sharonn
08-08-2007, 11:33 AM
:( I have posted before and also on the Back and Neuropathy Boards....spinal fusion in 1986...current scar tissue, another small herniationL-4/S-1 and neuropathy in legs and feet. The pain has gotten so progressively worse since last year. The MRI findings do not explain this type of pain so I am left with "ideopathic neuropathy"...I take 80-100 mgs of oxycodone a day along with elavil...dc'ed neurontin due to swelling. The neuro told me that the opiates are CAUSING this pain as I am probably feeling withdrawal from them and this is the source of my pain. WTH? I do not want to take anything and believe me, I feel tied down to the entire narcotic regime...hate it and love it at the same time because it enablesme to function. But I feel as if I am to blame here. He said if I tapered off I would actually be in less pain.I have heard this before. My legs hurt all the time and at night it wakes me up. Good grief....isn't it depressing enough to live with pain w/o guilt thrown in? Any opinions would be of great value. My EMG showed "mild sensory neuropathy"...so I am assuming that this can hurt a lot. I have medicaid so seeking another opinion right now is not possible....but I did see all my test results and understand why the Drs. seem baffled with my leg pain...especially left leg sciatica w/o MRI documentation. I asked if scar tissue around the fusion could cause this and he shrugged????? Thanks everyone.I lay in bed at night depressed and hurting...now feeling guilty that I may have brought this on with the oxycodone. Sharonn
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feelbad
08-08-2007, 11:48 AM
do you have the actual copy of that MRI report in your possession?if not,obtain one and see just exactly what it states about the overall findings.some docs,mostly specialists actually do not tell you about everything that is even in your reports,only what they 'feel' is pertinent.i have had this happen a couple of times over the course of about 16 MRIs.with one NS nurse witholding the fact that i actually had an impinged c 7 nerve root(whcih totally explained my symptoms and agony)that occured when her boss(my NS at the time) actually placed the hardware in my c spine.go figure.you just really do need to see for yourself what is there.not every NS or neuro or ortho actually knows everything about what is possible as far as a pain generator,their overall knowledge and experience is what dictates how "good' they are at that.i was told by two other NSs that this cavernoma inside my spinal cord just did not cause pain,but man did i ever have it.but the third NS i saw at the U of MN knew right away(based on over thirty years of experience and alot of dealings with these little suckers)that my cav WAS causing the most freaky of my symptoms.it all depends on the doc.also,having any affectation of your sensory nerves(something is most definitely impeding nerve flow there) can cause problems and pain,it IS your sensory afterall.i really do think getting another opinion may be a good idea.it would appear that this doc really doesn't have a clue about your actual pain generators(i love that 'shrug' answer).but,see what showed up in that report just so you know they didn't blow something off.marcia
mindmltn
08-08-2007, 12:48 PM
I have hear in some rare cases where addicts feel more pain because they are addicted and their brain's are trying to fool them into taking more narcotics.
I doubt that is what is happening to you.
It is ludicrous that after surgery and a documented herniation they don’t think that you still may have issues causing pain.
It sounds like you have a doctor that doesn’t really care.
I would try to get another opinion on the MRI results since I have had three different Doctors read one of my MRIs differently and interoperate them completely differently.
It really depends on the doctor.
Hopefully you can get a physical medicine Doc or a pain doc to read the MRI instead of a neuro.
He should have never made you feel that way and that just sucks.
I am sorry for all of the trouble.
I hope everything works out for you and you get some straight answers
I doubt that is what is happening to you.
It is ludicrous that after surgery and a documented herniation they don’t think that you still may have issues causing pain.
It sounds like you have a doctor that doesn’t really care.
I would try to get another opinion on the MRI results since I have had three different Doctors read one of my MRIs differently and interoperate them completely differently.
It really depends on the doctor.
Hopefully you can get a physical medicine Doc or a pain doc to read the MRI instead of a neuro.
He should have never made you feel that way and that just sucks.
I am sorry for all of the trouble.
