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assessing pain management
Hi, I just thought I'd get some input and share my situation with the nice people of this forum, and maybe get some possitive feedback and ideas...
Just to summarize a bit: I began with my current pain management doctor about 4 months ago. I had an L5-S1 disectomy and fusion, with instrumentation about 2 years ago.This entire situation really began about 4 years ago, but because my insurance company denied every surgery that was suggested, there were alot of appeals and the like that chewed up atleast another2 years.of flat out suffering ..
Since that Surgery, I have been diagnosed with failed back surgery syndrome. I have a boat load of pain and burning in my low back and it radiates down both legs, just below my knees (base pain), and on really bad days it will radiate down to the heels of my feet. So to claifify, my base pain in chronic, constant, and relentless;.
The two previous pain managemt doctors that I had, gave me multiple courtiszone/steriodal spinal injections which had a miinimal effect if any, and then basicaly blew me off and reffered me to physical therapy as my sole form of pain management..During that time I tried a myriad of prescribed non-narcotic medications..Unfortunately, I seem to be pretty sensitive to those medications, I tend to be among the people that have bad reactions, like nausea, migraine headaches, thoroat closing up, extreme diarrhea, and even other reactions as well.. Trying to do the right thing, I complied to the extent that my insurance company would no longer cover the PT ( 10 months @ 3 times weekly), and frankly speaking they were right, it just was not helping at all, and I had zero medication while doing this which I thought was horrible. All things totaled I endured atleast 8 rounds of courtiszone injections with no relief. I was angry, and frustrated, and stopped all treatment and medication, for almost a year. Almost every 4 months when I could not endure any more I would go to the hospital ER and they would give me a small amount and small dosage of narcotic meds (vikaden, or percocet) for a few days and a shot to bring down swelling whuch did actually provide some relief. This brings me to my current pain management doctor, I just wanted to bring you, the reader up to speed regaring my history..
I have shared all of this with my cuurrent PMD (pain management doctor). and since have had another 2 additional rounds of courtiszone with no benefit. He flat out will not write me any narcodics. Instead we have tried Cymbalta, neurontin, and lyrica. When I had issues with side effects, he stopped them. My last visit (yesterday) I flat out told him that I can not deal with the pain anymore, and need something for relief, even if its temporary. His response was to "maybe" try Neurontin again, and then told me about doing another procedure in a few weeks. He continued on about a nerve burn procedure, that would take 4-8 additional weeks post procedure to fully kick in, and may even cause more pain during that 4-8 weeks interim, and said its a %50 chance that it may reduce my leg pain %40... I would add that the neurontin @ 300 mg 3 times a day gave me a 4 day migraine extreme headache, considering we were building to the target dosage of 3700mg daily, I refused to go through that again, it seems pointless...I'm not happy with his plan. I dont want to scrip sound, but jeeze, where is the relief at?? Im considering seeing another PMD or atleast getting a second opinion, any thoughts here?
Just to summarize a bit: I began with my current pain management doctor about 4 months ago. I had an L5-S1 disectomy and fusion, with instrumentation about 2 years ago.This entire situation really began about 4 years ago, but because my insurance company denied every surgery that was suggested, there were alot of appeals and the like that chewed up atleast another2 years.of flat out suffering ..
Since that Surgery, I have been diagnosed with failed back surgery syndrome. I have a boat load of pain and burning in my low back and it radiates down both legs, just below my knees (base pain), and on really bad days it will radiate down to the heels of my feet. So to claifify, my base pain in chronic, constant, and relentless;.
The two previous pain managemt doctors that I had, gave me multiple courtiszone/steriodal spinal injections which had a miinimal effect if any, and then basicaly blew me off and reffered me to physical therapy as my sole form of pain management..During that time I tried a myriad of prescribed non-narcotic medications..Unfortunately, I seem to be pretty sensitive to those medications, I tend to be among the people that have bad reactions, like nausea, migraine headaches, thoroat closing up, extreme diarrhea, and even other reactions as well.. Trying to do the right thing, I complied to the extent that my insurance company would no longer cover the PT ( 10 months @ 3 times weekly), and frankly speaking they were right, it just was not helping at all, and I had zero medication while doing this which I thought was horrible. All things totaled I endured atleast 8 rounds of courtiszone injections with no relief. I was angry, and frustrated, and stopped all treatment and medication, for almost a year. Almost every 4 months when I could not endure any more I would go to the hospital ER and they would give me a small amount and small dosage of narcotic meds (vikaden, or percocet) for a few days and a shot to bring down swelling whuch did actually provide some relief. This brings me to my current pain management doctor, I just wanted to bring you, the reader up to speed regaring my history..
