Aa
Any advice for getting off these meds?
I want to destroy even the idea of opiates. I know that it is unrealistic. If there had not been any such drugs I have no idea how I would have survived 3 different surgeries, one involving the removal of a BODY ORGAN. I was dying, there wasn't a choice. But, being on opiates for 18 months for 4 herniated discs in my spine was a ridiculous idea. Why didn't the doc tell me the possibility that getting off this **** would be more unpleasant than living in chronic pain? He didn't even make the decision. I said to him myself that the pain is better than the f-ing side effects of this stuff. Sometimes that is not the case, as when my cousin was dying of cancer. He needed the meds more than anything else. It would have been horribly in humane not to drug the living hell out of him IMO. But me? I've been tapering for 8 months! Off the morphine, off the dilaudid, now on about 10mg of Percocet/day. I just want to stop and go to zero but that is not an option for me. I also have multiple sclerosis. I NEED to be on an immuno-modifier. If I go underweight, I am pulled off my treatment. Meaning, I'm already feeling like hell and am so sick of this ridiculously drawn out process, but if I can't eat or sleep for 5-7 days, I risk getting pulled off my MS meds, which is not anywhere close to a viable option. I don't want to die, and don't feel depressed or suicidal over this withdrawal. I feel ANGRY and vaguely HOMICIDAL towards others.
Ok, let me clarify, I am NOT going to kill anyone, and am not feeling angry towards family, friends, my boyfriend, etc. I'm feeling angry at the pain management doctor who did the injections that actually stopped about 75% of the pain anyway, well, the pain that is related to my many disc issues, not pain from MS, but it's not like opiates really touch nerve pain anyway. Gabapentin is my saving grace for that! 6 corticosteroid injections and 3 long lasting epidural injections later, over 18 months, and I told him get me off these pills! So he's been trying, I'll give him that. But the strange thing is that he never even asked if the pain level was going down. He just kept writing scripts, which I never abused. Had about 90 pills left over (extra) when I asked him to take me off of the medication. I took less than prescribed as the pain lessened, never took more than prescribed. BUT, I am STILL physically dependent on this stuff. I go 6 hours without a dose? Restless leg syndrome? Try restless EVERYTHING syndrome. I have to constantly be moving. Considering my balance issues, and the patches in my legs that go numb on and off all damn day from the MS, needing to be moving constantly is highly irritating. I get nauseated to the point that I cannot eat until after the next dose as well. Cannot sleep, etc. It's maddening. I am SO tempted to just stop taking ANYTHING and jump off. However, I am a whopping 8 pounds into a normal weight range. If I lose any more than that, my MS treatment stops for fear of emaciating. My father's sister died of MS 6 and 1/2 years ago. I am SO not trying to go out that way, at least not any time in the foreseeable future. Immunomodifiers however, are known to cause appetite suppression, and weight loss. So it's a back and forth. You cannot lose too much weight with MS because you run the risk of never getting it back on. My aunt was skin and bones by the time she passed from complications of MS, but at least she'd put up one hell of a fight. She was no longer being medicated because her treatments simply stopped working. Not her fault. Mine are working, so why run the risk of coming off them? I have lost 35 pounds since I was diagnosed already. BUT stop the immuno meds, and let the 15 lesions spread throughout my brain and spine start eating things that I need to stay alive out of my nervous system at a MUCH faster rate all over again? No thank you. Gotta stay in a normal weight range at all costs. The risk of just dropping to zero is too great. My neurologist agrees, although she hates the idea of keeping me on opiates forever too. Catch 22, no win. Bullsh*t. Um..... help?
