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Feeling down
I am really feeling down and confused. I have tapered down off a ton of medication, as some of you know. I still would like to get off everything and reevaluate my pain but it seems the lower I get on the medication, the worse I feel. I definitely feel some withdrawal when I lower the dose, and my pain hasn't been lower than an 8 in the past month. I find myself weepy, depressed and feeling like there are no answers. I know my pain clinic NP is frustrated with me. Part of it I think is that she definitely had me on way too many meds. Now I get the sense that she wants me to come off everything and then drop me. I feel like it's hopeless. I've been thinking of asking for suboxone, just to get off the oxycodone with no withdrawals and I've also heard it can help with pain. I know I'm depressed from this but when I see "depression" written in my chart, it makes me furious. I think that's what they focus on.
This has been a long road for me, 9 surgeries, countless procedures, every med under the sun, except for methadone, and nothing has helped. It's wearing on me the past week and I feel like I'm not even in the right place to make a decision. I've had one appointment with a pain psychologist and I have several more scheduled. Maybe that will help.
Sorry for the negativity. Just venting. I feel like I am no good to anyone right now. I know a lot of it is from coming down of these narcotics. Right now I'm at 15 mg. (or 20) about every 4 hours. I think the drop was too much initially and I never have been the same for months now.
And thanks for the info on the Savella!! Not sure if that's an option. I just heard about it the other day.
This has been a long road for me, 9 surgeries, countless procedures, every med under the sun, except for methadone, and nothing has helped. It's wearing on me the past week and I feel like I'm not even in the right place to make a decision. I've had one appointment with a pain psychologist and I have several more scheduled. Maybe that will help.
Sorry for the negativity. Just venting. I feel like I am no good to anyone right now. I know a lot of it is from coming down of these narcotics. Right now I'm at 15 mg. (or 20) about every 4 hours. I think the drop was too much initially and I never have been the same for months now.
And thanks for the info on the Savella!! Not sure if that's an option. I just heard about it the other day.
I'm going to hlod you to that "HUG"!! :)
I'm so very proud of you for making the correct decisions. You are doing everything correctly now. As I said, I'm so happy that you have slowed down your taper and are going to stay where you are.
I'm one of the fortunate ones that don't have a Family that "puts me down" because I have to be on Pain Meds to be able to get out of bed and function as a Human Being. They saw me for way too many years not being able to stand up straight or walk very far or be able to do anything without wincing or moaning in pain with every movement that I made. They knew what I was like before the horrific pain began and saw what it did to me when I had nothing to help me at all. I have a very high threshold for pain and the pain that I was in would have put most people in bed and not able to move. I'm so grateful that I have that strong threshold for pain or I might not be able to function well now. I know that your Pain Psychologist will be able to help you learn to set those boundaries!! You're a very strong Lady and will be able (with your Psychologist and our help) to set your Family straight. If you have to back off from some of them for awhile you will be able to do that also!! You must put yourself First for once in your life. You will still be a wonderful Mother and Partner!!! Don't ever concern yourself about that. We're here to remind you of that daily if needed!!! :)
Just hang in there and you are so "right" about everyone here at MH!! There's none better than Tuck and Jaybay!!! :) You've been around here just about as long as I have and know how much support we can get from this website. There's none better!! :) There's one other person that you didn't mention that gives excellent advice on here also and that's mellie4!!!! Don't ever leave yourself out of the equation, girl!! LOL
Sending Much Love and Wonderful Wishes...........Mama Sherry :)
I'm so very proud of you for making the correct decisions. You are doing everything correctly now. As I said, I'm so happy that you have slowed down your taper and are going to stay where you are.