I have shared all of this with my cuurrent PMD (pain management doctor). and since have had another 2 additional rounds of courtiszone with no benefit. He flat out will not write me any narcodics. Instead we have tried Cymbalta, neurontin, and lyrica. When I had issues with side effects, he stopped them. My last visit (yesterday) I flat out told him that I can not deal with the pain anymore, and need something for relief, even if its temporary. His response was to "maybe" try Neurontin again, and then told me about doing another procedure in a few weeks. He continued on about a nerve burn procedure, that would take 4-8 additional weeks post procedure to fully kick in, and may even cause more pain during that 4-8 weeks interim, and said its a %50 chance that it may reduce my leg pain %40... I would add that the neurontin @ 300 mg 3 times a day gave me a 4 day migraine extreme headache, considering we were building to the target dosage of 3700mg daily, I refused to go through that again, it seems pointless...I'm not happy with his plan. I dont want to scrip sound, but jeeze, where is the relief at?? Im considering seeing another PMD or atleast getting a second opinion, any thoughts here?
I am married as well and our marriage has been strained many times over because of my illnesses. My latest illness is gall bladder disease and I am going into surgery next Thursday. Intimacy has not been there for over a month and it has been very hard for my husband. But I am very hopeful our marriage will brighten up once the pain from my gall bladder is gone and after I find a good pain management physician that will prescribe more effective pain medication next year.
You are going to make it through this rough patch. I truly believe that after you make it through the first five years together, you can make it through many more years. For us with chronic pain caused by failed surgeries, car accidents, diseases, cancer, etc. and are married, the words "through sickness and in health" are really put to the test. And as we age, our bodies age as a natural process and things change because of that, but what we must remember is that marriage is more than intimacy, it is also about a lifelong friendship. My husband is also my buddy. :)
As JayBay said, keep moving. Eventually you will wake up to a brighter day. Many of us here started off with uncontrolled intense pain and spent many days in darkness. And now, many of us (including myself after 5 years of trying treatment after treatment) have found hope through pain medication and other modalities such that our pain no longer leaves us in darkness. Don't give up hope. There is light at the end of the tunnel.
Keep in touch.
femmy
You are going to make it through this rough patch. I truly believe that after you make it through the first five years together, you can make it through many more years. For us with chronic pain caused by failed surgeries, car accidents, diseases, cancer, etc. and are married, the words "through sickness and in health" are really put to the test. And as we age, our bodies age as a natural process and things change because of that, but what we must remember is that marriage is more than intimacy, it is also about a lifelong friendship. My husband is also my buddy. :)
As JayBay said, keep moving. Eventually you will wake up to a brighter day. Many of us here started off with uncontrolled intense pain and spent many days in darkness. And now, many of us (including myself after 5 years of trying treatment after treatment) have found hope through pain medication and other modalities such that our pain no longer leaves us in darkness. Don't give up hope. There is light at the end of the tunnel.
Keep in touch.
femmy
Now that just bites, but I do know that therapy can get very expensive. You can also try to look for a licensed counselor that may not be so high-priced. Just be sure it's someone who actually knows something about pain management. Sometimes pain patients on opiate therapy see a counselor and next thing you know they're told they're addicts and stop taking their meds. Not good!
Also check your local hospitals to see if there are any support groups for pain patients. Those are free and you'll learn the same kinds of coping skills and strategies as you would in private therapy. Much of it is learning how to relax and breathe your way through a pain crisis and to distract yourself from the pain during the day.
In the beginning, I had to consciously recognize that I was sitting there waiting for the pain to ease up before doing anything - physical or not. It doesn't matter if it's getting on the computer, reading a book, watching a movie or what have you. You just need something you can bury your mind in so you aren't continually focused on the pain. I also learned how to meditate myself out of a pain crisis. It's a learned skill that you have to practice but it really helps me a great deal when pain meds are useless. There are plenty of books available about meditation so a trip to the library or book store is a place to start.
Don't give up just because the therapy is out of your price range. You can find ways to help yourself if you look for them. Good for you for being so open to the idea too! Many people are so skeptical or afraid they'll be labeled "crazy" to even give therapy a try. Keep on moving!
