People not understanding what pain does to you and the hopelesness feeling you have about it is a major frustration. I do try to keep a positive attitude each day because I enjoy staying as active as I can and my mind still has not realized that the body can't do everything that my mind wants it to. My pain doctor is probably doing everything he knows to do. I have a pain pump with Hydromorphone and Fentanyl pumping the drugs into my body 24 hours a day. I can take a up to 4 Hydrocodone in addition a day. I just had my old Spinal Cord Stimulator replace with the newest on the market. I was told that many people that did not get any relief from the old style would get relief from the new one. I was also old that the average patient would get relief by the time they had gone thru 4 or 5 programs on the stimulator. Well with my luck, I have gone thru approximately 18 programs and still can not tell any difference. Each program has 8 stages before you move to the next ptogram, that is 144 stages that I have gone through and still nothing.
I have a major gripe about my Pain doctor, when I see him, I get as high a 4 to 6 minutes time before with him before he leaves. I know that he is busy and he maybe frustrated at not being able to get me any relief (but I doubt it) but I am the one that brings up new meds or procedures to try. If he thinks I will benefit from it he will agree to try it. Considering trying to find another doctor but since he implanted the Pain Pump and both stimulators it will be difficult to find a doctor who wants to take control of my care.
I have considered going to either the Mayo Clinic or there is supposed to be a Hospital that specializes in Neuropathy. I am ready to try anything. If someone can prove to me that eating cow manure will stop the pain, you had better keep a watch on your cows. I really appreciate this Forum in that I do see different treatments or meds mentioned timt to time.
Hi Lady Jane I'm sorry to hear how much pain your in.I have learned that<br>nobody understands or can feel how bad are pain is. I used to think if only<br>my Dr could feel my pain then he would know. So after being in severe<br>chronic pain for years I learned you have to express how much pain your in.<br>If you are like me that's hard to do. You have to do it. You have to<br>communicate the real level of your worst pain. I know that edrenalin and<br>being out with people can distract us from our pain. That makes it hard to<br>feel and say what pain level you are at. They always say what is your pain<br>right now, but you have to think about when you get home and when your in<br>pain. That is the number I would tell otherwise your not going to get<br>enough good appropriate pain relief. I know your not getting 0ain relief<br>because your in pain all the time. You can't act nice. You have to be<br>strong and tell the truth about your real pain so you don't have to be in<br>pain all the time. You have the right to get appropriate good pain relief.<br>You shouldn't be in pain all the time. Tell your Dr tell everyone involved<br>in your care. God bless<br>
@suebreen54 I am starting with my 4th pain mngmnt dr. All have said<br>there is nothing more they can do for me after 5 surgeries ( 2 with<br>rod and screws), spinal needle procedures of all kinds that did not<br>help at all. And over 45 meds that I react badly to or do not work.<br>Every time one goes to these drs one must list your pain level - I<br>list 8 to 9 with some 10 pain. This month I have had 2 periods of 10<br>pain with crying. They know the intensity, but what to do. A visit<br>yesterday - go get another lumbar x-ray to see if there is room to put<br>in a needle for nerve pain relief. How to tell him I have had so many<br>x-rays. So I had x-ray dept call him with why the Feb one isn't one he<br>can look at, but could not get him on phone. I left msg with nurse.<br>Why can't they realize you are having too many x-rays; every 4 months<br>also abdomen and kidney xrays. Yes, they know my pain - I spend most<br>of my time on the bed with burning pain across my derriere from the<br>back sending the periformus nerve signals. I am what they call in<br>looks 15 years younger, but am 86 now. What to live for. I smile for<br>people, so they never see the usual 9 pain. But so many have their own<br>troubles, and drs grow blase (with the e having a french accent mark)<br> @ladyjane85<br>
Hi Lady Jane I'm sorry to hear how much pain your in.I have learned that<br>nobody understands or can feel how bad are pain is. I used to think if only<br>my Dr could feel my pain then he would know. So after being in severe<br>chronic pain for years I learned you have to express how much pain your in.<br>If you are like me that's hard to do. You have to do it. You have to<br>communicate the real level of your worst pain. I know that edrenalin and<br>being out with people can distract us from our pain. That makes it hard to<br>feel and say what pain level you are at. They always say what is your pain<br>right now, but you have to think about when you get home and when your in<br>pain. That is the number I would tell otherwise your not going to get<br>enough good appropriate pain relief. I know your not getting 0ain relief<br>because your in pain all the time. You can't act nice. You have to be<br>strong and tell the truth about your real pain so you don't have to be in<br>pain all the time. You have the right to get appropriate good pain relief.<br>You shouldn't be in pain all the time. Tell your Dr tell everyone involved<br>in your care. God bless<br>