I'm one of the fortunate ones that don't have a Family that "puts me down" because I have to be on Pain Meds to be able to get out of bed and function as a Human Being. They saw me for way too many years not being able to stand up straight or walk very far or be able to do anything without wincing or moaning in pain with every movement that I made. They knew what I was like before the horrific pain began and saw what it did to me when I had nothing to help me at all. I have a very high threshold for pain and the pain that I was in would have put most people in bed and not able to move. I'm so grateful that I have that strong threshold for pain or I might not be able to function well now. I know that your Pain Psychologist will be able to help you learn to set those boundaries!! You're a very strong Lady and will be able (with your Psychologist and our help) to set your Family straight. If you have to back off from some of them for awhile you will be able to do that also!! You must put yourself First for once in your life. You will still be a wonderful Mother and Partner!!! Don't ever concern yourself about that. We're here to remind you of that daily if needed!!! :)
Just hang in there and you are so "right" about everyone here at MH!! There's none better than Tuck and Jaybay!!! :) You've been around here just about as long as I have and know how much support we can get from this website. There's none better!! :) There's one other person that you didn't mention that gives excellent advice on here also and that's mellie4!!!! Don't ever leave yourself out of the equation, girl!! LOL
Sending Much Love and Wonderful Wishes...........Mama Sherry :)
Mama Sherry ... someday soon you and I are going to HUG for real!!!! Michael and I are still looking at Arizona, just need to work out some things here. He's doing really well and he is a great support for me in many ways ... but he's still a guy :) I am hoping the pain psychologist will help me learn how to set boundaries. I tend to give too much information to people that don't want to understand. I set myself up over and over again for getting hurt. I don't ever wish this kind of pain on any of them (well, okay, maybe for an hour just so they'd get a clue :) The support here is where I need to focus ... people that do understand. I did bring a lot of this on myself by tapering too fast and trying to hurry it. I'm okay with the dose I'm at now ... if we can just get it to work. I think the infusion was the right thing and now maybe the oxycodone and ibuprofen can work now that the nerve pain is quieted down.
How are you holding up in the heat??? Mama Sherry, you are one very smart woman. Despite your own pain, you give and encourage and give some more. Tuck, you too, and JayBay. Some people come and go and all of you give so much ... and you give the right advice and the right support. God Bless all of you!!!!
How are you holding up in the heat??? Mama Sherry, you are one very smart woman. Despite your own pain, you give and encourage and give some more. Tuck, you too, and JayBay. Some people come and go and all of you give so much ... and you give the right advice and the right support. God Bless all of you!!!!
Believe me, we won't let you forget that there is hope!! After all, you have us to get you through all of this. LOL
As you know, there's nothing worse than "hard-headed" Family Members that are "know-it-all's" when it comes to OUR CP!! They know nothing about it and have no intention of ever trying to find out anything about it.
You are making all of the right decisions, with the Pain Psychologist, the Physical Therapist and trying to get back to the gym. Way to go, Girl!!! You are taking control once again and you will come through this just fine with all of the support that you do have from Michael and us here at MH!!
Love you, Sweetie..........Mama Sherry
As you know, there's nothing worse than "hard-headed" Family Members that are "know-it-all's" when it comes to OUR CP!! They know nothing about it and have no intention of ever trying to find out anything about it.
You are making all of the right decisions, with the Pain Psychologist, the Physical Therapist and trying to get back to the gym. Way to go, Girl!!! You are taking control once again and you will come through this just fine with all of the support that you do have from Michael and us here at MH!!