Also check your local hospitals to see if there are any support groups for pain patients. Those are free and you'll learn the same kinds of coping skills and strategies as you would in private therapy. Much of it is learning how to relax and breathe your way through a pain crisis and to distract yourself from the pain during the day.
In the beginning, I had to consciously recognize that I was sitting there waiting for the pain to ease up before doing anything - physical or not. It doesn't matter if it's getting on the computer, reading a book, watching a movie or what have you. You just need something you can bury your mind in so you aren't continually focused on the pain. I also learned how to meditate myself out of a pain crisis. It's a learned skill that you have to practice but it really helps me a great deal when pain meds are useless. There are plenty of books available about meditation so a trip to the library or book store is a place to start.
Don't give up just because the therapy is out of your price range. You can find ways to help yourself if you look for them. Good for you for being so open to the idea too! Many people are so skeptical or afraid they'll be labeled "crazy" to even give therapy a try. Keep on moving!
After much research, Im sorry to say that a pain psychologist is just not in my budget. The cheapest psychologisy (per session) in my area would be $65 per visit and thats only if I do twice a week...I only have SSDI and no supp or gap insurance.. The next cheapest is $78 weekly, and I just cant afford that kind of coin right now... I suggested maybe I could do 1 a month and was told several times that its too little to really be effective..
I'm not giving up, but still searching..
Who ever coined the phrase: "nothing is easy" is a freak'n genius
I'm not giving up, but still searching..
Who ever coined the phrase: "nothing is easy" is a freak'n genius
Thank you all for your positive and very informative feedback :)
I am married and the very first year of this injury (presurgey) it really strained my marriage to the max. Fortunately, we've been married and together for a long time, well, long enough to endure many tragedies together. Parents passing away, being my mothes primary care takers with hospice as she passed on here here at our house, And our children from previous marriages, becoming teens and little rebels just to name a few things..
I remember that first year, and I was miserable, totally, and one day I snapped (verbally) and undeservedly at my wife, and she just broke down and crumbled; crying and sobbing..And by the time it was done we were both on the floor crying together. I made a point of it in my head to never do that again, and so far so good. We both agreed that if we are both hurting, then we are at our weakest... She's cried after that by witnessing my suffering, but not because I was mean.Failed procedures or medications she lost it, but again not because I was mean or aggresive towards her. With all of that said, along with finding my next PMD, I think its reasonable to find a pain psychologist as well. Its a super idea and I sincerely thank you all for you awesome advice. Peace and love to you all, thank you :)
I am married and the very first year of this injury (presurgey) it really strained my marriage to the max. Fortunately, we've been married and together for a long time, well, long enough to endure many tragedies together. Parents passing away, being my mothes primary care takers with hospice as she passed on here here at our house, And our children from previous marriages, becoming teens and little rebels just to name a few things..
I remember that first year, and I was miserable, totally, and one day I snapped (verbally) and undeservedly at my wife, and she just broke down and crumbled; crying and sobbing..And by the time it was done we were both on the floor crying together. I made a point of it in my head to never do that again, and so far so good. We both agreed that if we are both hurting, then we are at our weakest... She's cried after that by witnessing my suffering, but not because I was mean.Failed procedures or medications she lost it, but again not because I was mean or aggresive towards her. With all of that said, along with finding my next PMD, I think its reasonable to find a pain psychologist as well. Its a super idea and I sincerely thank you all for you awesome advice. Peace and love to you all, thank you :)
Ditto on what JayBay and marycarmel said. I think you need to find a new doctor that is compassionate and willing to listen to your concerns. Can't type much now, computer is acting up. Need to reboot.
femmy
femmy
I agree with JayBay on all she said, and particularly about the tolerance to narcotics. Though it seems you could certainly benefit from them, even if it's for a while to see how you do.
Pain is so underestimated and under treated. It's a real catch-22 for the narcotics. Some people seem to be able to stay at low doses and not change their doses. I've had a lot of side effects from most meds and have tried nearly everything. For me, sometimes a different manufacturer can mean the medication that was okay is now causing some intolerable side effects. I've switched around so much it's ridiculous.
I take Neurontin. Not sure if it helps. I tried Lyrica and gained a ton of weight rapidly (came off when I stopped it.) I also tried Cymbalta and had an adverse affect from it. I'm very sensitive to a lot of meds, even OTC ones.