@ladyjane85-God bless you. I get to feeling bad and then I see there is always someone worse off than me. I have a Pain Pump implanted and also a Spinal Cord Stimulator implanted and while I am not getting very good results from either, many people do get relief with the stimulator. Nervo has the latest one out and you never even know it is on, unlike the older style where you felt the vibrations in your body and had to turn it way down or off to lay down.<br><br>I would suggest you ask your doctor about the stimulator. It is not a bad surgery, you will have the stimulator implanted on one side of your back, under the skin, an incision of about 5 to 6 “ but not deep and one incision over your spine to implant the leads. It will be an incision of about 4”. In a couple of days you will be back to normal except for lifting. I have heard of a lot of people getting real pain relief. I just happen to be one of the ones that it does not help yet (still optimistic) and neither does the pump filled Hydromorphone and Fentanyl.<br><br>Good luck!<br><br> <br>
I take 200 mg Tramadol and 900 MG of gabapentin throughout the day. for pinched nerves and arthritis pain. I also take a full aspirin every morning and stil, I cannot walk more than 2 blocks without severe back pain. I am soooo tired. Anybody else who is just fatigued from constant pain?
Constant pain effects us all differently and with the legislature pushing to stop opioids plus the higher cost for medication it becomes a major battle from day to day. I just read of a couple in the South where they could not afford pain medicine for his wife so he killed her then notified family and called the police. They are in their 70's or more. If I was on his jury I could not find him guilty. In the past she had said she wanted to die the article said. Very sad and needless, all for greed. 19lin
dbentley - I had the pain stimulator put in about 3 years ago, one<br>that St Judes uses, true it rumbled my body badly, did no good, and<br>would continue to rumble even after shut off. Had it taken out last<br>year. True there may be a newer model, but I am reluctant to have a<br>6th surgery with 38 staples again. Nothing seems to work for me. hank<br>you - you have an updated one that seems to work better, but one can<br>only withstand so many surgeries.....<br>
dbentley - I had the pain stimulator put in about 3 years ago, one<br>that St Judes uses, true it rumbled my body badly, did no good, and<br>would continue to rumble even after shut off. Had it taken out last<br>year. True there may be a newer model, but I am reluctant to have a<br>6th surgery with 38 staples again. Nothing seems to work for me. hank<br>you - you have an updated one that seems to work better, but one can<br>only withstand so many surgeries.....<br>
Yes that sounds bad all thoughts surgeries. I think because I have a<br>degenerative disease surgery has never been a option for me.<br>So what do you do for your pain? Do you see a specifically a pain Dr.? I<br>do , and his NP specializes in pain also.<br>I think the important think is you have pain relief. You have the right to<br>live without debilitating pain. You should have pain relief. Why did they<br>give you all those surgeries? Are you taking pain medication? There is<br>nothing wrong with taking the right pain medication for your pain. No<br>matter what the medication. Under a pain Drs care you will be fine they<br>won't let anything bad happen.<br>So how is your pain?<br>
dbentley - I had the pain stimulator put in about 3 years ago, one<br>that St Judes uses, true it rumbled my body badly, did no good, and<br>would continue to rumble even after shut off. Had it taken out last<br>year. True there may be a newer model, but I am reluctant to have a<br>6th surgery with 38 staples again. Nothing seems to work for me. hank<br>you - you have an updated one that seems to work better, but one can<br>only withstand so many surgeries.....<br>
I have gotten myself involved in a few organizations through Facebook and I<br>like to just use twitter because I read a lot and its fun. The things I'm<br>doing are for the endangered animals and some for the environment. I do<br>writing and petition signing and sharing on Facebook. Animal abuse is<br>something I've always worked against but with Facebook there are horrible<br>things on there. I like political science so I'm always talking and<br>studying that. The other new thing I'm doing is I live on St Regis River in<br>the Adirondacks. Iv got several apps from Cornell for bird identification,<br>I have a Hugh nest in my try and they have a nest watch and bird feeder<br>watch and mostly I do it from bed or my kitchen window or front French<br>doors. There are bald eagles I see all the time and blue heron. I'm writing<br>without my glasses I hope its not to bad. I am on a new drug that's helping<br>me its for migraine and I had a epidural 2 weeks ago so I'm OK. Traveling<br>is hard for me still . I'm trying to wright this with my cat crossing me<br>one way then the next .well that's it. I'm doing good. Oh I forgot I'm<br>doing meditation apps for pain or to relax and for sleep and I think they<br>are really helping me. Thanks for listening<br>
Hi. I'm Michelle and I've recently had a lumbar spine surgery, which really went very well for my back and took away all the pain. But about three weeks after the surgery I developed nerve pain in the top of my foot and in my big toe . I just begun to take gabapentin but my system doesn't seem to enjoy it. I feel spacey but I can tell it lowers the pain except at night. Just today I tried wrapping A lidocaine patch around the top of my foot and kind of over my big toe. It is really made a difference today, then again I am not sure if it's the gabapentin small dose, or the patch I put on. I have had this chronic pain now for approximately two months perhaps a little longer.