Love you, Sweetie..........Mama Sherry
Thanks to all of you. You are all in my prayers as I know we all are battling the same thing. I actually asked for the pain psychologist, and I've also asked for an occupational therapy assessment to see if they can show me different ways of doing things without aggravating my hand. I'm hoping the pain psychologist will help me with a few things ... some nontraditional ways of dealing with the pain, like acupuncture and meditation, and also some help in getting me to ACCEPT things. I have been on a real rollercoaster and I sometimes let my family make me second-guess myself. It's unfortunate that they can't be open-minded and learn about chronic pain but I need to work on boundaries with them. I've offered all kinds of links to things on chronic pain and medication but they just are not interested. I do have Michael, who is very (verbally) supportive. I am finally putting myself first, with my kids, Michael and my family. I am hoping to be able to start to get some form of exercise. I was never a lover of the gym but I used to go regularly and was better in the head for it (as well as the waist!) I've let it go for over a year due to the pain but I think if I can get back and work my way back to what I used to do it will be a big help. I hope all of you are doing okay with your pain. I cannot imagine where I would be without the support from here. I'm hoping this lidocaine infusion will last. They did mention the possibility of doing it weekly for a few weeks to really settle things down. It's been a rough few months with very few days of feeling even mediocre. The relief that came today came within minutes of the infusion. It was really amazing. I was so teary and grateful from it. Last night and early this morning I really felt like there was nothing left for me and today I feel I have hope again.
Love and prayers to all of you!!
XOX
Love and prayers to all of you!!
XOX
Thank heavens you aren't listening to the outside pressure anymore about your Pain Meds!! I've been so worried about you, as you know!!
Unfortunately, there are millions of us that have no choice, IF we want to have a life of any kind, but to take our Pain Meds. You've always done it "as directed" and never done anything wrong. I have to say it again, I'm so happy that you've come to this decision!! I couldn't stand knowing what horrific pain you have brought upon yourself these past few months. Yes, you were on way too much ibuprofen and have damaged your stomach, but know you know that you are on the right track and will be able to get you stomach "problems" under control now!! :)
I'm so glad that you received the lidocaine infusion today and finally have some relief from all of this. Just hang in there and I know that you will find a happy solution to all of this. If you need to change around your meds later then you can do that. Don't hesitate to bring your PCP in on this if necessary. You must get the pain under control and keep it there.
We're here for you, Sweetie!! Don't ever forget that!!!..........Mama Sherry ;)
Unfortunately, there are millions of us that have no choice, IF we want to have a life of any kind, but to take our Pain Meds. You've always done it "as directed" and never done anything wrong. I have to say it again, I'm so happy that you've come to this decision!! I couldn't stand knowing what horrific pain you have brought upon yourself these past few months. Yes, you were on way too much ibuprofen and have damaged your stomach, but know you know that you are on the right track and will be able to get you stomach "problems" under control now!! :)
I'm so glad that you received the lidocaine infusion today and finally have some relief from all of this. Just hang in there and I know that you will find a happy solution to all of this. If you need to change around your meds later then you can do that. Don't hesitate to bring your PCP in on this if necessary. You must get the pain under control and keep it there.
We're here for you, Sweetie!! Don't ever forget that!!!..........Mama Sherry ;)
I see by your mood that you are feeling more hopeful. I am so glad to hear that you are doing better. You are one of us and we all worry about you.... so hang in cause we're here for you.
I agree that you should stop the taper for awhile. Give your body and mind a rest. It may even help with your pain. I am also delighted that the infusion was so successful. Don't demand too much of your body... it hurts and is often tired and has good reason.
I too hate to see the word depression for chronic pain patients. In my opinion most of the time the true diagnosis is "Situational Depression." Would one be depressed if they weren't dealing with daily life changing pain and many nights of interrupted sleep? My best guess would be, no! So don't be too defensive when they suggest you may be experiencing some depression... just add the word, Situational.
Hang in there Millie... you know we are here for you. Sending you Gentle (((Hugs)))... good wishes and warm thoughts.
Your Friend In Pain,
~Tuck
I agree that you should stop the taper for awhile. Give your body and mind a rest. It may even help with your pain. I am also delighted that the infusion was so successful. Don't demand too much of your body... it hurts and is often tired and has good reason.
I too hate to see the word depression for chronic pain patients. In my opinion most of the time the true diagnosis is "Situational Depression." Would one be depressed if they weren't dealing with daily life changing pain and many nights of interrupted sleep? My best guess would be, no! So don't be too defensive when they suggest you may be experiencing some depression... just add the word, Situational.