Ok, let me clarify, I am NOT going to kill anyone, and am not feeling angry towards family, friends, my boyfriend, etc. I'm feeling angry at the pain management doctor who did the injections that actually stopped about 75% of the pain anyway, well, the pain that is related to my many disc issues, not pain from MS, but it's not like opiates really touch nerve pain anyway. Gabapentin is my saving grace for that! 6 corticosteroid injections and 3 long lasting epidural injections later, over 18 months, and I told him get me off these pills! So he's been trying, I'll give him that. But the strange thing is that he never even asked if the pain level was going down. He just kept writing scripts, which I never abused. Had about 90 pills left over (extra) when I asked him to take me off of the medication. I took less than prescribed as the pain lessened, never took more than prescribed. BUT, I am STILL physically dependent on this stuff. I go 6 hours without a dose? Restless leg syndrome? Try restless EVERYTHING syndrome. I have to constantly be moving. Considering my balance issues, and the patches in my legs that go numb on and off all damn day from the MS, needing to be moving constantly is highly irritating. I get nauseated to the point that I cannot eat until after the next dose as well. Cannot sleep, etc. It's maddening. I am SO tempted to just stop taking ANYTHING and jump off. However, I am a whopping 8 pounds into a normal weight range. If I lose any more than that, my MS treatment stops for fear of emaciating. My father's sister died of MS 6 and 1/2 years ago. I am SO not trying to go out that way, at least not any time in the foreseeable future. Immunomodifiers however, are known to cause appetite suppression, and weight loss. So it's a back and forth. You cannot lose too much weight with MS because you run the risk of never getting it back on. My aunt was skin and bones by the time she passed from complications of MS, but at least she'd put up one hell of a fight. She was no longer being medicated because her treatments simply stopped working. Not her fault. Mine are working, so why run the risk of coming off them? I have lost 35 pounds since I was diagnosed already. BUT stop the immuno meds, and let the 15 lesions spread throughout my brain and spine start eating things that I need to stay alive out of my nervous system at a MUCH faster rate all over again? No thank you. Gotta stay in a normal weight range at all costs. The risk of just dropping to zero is too great. My neurologist agrees, although she hates the idea of keeping me on opiates forever too. Catch 22, no win. Bullsh*t. Um..... help?
Sorry you are having such a hard time, but I don't understand why your pain management doctor hasn't tried something other than opiates. No two people are the same, and that is reflected in medicine. The dosages you mention don't sound excessive, I don't know how bad MS pain is, I have O.A, so I have no idea what it's like.
My cousin has MS, with her she has a lot of breathing issues and for her the pain isn't too bad right now! She is aware that can change in a heartbeat, it was years before she was finally diagnosed. She had several MS test and some would come back inconclusive or negative. So it ended up being years of test until they eliminated everything else and that was left. It was really last year after struggling with the illness for close to fourteen years the test came back positive. For several years she was being treated for a rare blood disease that hits older African American men, she was a 30 year old white female with no history of MS in the family or rare blood disease that we knew of, lol!
Before being sent to pain management every time I get a cortisone shot I would be able to stop taking the pain killers, for two or three weeks. The first few worked really good, six weeks of NO groin pain, it was wonderful. NO pain killers, still had to take the muscle relaxers and of course my anti-inflammatory. Those first two shots, wow, it was almost like being normal again! Except I could only have four a year, and each year it was less effective and then I would be down to one shot a year. Anyway, during those 4 times a year I would stop taking the pain killers, didn't need them, and after three or four days of feeling flu like symptoms all would be well. For me, I was never sick to my stomach or vomiting, just achy all over. Since my hip wasn't hurting I could feel my back, but it wasn't enough to take the pain killers my doctor prescribed. Taking the anti-inflammatory and muscle relaxers seemed to do the trick as long as I didn't do something that would cause it to go out.
Like I said before everyone is different, but the physical withdrawl shouldn't last more than several days. Let's see if I can remember what my pain management doctor told me when I was hesitant about going on the fentanyl patches. You didn't mention any family history of addiction, so I am assuming there is none. Anyway, when a person is in chronic pain, their body adjust to the pain, so that it thinks this is normal. One way it adjust by brain chemistry and you should ask your pain management doctor he will tell you about those changes and what chemicals it changes and those chemicals can really change your body and the perception of pain along with nerve endings and how they think the constant pain is now normal.
Those nerves tend to think that the brain isn't getting the message so they keep sending pain indicators. Even when there is no reason to send those pain messages, so even when there isn't direct stimulation of pain those darn nerves keep sending the brain the message, because the brain chemistry is different now, this what my pain management doctor calls the cycle of pain, there is three parts, but those are the only two I can think of, that's why you need to talk to your pain management. Also a person with chronic pain, uses the pain killer differently than someone that isn't in pain, we don't feel anything but pain relief. There isn't any pleasure derived, just pain relief so our brains aren't going, WOW that was nice feeling or l want to try that again. Our brain is WOAH, what happen to that pain message I should be receiving, and after breaking that cycle of pain, the brain chemistry with the help with anti-depressants that all those chemicals that flooded are back to normal or pretty darn close.