Hi. I'm Michelle and I've recently had a lumbar spine surgery, which really went very well for my back and took away all the pain. But about three weeks after the surgery I developed nerve pain in the top of my foot and in my big toe . I just begun to take gabapentin but my system doesn't seem to enjoy it. I feel spacey but I can tell it lowers the pain except at night. Just today I tried wrapping A lidocaine patch around the top of my foot and kind of over my big toe. It is really made a difference today, then again I am not sure if it's the gabapentin small dose, or the patch I put on. I have had this chronic pain now for approximately two months perhaps a little longer.
Hello Michelle. You mentioned having lumbar surgery. I am about to have surgery, laminectomy, for severe sciatica pain in my legs that I have had for over two years. I have tried everything else so surgery is the next step. I will be 72 this year and am otherwise in good health. I am hopeful that it will help but the closer I get to the date - June 6th - the more I am thinking too much! What was your surgery for exactly.
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People not understanding what pain does to you and the hopelesness feeling you have about it is a major frustration. I do try to keep a positive attitude each day because I enjoy staying as active as I can and my mind still has not realized that the body can't do everything that my mind wants it to. My pain doctor is probably doing everything he knows to do. I have a pain pump with Hydromorphone and Fentanyl pumping the drugs into my body 24 hours a day. I can take a up to 4 Hydrocodone in addition a day. I just had my old Spinal Cord Stimulator replace with the newest on the market. I was told that many people that did not get any relief from the old style would get relief from the new one. I was also old that the average patient would get relief by the time they had gone thru 4 or 5 programs on the stimulator. Well with my luck, I have gone thru approximately 18 programs and still can not tell any difference. Each program has 8 stages before you move to the next ptogram, that is 144 stages that I have gone through and still nothing.
I have a major gripe about my Pain doctor, when I see him, I get as high a 4 to 6 minutes time before with him before he leaves. I know that he is busy and he maybe frustrated at not being able to get me any relief (but I doubt it) but I am the one that brings up new meds or procedures to try. If he thinks I will benefit from it he will agree to try it. Considering trying to find another doctor but since he implanted the Pain Pump and both stimulators it will be difficult to find a doctor who wants to take control of my care.
I have considered going to either the Mayo Clinic or there is supposed to be a Hospital that specializes in Neuropathy. I am ready to try anything. If someone can prove to me that eating cow manure will stop the pain, you had better keep a watch on your cows. I really appreciate this Forum in that I do see different treatments or meds mentioned timt to time.