I've also started with a pain psychologist and it is something that's often overlooked. I'm still in the beginning stages of developing a relationship with him. Not sure if he's right for me, but I am learning things from him. Another thing that may help is an OT referral. I did lots of PT and didn't even need it; my range of motion was always good; it was just pain and weakness that was my problem. I've recently asked for an OT consult and am hoping they will show me ways to use my hands and possibly suggest certain gadgets or devices that I don't know about. Both hands are essentially useless now. My handwriting is barely legible. No real grasp and can't lift more than 2 pounds. Driving is difficult as well.
It can wear you out and it has caused strain in some of my relationships and resentment from me, which is one thing I work with the pain psychologist about.
Definitely try to find a new doctor. I think we should all think about "interviewing" them before we commit to anything. Hard to think of it when we're in pain but sometimes we get stuck with one and they're not the right one for us.
Pain is so underestimated and under treated. It's a real catch-22 for the narcotics. Some people seem to be able to stay at low doses and not change their doses. I've had a lot of side effects from most meds and have tried nearly everything. For me, sometimes a different manufacturer can mean the medication that was okay is now causing some intolerable side effects. I've switched around so much it's ridiculous.
I take Neurontin. Not sure if it helps. I tried Lyrica and gained a ton of weight rapidly (came off when I stopped it.) I also tried Cymbalta and had an adverse affect from it. I'm very sensitive to a lot of meds, even OTC ones.
I've also started with a pain psychologist and it is something that's often overlooked. I'm still in the beginning stages of developing a relationship with him. Not sure if he's right for me, but I am learning things from him. Another thing that may help is an OT referral. I did lots of PT and didn't even need it; my range of motion was always good; it was just pain and weakness that was my problem. I've recently asked for an OT consult and am hoping they will show me ways to use my hands and possibly suggest certain gadgets or devices that I don't know about. Both hands are essentially useless now. My handwriting is barely legible. No real grasp and can't lift more than 2 pounds. Driving is difficult as well.
It can wear you out and it has caused strain in some of my relationships and resentment from me, which is one thing I work with the pain psychologist about.
Definitely try to find a new doctor. I think we should all think about "interviewing" them before we commit to anything. Hard to think of it when we're in pain but sometimes we get stuck with one and they're not the right one for us.
No, I don't think you're being unreasonable. You've already tried every non-narcotic solution available including a serious try at extended physical therapy. Not all pain docs are created equally as you've discovered. Opiate therapy has its pros and cons and many doctors have decided the cons outweigh the pros for both themselves and for their patients.
While the immediate relief from opiates is certainly gratifying, you need to understand that the early relief you feel will not last. Over time, your body builds up a tolerance to the meds and you'll require increased doses to achieve the same level of relief. You will also be physically dependent on the meds meaning that if you suddenly stop taking them, you will go into withdrawal.
Try to remember that the practice is called "pain management" for a reason. It's not about curing your pain. It's about managing it to the point that you have less pain and at least somewhat improving your life. Many people have unrealistic expectations and their doctors don't do much to educate them about realistic goals much less the pros and cons of opiate therapy. It's a conversation worth having.
Another aspect of pain management seems to be sadly overlooked, and that is therapy with a pain psychologist. No, it won't cure your pain but you can learn some skills to help you better cope with it. Chronic pain winds its tentacles into every last area of our lives and can wreck relationships too. Therapy can help you more effectively deal with those issues.
I think you've gone as far as you can with your current doctor. He appears to be a shot jockey and that's about it. It's reasonable for you to find another doctor.
While the immediate relief from opiates is certainly gratifying, you need to understand that the early relief you feel will not last. Over time, your body builds up a tolerance to the meds and you'll require increased doses to achieve the same level of relief. You will also be physically dependent on the meds meaning that if you suddenly stop taking them, you will go into withdrawal.
Try to remember that the practice is called "pain management" for a reason. It's not about curing your pain. It's about managing it to the point that you have less pain and at least somewhat improving your life. Many people have unrealistic expectations and their doctors don't do much to educate them about realistic goals much less the pros and cons of opiate therapy. It's a conversation worth having.
Another aspect of pain management seems to be sadly overlooked, and that is therapy with a pain psychologist. No, it won't cure your pain but you can learn some skills to help you better cope with it. Chronic pain winds its tentacles into every last area of our lives and can wreck relationships too. Therapy can help you more effectively deal with those issues.
I think you've gone as far as you can with your current doctor. He appears to be a shot jockey and that's about it. It's reasonable for you to find another doctor.
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