So those with the help of the opiates those nerves no longer have to send that message over and over again because the brain isn't flooded with those chemicals trying to compensate. So, for me, when it's time to change my patch every 72 hours, my brain is telling the nerves, ya, I know I got the message. So we don't become addicted our bodies become more tolerant and needs a higher dosage to keep the pain at bay. Now, for me, once I get my hips done, I won't need the pain killers because the reason for my pain will be gone.
I am sorry that you don't have that option, and that it's why you have a doctor that listens to you and takes the time to address your problems! Now, if they just hand you a prescription and don't talk to you or explain things like that, honestly you aren't getting the best care and how can you make the right decisions if your doctor isn't explaining things to you. It may not be you, it just might be them. Now, I don't know about MS or what state you live in and I don't know if there are many pain management centers in the state/area you live in. So please don't just drop the doctor and then you are stuck even more miserable than you are now. Make him spend time with you and explain why your body keeps feeling pain or why you are so sick taking the opiates.
If it's not a physical but a mental thing then seeing someone to help you cope and understand chronic pain and how to deal with your disease might be an answer. After my accident, the doctors told me you are gonna have to learn to live with the pain. Nothing else can be done, so learn to deal with it. Back in the early 90's, the pain management that I was referred to was a psychologist. To be honest I was offended and pissed off, I felt like I was told your pain isn't real it's all in your head. Regardless of having to relearn how to walk, at 25 I felt my whole life imploded and I was sent out the door without any idea how to cope with the changes in my life.
Eventually I did end up seeing someone, and I learned how to cope with my new reality. I learned how to breath and slowly relax, and I still use it, especially on those day no matter what I do, the pain is still there! I also learned self-hypnosis, for me imaging ice on my back and hearing the sizzle of the ice melting and with that melting my pain slowly away. For me that is what worked, I did that until the hips starting going bad. Eventually I had to start taking pain killers because I was so tired from lack of sleep I couldn't concentrate for the self hypnosis and no matter how hard I tried I couldn't relax my muscles enough. For me I just wanted one good night of sleep, and with the painkillers I did, I was able to feel semi normal, and didn't realize how all consuming the pain became.
I am sorry this became so long, but being in constant pain and taking medicine that makes you ill, is frustrating. I can relate because I was 29 when I started having problems my hips. I was told flat out, it's not your hips it's your back. Not a thing wrong with your hips, the MRI that shows O.A, has got to be a mistake because you are too young to have that kind of arthritis. Come to find out, yeah, I did, but there was only two doctors that took the time to listen to me. Apparently, it wasn't caused from the accident, it's a birth defect, so please have faith! I hope that you can get some relief at least with maybe changing the pain killer to something your body can handle without it making you sick. Good Luck, and sometimes, and I know how hard it can be, try to find time to give your self a break. Even if it's just an hour of reading a book, it's exhausting constantly trying to deal with the pain, its overwhelming and it just wears on your body. Good Luck and I hope you can find some relief! Best Wishes!
My cousin has MS, with her she has a lot of breathing issues and for her the pain isn't too bad right now! She is aware that can change in a heartbeat, it was years before she was finally diagnosed. She had several MS test and some would come back inconclusive or negative. So it ended up being years of test until they eliminated everything else and that was left. It was really last year after struggling with the illness for close to fourteen years the test came back positive. For several years she was being treated for a rare blood disease that hits older African American men, she was a 30 year old white female with no history of MS in the family or rare blood disease that we knew of, lol!
Before being sent to pain management every time I get a cortisone shot I would be able to stop taking the pain killers, for two or three weeks. The first few worked really good, six weeks of NO groin pain, it was wonderful. NO pain killers, still had to take the muscle relaxers and of course my anti-inflammatory. Those first two shots, wow, it was almost like being normal again! Except I could only have four a year, and each year it was less effective and then I would be down to one shot a year. Anyway, during those 4 times a year I would stop taking the pain killers, didn't need them, and after three or four days of feeling flu like symptoms all would be well. For me, I was never sick to my stomach or vomiting, just achy all over. Since my hip wasn't hurting I could feel my back, but it wasn't enough to take the pain killers my doctor prescribed. Taking the anti-inflammatory and muscle relaxers seemed to do the trick as long as I didn't do something that would cause it to go out.
Like I said before everyone is different, but the physical withdrawl shouldn't last more than several days. Let's see if I can remember what my pain management doctor told me when I was hesitant about going on the fentanyl patches. You didn't mention any family history of addiction, so I am assuming there is none. Anyway, when a person is in chronic pain, their body adjust to the pain, so that it thinks this is normal. One way it adjust by brain chemistry and you should ask your pain management doctor he will tell you about those changes and what chemicals it changes and those chemicals can really change your body and the perception of pain along with nerve endings and how they think the constant pain is now normal.