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2 Reactions@suebreen54 I am starting with my 4th pain mngmnt dr. All have said<br>there is nothing more they can do for me after 5 surgeries ( 2 with<br>rod and screws), spinal needle procedures of all kinds that did not<br>help at all. And over 45 meds that I react badly to or do not work.<br>Every time one goes to these drs one must list your pain level - I<br>list 8 to 9 with some 10 pain. This month I have had 2 periods of 10<br>pain with crying. They know the intensity, but what to do. A visit<br>yesterday - go get another lumbar x-ray to see if there is room to put<br>in a needle for nerve pain relief. How to tell him I have had so many<br>x-rays. So I had x-ray dept call him with why the Feb one isn't one he<br>can look at, but could not get him on phone. I left msg with nurse.<br>Why can't they realize you are having too many x-rays; every 4 months<br>also abdomen and kidney xrays. Yes, they know my pain - I spend most<br>of my time on the bed with burning pain across my derriere from the<br>back sending the periformus nerve signals. I am what they call in<br>looks 15 years younger, but am 86 now. What to live for. I smile for<br>people, so they never see the usual 9 pain. But so many have their own<br>troubles, and drs grow blase (with the e having a french accent mark)<br> @ladyjane85<br>
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1 Reaction@ladyjane85-God bless you. I get to feeling bad and then I see there is always someone worse off than me. I have a Pain Pump implanted and also a Spinal Cord Stimulator implanted and while I am not getting very good results from either, many people do get relief with the stimulator. Nervo has the latest one out and you never even know it is on, unlike the older style where you felt the vibrations in your body and had to turn it way down or off to lay down.<br><br>I would suggest you ask your doctor about the stimulator. It is not a bad surgery, you will have the stimulator implanted on one side of your back, under the skin, an incision of about 5 to 6 “ but not deep and one incision over your spine to implant the leads. It will be an incision of about 4”. In a couple of days you will be back to normal except for lifting. I have heard of a lot of people getting real pain relief. I just happen to be one of the ones that it does not help yet (still optimistic) and neither does the pump filled Hydromorphone and Fentanyl.<br><br>Good luck!<br><br> <br>
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1 ReactionConstant pain effects us all differently and with the legislature pushing to stop opioids plus the higher cost for medication it becomes a major battle from day to day. I just read of a couple in the South where they could not afford pain medicine for his wife so he killed her then notified family and called the police. They are in their 70's or more. If I was on his jury I could not find him guilty. In the past she had said she wanted to die the article said. Very sad and needless, all for greed. 19lin
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1 ReactionWelcome back @suebreen54. We haven't heard from you in a while? How are you?
I also want to tag @briansr @19lin @sharonmay7 and @leh09. Would love to get an update from you all.
dbentley - I had the pain stimulator put in about 3 years ago, one<br>that St Judes uses, true it rumbled my body badly, did no good, and<br>would continue to rumble even after shut off. Had it taken out last<br>year. True there may be a newer model, but I am reluctant to have a<br>6th surgery with 38 staples again. Nothing seems to work for me. hank<br>you - you have an updated one that seems to work better, but one can<br>only withstand so many surgeries.....<br>
Yes that sounds bad all thoughts surgeries. I think because I have a<br>degenerative disease surgery has never been a option for me.<br>So what do you do for your pain? Do you see a specifically a pain Dr.? I<br>do , and his NP specializes in pain also.<br>I think the important think is you have pain relief. You have the right to<br>live without debilitating pain. You should have pain relief. Why did they<br>give you all those surgeries? Are you taking pain medication? There is<br>nothing wrong with taking the right pain medication for your pain. No<br>matter what the medication. Under a pain Drs care you will be fine they<br>won't let anything bad happen.<br>So how is your pain?<br>
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1 ReactionI have gotten myself involved in a few organizations through Facebook and I<br>like to just use twitter because I read a lot and its fun. The things I'm<br>doing are for the endangered animals and some for the environment. I do<br>writing and petition signing and sharing on Facebook. Animal abuse is<br>something I've always worked against but with Facebook there are horrible<br>things on there. I like political science so I'm always talking and<br>studying that. The other new thing I'm doing is I live on St Regis River in<br>the Adirondacks. Iv got several apps from Cornell for bird identification,<br>I have a Hugh nest in my try and they have a nest watch and bird feeder<br>watch and mostly I do it from bed or my kitchen window or front French<br>doors. There are bald eagles I see all the time and blue heron. I'm writing<br>without my glasses I hope its not to bad. I am on a new drug that's helping<br>me its for migraine and I had a epidural 2 weeks ago so I'm OK. Traveling<br>is hard for me still . I'm trying to wright this with my cat crossing me<br>one way then the next .well that's it. I'm doing good. Oh I forgot I'm<br>doing meditation apps for pain or to relax and for sleep and I think they<br>are really helping me. Thanks for listening<br>
Hi. I'm Michelle and I've recently had a lumbar spine surgery, which really went very well for my back and took away all the pain. But about three weeks after the surgery I developed nerve pain in the top of my foot and in my big toe . I just begun to take gabapentin but my system doesn't seem to enjoy it. I feel spacey but I can tell it lowers the pain except at night. Just today I tried wrapping A lidocaine patch around the top of my foot and kind of over my big toe. It is really made a difference today, then again I am not sure if it's the gabapentin small dose, or the patch I put on. I have had this chronic pain now for approximately two months perhaps a little longer.
Hello Michelle. You mentioned having lumbar surgery. I am about to have surgery, laminectomy, for severe sciatica pain in my legs that I have had for over two years. I have tried everything else so surgery is the next step. I will be 72 this year and am otherwise in good health. I am hopeful that it will help but the closer I get to the date - June 6th - the more I am thinking too much! What was your surgery for exactly.