Hang in there Millie... you know we are here for you. Sending you Gentle (((Hugs)))... good wishes and warm thoughts.
Your Friend In Pain,
~Tuck
I'm so glad to hear you're feeling better! I didn't realize you were trying to taper your meds due to outside pressure. No wonder you felt so badly!
Hopefully your pain psychologist can help you to learn some mental tricks to deal with your pain. Mine has been such a great help to me and not only with pain issues. You know how chronic pain infiltrates every aspect of life and turns it on its ear. Give a few sessions a try before deciding one way or the other. The first is usually kind of a let-down since it's more about the therapist getting a handle on your situation before delving into the meat of the matter.
I still remember how weird and yes, somewhat insulted, I felt before my first shrink appointment. My pain doc didn't insist on therapy but threw it out as an option and gave me a referral. I planned to stew on it a few days befor making an appointment. No sooner did I walk in the door but my phone was ringing. The pain doc had faxed my chart to the pain shrink and the shrink was calling to set up an appointment. No way out. I'd just been bushwhacked and it was probably just as well or I likely would never have done it.
Here's hoping today is just the beginning of things going much better for you. :-)
Hopefully your pain psychologist can help you to learn some mental tricks to deal with your pain. Mine has been such a great help to me and not only with pain issues. You know how chronic pain infiltrates every aspect of life and turns it on its ear. Give a few sessions a try before deciding one way or the other. The first is usually kind of a let-down since it's more about the therapist getting a handle on your situation before delving into the meat of the matter.
I still remember how weird and yes, somewhat insulted, I felt before my first shrink appointment. My pain doc didn't insist on therapy but threw it out as an option and gave me a referral. I planned to stew on it a few days befor making an appointment. No sooner did I walk in the door but my phone was ringing. The pain doc had faxed my chart to the pain shrink and the shrink was calling to set up an appointment. No way out. I'd just been bushwhacked and it was probably just as well or I likely would never have done it.
Here's hoping today is just the beginning of things going much better for you. :-)
Just wanted to give you all an update. My NP called very early this morning and said they would bring me in to give me a lidocaine infusion. I must have sounded very pathetic in my message to her because it usually takes weeks to months to get scheduled for a procedure. I got a lot of relief from it, my pain going from an 8 out of 10 to a 3 out of 10 when I left. I've had this done twice before, once it helped for a couple of weeks and once it had no effect. Since I left the hospital, the pain has gone up a bit but nothing like it was. She has said if necessary they will bring me in for an infusion every week until things quiet down.
For now I have agreed to stay on the same dosage of the oxycodone, and they're adding back in the ibuprofen, but at a lower dose. The doctor that did the infusion thinks I really did a job on my stomach with so many years of high-dose ibuprofen but now that I'm on the Prilosec, I should be okay.
Thanks for all the support ... I don't know where I'd be without it. For now, I'm going to just forget about getting off the medication. I'm hoping my upcoming visits with the pain psychologist will let me come to terms with being on medication for the long term. I have to stop letting people who know nothing about chronic pain influence me on what's best for me. When I take my medication as I'm supposed to, I am a better mother, friend, etc. When I get the way I've been the last few weeks, I'm not any good to anyone.
Prayers for everyone to have a pain free day!!!
For now I have agreed to stay on the same dosage of the oxycodone, and they're adding back in the ibuprofen, but at a lower dose. The doctor that did the infusion thinks I really did a job on my stomach with so many years of high-dose ibuprofen but now that I'm on the Prilosec, I should be okay.
Thanks for all the support ... I don't know where I'd be without it. For now, I'm going to just forget about getting off the medication. I'm hoping my upcoming visits with the pain psychologist will let me come to terms with being on medication for the long term. I have to stop letting people who know nothing about chronic pain influence me on what's best for me. When I take my medication as I'm supposed to, I am a better mother, friend, etc. When I get the way I've been the last few weeks, I'm not any good to anyone.
