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Hi, Mike.
I've been following your story since I joined the forum. In fact, yours was the first one I read before I decided to join. I couldn't help but feel your pain. My curve is obviously not as bad as yours by a long shot. It is painful, however. I have periods of relatively little pain and periods of very intense pain. I've also been on very strong meds. At it's worst, I was on fentanyl, percocet, muscle relaxant, and a benzo. I don't want to be a drug addict, so I completely understand your desire to get rid of these meds. Often, I'm faced with the choice, meds or pain. I go off the meds for awhile or wean down to a lower level and then the pain drives me back onto the meds. It's quite frustrating. I woke up this morning without much pain, so I thought, "Why take a painkiller if I'm not in pain?" So I didn't. I usually have to take percocet just to be able to get out of bed. But this morning was much, much better so I didn't. I've been on this stupid drug for about three years straight now. Some days I would take maybe two pills and other days I'd need five or six pills. On average, I take three or four. I haven't increased my dose or asked my doctor to increase it, even though he tries to get me back on fentanyl when I have bad flare-ups. I've declined the last couple of times and managed through. Well back to this morning. By nine o'clock I was having chest pain and starting to sweat profusely on my arms and legs. I was finding it difficult to breathe comfortably and that "sick" feeling of withdrawal was setting in pretty hard. I waited until 10 o'clock when my benzo and heart medicine were due (I'm also weaning off the benzo) and took a percocet along with my other meds. I don't know if it was lack of narcotic or the fact that I'm weaning off the benzo. It felt like both. So, yes, it's awful to get off these drugs. I've done it too many times to count. I can't justify staying on them to feel normal when my pain is minimal. The key is to do it gradually. It sounds like you are at a point where you still need them. Unfortunately, as I'm sure you know, the longer you are on them, the less they actually help with the pain. It would be nice to have a non-addictive drug that your body wouldn't build a tolerance to. But, unfortunately, they don't. Not one that works on that severe pain anyway.
I guess the reason I'm writing this to you is because it sounds like you are in a LOT of pain. Try not to feel guilty about needing the meds. I feel guilty, too. My doctor said that because I feel that way, he's not as worried that I will become addicted. There's a difference between psychological addiction and chemical dependence. We can't help the fact that our bodies adjust to the meds. We WILL go through a withdrawal period. That doesn't mean we are drug addicts simply by the fact we are willing to go through that in order to get off of the stuff. Wean off of them when you are better after your surgery. It's going to be rough, since you've been on them for so long. But if you reduce them gradually, and it can take a long time, it is much easier. You are also a very large man, so what may seem like a huge dose to some is probably not that much to you. Size matters when it comes to dosing meds. So don't base how you feel about your dose on what you hear other people are taking. You are probably at least twice the size as many of us.
I hope you can get some help through the patient advocacy group. It's frustrating that help is so readily available for kids, but not for adults. Those kids grow up, and once we do, if we didn't have the surgery and find ourselves progressing, we are pretty much stuck in the mud. I've had roadblocks, too. I hope you can get the help you NEED and I wish you all the best!
I've been following your story since I joined the forum. In fact, yours was the first one I read before I decided to join. I couldn't help but feel your pain. My curve is obviously not as bad as yours by a long shot. It is painful, however. I have periods of relatively little pain and periods of very intense pain. I've also been on very strong meds. At it's worst, I was on fentanyl, percocet, muscle relaxant, and a benzo. I don't want to be a drug addict, so I completely understand your desire to get rid of these meds. Often, I'm faced with the choice, meds or pain. I go off the meds for awhile or wean down to a lower level and then the pain drives me back onto the meds. It's quite frustrating. I woke up this morning without much pain, so I thought, "Why take a painkiller if I'm not in pain?" So I didn't. I usually have to take percocet just to be able to get out of bed. But this morning was much, much better so I didn't. I've been on this stupid drug for about three years straight now. Some days I would take maybe two pills and other days I'd need five or six pills. On average, I take three or four. I haven't increased my dose or asked my doctor to increase it, even though he tries to get me back on fentanyl when I have bad flare-ups. I've declined the last couple of times and managed through. Well back to this morning. By nine o'clock I was having chest pain and starting to sweat profusely on my arms and legs. I was finding it difficult to breathe comfortably and that "sick" feeling of withdrawal was setting in pretty hard. I waited until 10 o'clock when my benzo and heart medicine were due (I'm also weaning off the benzo) and took a percocet along with my other meds. I don't know if it was lack of narcotic or the fact that I'm weaning off the benzo. It felt like both. So, yes, it's awful to get off these drugs. I've done it too many times to count. I can't justify staying on them to feel normal when my pain is minimal. The key is to do it gradually. It sounds like you are at a point where you still need them. Unfortunately, as I'm sure you know, the longer you are on them, the less they actually help with the pain. It would be nice to have a non-addictive drug that your body wouldn't build a tolerance to. But, unfortunately, they don't. Not one that works on that severe pain anyway.
I guess the reason I'm writing this to you is because it sounds like you are in a LOT of pain. Try not to feel guilty about needing the meds. I feel guilty, too. My doctor said that because I feel that way, he's not as worried that I will become addicted. There's a difference between psychological addiction and chemical dependence. We can't help the fact that our bodies adjust to the meds. We WILL go through a withdrawal period. That doesn't mean we are drug addicts simply by the fact we are willing to go through that in order to get off of the stuff. Wean off of them when you are better after your surgery. It's going to be rough, since you've been on them for so long. But if you reduce them gradually, and it can take a long time, it is much easier. You are also a very large man, so what may seem like a huge dose to some is probably not that much to you. Size matters when it comes to dosing meds. So don't base how you feel about your dose on what you hear other people are taking. You are probably at least twice the size as many of us.
I hope you can get some help through the patient advocacy group. It's frustrating that help is so readily available for kids, but not for adults. Those kids grow up, and once we do, if we didn't have the surgery and find ourselves progressing, we are pretty much stuck in the mud. I've had roadblocks, too. I hope you can get the help you NEED and I wish you all the best!
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