Those nerves tend to think that the brain isn't getting the message so they keep sending pain indicators. Even when there is no reason to send those pain messages, so even when there isn't direct stimulation of pain those darn nerves keep sending the brain the message, because the brain chemistry is different now, this what my pain management doctor calls the cycle of pain, there is three parts, but those are the only two I can think of, that's why you need to talk to your pain management. Also a person with chronic pain, uses the pain killer differently than someone that isn't in pain, we don't feel anything but pain relief. There isn't any pleasure derived, just pain relief so our brains aren't going, WOW that was nice feeling or l want to try that again. Our brain is WOAH, what happen to that pain message I should be receiving, and after breaking that cycle of pain, the brain chemistry with the help with anti-depressants that all those chemicals that flooded are back to normal or pretty darn close.
So those with the help of the opiates those nerves no longer have to send that message over and over again because the brain isn't flooded with those chemicals trying to compensate. So, for me, when it's time to change my patch every 72 hours, my brain is telling the nerves, ya, I know I got the message. So we don't become addicted our bodies become more tolerant and needs a higher dosage to keep the pain at bay. Now, for me, once I get my hips done, I won't need the pain killers because the reason for my pain will be gone.
I am sorry that you don't have that option, and that it's why you have a doctor that listens to you and takes the time to address your problems! Now, if they just hand you a prescription and don't talk to you or explain things like that, honestly you aren't getting the best care and how can you make the right decisions if your doctor isn't explaining things to you. It may not be you, it just might be them. Now, I don't know about MS or what state you live in and I don't know if there are many pain management centers in the state/area you live in. So please don't just drop the doctor and then you are stuck even more miserable than you are now. Make him spend time with you and explain why your body keeps feeling pain or why you are so sick taking the opiates.
If it's not a physical but a mental thing then seeing someone to help you cope and understand chronic pain and how to deal with your disease might be an answer. After my accident, the doctors told me you are gonna have to learn to live with the pain. Nothing else can be done, so learn to deal with it. Back in the early 90's, the pain management that I was referred to was a psychologist. To be honest I was offended and pissed off, I felt like I was told your pain isn't real it's all in your head. Regardless of having to relearn how to walk, at 25 I felt my whole life imploded and I was sent out the door without any idea how to cope with the changes in my life.
Eventually I did end up seeing someone, and I learned how to cope with my new reality. I learned how to breath and slowly relax, and I still use it, especially on those day no matter what I do, the pain is still there! I also learned self-hypnosis, for me imaging ice on my back and hearing the sizzle of the ice melting and with that melting my pain slowly away. For me that is what worked, I did that until the hips starting going bad. Eventually I had to start taking pain killers because I was so tired from lack of sleep I couldn't concentrate for the self hypnosis and no matter how hard I tried I couldn't relax my muscles enough. For me I just wanted one good night of sleep, and with the painkillers I did, I was able to feel semi normal, and didn't realize how all consuming the pain became.
I am sorry this became so long, but being in constant pain and taking medicine that makes you ill, is frustrating. I can relate because I was 29 when I started having problems my hips. I was told flat out, it's not your hips it's your back. Not a thing wrong with your hips, the MRI that shows O.A, has got to be a mistake because you are too young to have that kind of arthritis. Come to find out, yeah, I did, but there was only two doctors that took the time to listen to me. Apparently, it wasn't caused from the accident, it's a birth defect, so please have faith! I hope that you can get some relief at least with maybe changing the pain killer to something your body can handle without it making you sick. Good Luck, and sometimes, and I know how hard it can be, try to find time to give your self a break. Even if it's just an hour of reading a book, it's exhausting constantly trying to deal with the pain, its overwhelming and it just wears on your body. Good Luck and I hope you can find some relief! Best Wishes!
Hi There,
I guess i just don't understand, you said you want to get off the meds but you can't because of the pain? Have you spoken with your doctor about maybe a high calorie diet to keep your weight up? I could give you some advice on that if it would help.
I guess i just don't understand, you said you want to get off the meds but you can't because of the pain? Have you spoken with your doctor about maybe a high calorie diet to keep your weight up? I could give you some advice on that if it would help.
Well, I suppose I will be leaving this community. Thank you pain management community, for nothing. Way to completely ignore a desperate woman's cry for help.
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