Prayers for everyone to have a pain free day!!!
You know that we are all behind you 110%!!!
You mean the world to me too..........Mama sherry ;)
You mean the world to me too..........Mama sherry ;)
You guys are the best!!! I have a call in to the pain clinic. I am almost out of my medications. This is the very first time I ever took more than was prescribed and it was by accident. She gave me a new script without telling me she was reducing the dosage and I didn't even look at the bottle as we'd only been on this dosage for a couple of weeks. We had agreed to drop very slowly. But even at that dosage I was feeling the pain increase and slight withdrawals. Over the weekend I realized I didn't have many left so I looked at the bottle and realized she had changed the dose. We weren't planning on changing anything until my appointment on Thursday. Hopefully she'll understand this and write me a script today for at least enough to get me to my appointment with her on Thursday. I've been with her for years. JayBay, she did put me on an antidepressant a little while ago and I started it but I stopped that, along with my ibuprofen and ativan, when I started having a lot of trouble with my stomach. Right now I'm only taking the oxycodone and Prilosec. Hoping to get my stomach okay again. I had asked at my last appointment about getting another stellate ganglion block to ease some of this pain. Usually I have less pain in the summer but that's not the case this year. It has become all-consuming. I am glad I got off the Fentanyl. I don't think it was right for me. But I am getting the sense she is frustrated by my case. I think I am going to ask my primary care to get involved. She is brilliant and even though she doesn't really do pain management I think having her involved will be a good idea. Thanks for the support. And Mama Sherry, you mean the world to me!!! xox
Oh, Sweetie!! I'm so sorry that this isn't getting any better for you!!!! Jaybay, hit it right on the head as usual!! :) You need to take a break for awhile. With everything that you have going on right now, this isn't the time to continue this. You need to let your body and your mind do some recovery.
You're going to be getting your kids ready for school here in a couple more weeks and so many other things on your plate and there's just so much that you can handle at his moment. You've done an incredible job so far and you know that your pain is legitimate and you also know that you will have to be on something, as you've told me, so don't get down on yourself. You can always go back to your tapering when your body has caught up with this huge drop that you've accomplished.
I'm so very proud of what you have done!!! You've managed to do something in a fraction of the time that most people would do it in. Of course, as you said, you did go down "way too fast" but you did it and now you can sit and take a breather for awhile!!
Honey, we're always here for you and we always will be!! You know that you can come on here and vent anytime you want to. We're just so happy that you are letting us help you right now.
I think that you are a Great Mother, Friend, Daughter, etc, and I can't think of anyone that deserves to have a happy and wonderful life more than you do!! I want you to get better and quit "kicking" yourself and to start to "think positive" again like the Kind and Loving Person that you are and that we all Love!!
Like I said before, I'm here, along with everyone else, for you each and every time that you need us. None of us are going anywhere!!
I'll be watching for all of your updates or rants or vents or whatever you want to call them. Just don't every forget that!!
Much Love and MEGA ((((HUGS)))).................Mama Sherry :)
You're going to be getting your kids ready for school here in a couple more weeks and so many other things on your plate and there's just so much that you can handle at his moment. You've done an incredible job so far and you know that your pain is legitimate and you also know that you will have to be on something, as you've told me, so don't get down on yourself. You can always go back to your tapering when your body has caught up with this huge drop that you've accomplished.
I'm so very proud of what you have done!!! You've managed to do something in a fraction of the time that most people would do it in. Of course, as you said, you did go down "way too fast" but you did it and now you can sit and take a breather for awhile!!
Honey, we're always here for you and we always will be!! You know that you can come on here and vent anytime you want to. We're just so happy that you are letting us help you right now.
I think that you are a Great Mother, Friend, Daughter, etc, and I can't think of anyone that deserves to have a happy and wonderful life more than you do!! I want you to get better and quit "kicking" yourself and to start to "think positive" again like the Kind and Loving Person that you are and that we all Love!!
