys that have been dealing with chronic pain for years, like dave, that it eventually just becomes something you accept and move on with. I think that's absolutely remarkable, and i commend any and all of you that have reached that point. A year ago, I was laid back and easy going. I talked out all of my problems and tried not to let anything bother me. And when something did, i worked it out. It was very easy for me. I never expected a year later to be experiencing random "panic attacks," or whatever you want to call them, throughout the days.

    Anyway, just more venting. It's nice to talk to people who can relate to me. I know i keep saying it, but it really is a novelty, as i'm sure it is for all of us. My current medication, methadone, does make me very sleepy, so it is obviously affecting me to some extent. However, the analgesia it provides for me is non-existent.

    My doctors are really, really great, and i realize now how fortunate i am to have doctors who really care about me, and who will return my calls promptly and assure me everything will be ok. My surgeon is making me an appointment with a neurosurgeon today, because no neurosurgeon in my area would see me because i am already a post-op patient. He really is going out of his way, as is my PM dr, who is seeing me earlier than intended on wednesday. I really am looking forward to this week being one of progress.

    I know what I need to do in the end to get myself better, and i certainly know i cannot rely on pain medications, especially with my tolerance being so high. I guess I just need to get to the point where i become physically comfortable, and psychologically relaxed enough to move on. I am very optimistic about this happening soon.

    Thanks again for everyone's advice. Chrissy, I wish you the best of luck on your surgery tomorrow, I'm sure everything will go great. And to everyone else, please feel better soon.

    Zach

     
    Old 01-07-2008, 05:52 AM   #13
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    Re: Nothing is working for me, what do I do now?

    Hello Zach,

    Thanks for the good thoughts for my surgery tomorrow.

    I am right there with you when you talk about tolerance and how after having pain that can be termed Chronic, it does start to take its tol mentally and emptionally.

    Like you I am a student in college. I am much older than you but I am sure that it is just as chaalenging to try and focus on studies when you have all the pain issues. You said you even had to take a break from your classes.

    I have reduced my upcoming semester down to 1 class. I also would have been applying to the nursing program this spring but because of the neck I put it off for another year so I can relate.

    Zach at some point I had to take little pieces of my life back and that is not easy to do sometimes. Little steps at a time my friend.

    As for acceptance!!! Well to be honest sometimes I have it and sometimes I just dont.
    I can tell you from my own personal experience that when I am upset at my siuation and my pain and I am not having a whole lot of acceptance that things are the way they are right now....My pain is elevated and I become restles and irritable.
    If I do not deal with my attitude I can send myself into a downward spiral. Mentally and emptionally which then effects the pain.
    It is a viscous little cycle.
    Now I am not a religious gooroo and do not attend church very often, but....
    I am what I would like to consider a spiritual person. This takes work and practice but if I am spiritauly doing well then I am able to match clamity with serenity.
    In other words I can find peace inside of myself during the storms of life.

    Yeah right!!! LOL Easier said than done. I just keep practicing and I get better as time passes.

    Hang in there Zach. Sending you out a HUG form cyber space....

    Chrissy

     
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