Like I said before, I'm here, along with everyone else, for you each and every time that you need us. None of us are going anywhere!!
I'll be watching for all of your updates or rants or vents or whatever you want to call them. Just don't every forget that!!
Much Love and MEGA ((((HUGS)))).................Mama Sherry :)
Hi, i think you are trying to the right thing and get off all these meds. Try to take it easy on yourself this is a hard job. If you feel like your pain specialist is not supportive go elsewhere. I wouldn't continue with someone who I felt didn't have my best interests at heart. 9 surgeries is huge there is bound to be pain. These meds are all very addictive so just keep on the track you are going and take care of yourself. Good luck
Hey Mellie! Maybe you need to take a break from the tapering and let things calm down and stabilize a bit. You may really need to stay on some form of opiate therapy even though you don't want to mess with it. I know the feeling!
Try not to get angry about the depression note on your chart. It's normal for chronic pain patients unfortunately. You probably don't want to add another medication but have you tried any antidepressants? I wish I'd gone on them a whole lot sooner than I did.
As for Suboxone - don't go there! It's a whole lot stronger than what you're currently taking and a whole lot harder to discontinue. It is completely untrue that Suboxone stops withdrawal symptoms. It's a synthetic, partial-agonist opiate so yes, it causes withdrawal. Suboxone is used for detox of addicts at doses that won't cause euphoria but since it's an opiate, they won't go through withdrawal while they learn some new coping skills and get their emotional houses in order before going off it. Then they go through withdrawal.
The naloxone component of Suboxone also won't allow you to take any breakthrough meds if you need it. Naloxone takes up residence on certain opiate receptors essentially blocking anything else from latching on to them. If you want to try buprenorphine (the active ingredient in Suboxone) for pain management, go with Subutex (pill) or the Butrans patch which don't contain naloxone and will allow you to take breakthrough meds. Of course, if you really want to get off opiates altogether, don't go there! The half-life of buprenorphine is a huge 36 hours. Generally speaking, the longer the half-life, the longer and worse the detox.
Girl, give yourself a break! You're being way to hard on yourself. Detox is hard and it's doubly hard for pain patients. Depression and anxiety go hand-in-hand with detox but it doesn't last forever. Now go do something nice for YOU. Read a good book, take a bubble bath - anything you call a treat. Calgon, take me away! :-)
Try not to get angry about the depression note on your chart. It's normal for chronic pain patients unfortunately. You probably don't want to add another medication but have you tried any antidepressants? I wish I'd gone on them a whole lot sooner than I did.
As for Suboxone - don't go there! It's a whole lot stronger than what you're currently taking and a whole lot harder to discontinue. It is completely untrue that Suboxone stops withdrawal symptoms. It's a synthetic, partial-agonist opiate so yes, it causes withdrawal. Suboxone is used for detox of addicts at doses that won't cause euphoria but since it's an opiate, they won't go through withdrawal while they learn some new coping skills and get their emotional houses in order before going off it. Then they go through withdrawal.
The naloxone component of Suboxone also won't allow you to take any breakthrough meds if you need it. Naloxone takes up residence on certain opiate receptors essentially blocking anything else from latching on to them. If you want to try buprenorphine (the active ingredient in Suboxone) for pain management, go with Subutex (pill) or the Butrans patch which don't contain naloxone and will allow you to take breakthrough meds. Of course, if you really want to get off opiates altogether, don't go there! The half-life of buprenorphine is a huge 36 hours. Generally speaking, the longer the half-life, the longer and worse the detox.
Girl, give yourself a break! You're being way to hard on yourself. Detox is hard and it's doubly hard for pain patients. Depression and anxiety go hand-in-hand with detox but it doesn't last forever. Now go do something nice for YOU. Read a good book, take a bubble bath - anything you call a treat. Calgon, take me away! :-)
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