I hope everything works out for you and you get some straight answers
ozzybug
08-08-2007, 02:14 PM
Sharonn-
I am so sorry about this. This new phenom, "Opioid Induced Hyperalgesia" seems to be a crock of bull hunk to me. I almost feel like the DEA hired a bunch of doctors to create this finding so it would make it look like there is a valid reason to stop prescribing opiates to people who really and truly do need them. I know drug seeking and diversion is a horrible problem, but there are those of us out there that have valid, intractable pain issues and with all the HooHaa with the DEA, many doctors are scared to continue prescribing. It's almost like there is some kind of witch hunt going on, and the people who have an honest need for opiate medications are the ones who are paying the price. I have always said that if this opioid induced hyperalgesia is a real thing, then how in the world can they explain to any of us why we were hurting so badly long before we were ever even prescribed the first pain medication???
Anyway, can I ask if any of your MRI's were done with a contrast medium? If not, it could be that there is a problem that didn't show up. I have had several MRI's in the past years and the one they finally did with a contrast medium came back with totally different readings than the ones that were done without.
Having said that, I do have to add that there are some people who decide to wean off of their medications to see where their pain levels actually are and have found that they can actually function on lower doses of medications. Many people have tried this, but found that their pain levels won't allow them to wean down. There is nothing wrong with wanting to know and evaluate your pain in this way, but there is nothing wrong with managing chronic, intractable pain with medications and other modalities under a doctor's guidance either.
As for the doctor shrugging when you asked about scar tissue causing some of your pain. I'd have to say that it is very possible. Yes, scar tissue can cause many different problems- pain being one of them. Especially if there are any nerves caught up in the scar tissue itself.
Please do NOT allow yourself to feel guilty. There is no reason for you to feel guilt of any kind. You didn't ask for this pain, and like most of us- if you were given your choice, I'm sure you'd take living without any injury and pain over dealing with pain and having to take medications on a regular basis any day.
Don't let anyone tell you that you don't have pain. Just because they can't "see" a reason for your pain doesn't mean there isn't something there that is being missed. You know your body, and you know what pain is.
Please do not stop seeking answers, because there has got to be someone out there who can find out what is going on.
Sorry to have posted such a novel. I really hope you can find the answers you need without another person making you feel guilty for needing opiate medications. Good luck, and please keep us posted.
I am so sorry about this. This new phenom, "Opioid Induced Hyperalgesia" seems to be a crock of bull hunk to me. I almost feel like the DEA hired a bunch of doctors to create this finding so it would make it look like there is a valid reason to stop prescribing opiates to people who really and truly do need them. I know drug seeking and diversion is a horrible problem, but there are those of us out there that have valid, intractable pain issues and with all the HooHaa with the DEA, many doctors are scared to continue prescribing. It's almost like there is some kind of witch hunt going on, and the people who have an honest need for opiate medications are the ones who are paying the price. I have always said that if this opioid induced hyperalgesia is a real thing, then how in the world can they explain to any of us why we were hurting so badly long before we were ever even prescribed the first pain medication???
Anyway, can I ask if any of your MRI's were done with a contrast medium? If not, it could be that there is a problem that didn't show up. I have had several MRI's in the past years and the one they finally did with a contrast medium came back with totally different readings than the ones that were done without.
Having said that, I do have to add that there are some people who decide to wean off of their medications to see where their pain levels actually are and have found that they can actually function on lower doses of medications. Many people have tried this, but found that their pain levels won't allow them to wean down. There is nothing wrong with wanting to know and evaluate your pain in this way, but there is nothing wrong with managing chronic, intractable pain with medications and other modalities under a doctor's guidance either.
As for the doctor shrugging when you asked about scar tissue causing some of your pain. I'd have to say that it is very possible. Yes, scar tissue can cause many different problems- pain being one of them. Especially if there are any nerves caught up in the scar tissue itself.
Please do NOT allow yourself to feel guilty. There is no reason for you to feel guilt of any kind. You didn't ask for this pain, and like most of us- if you were given your choice, I'm sure you'd take living without any injury and pain over dealing with pain and having to take medications on a regular basis any day.
Don't let anyone tell you that you don't have pain. Just because they can't "see" a reason for your pain doesn't mean there isn't something there that is being missed. You know your body, and you know what pain is.
Please do not stop seeking answers, because there has got to be someone out there who can find out what is going on.
Sorry to have posted such a novel. I really hope you can find the answers you need without another person making you feel guilty for needing opiate medications. Good luck, and please keep us posted.
sharonn
08-08-2007, 05:06 PM
Thank you all so much...believe it or not, you are my ONLY support system now...others don't get it at all. I have read the entire MRI report and the only thing that it said other than the herniation was "significant changes around the fusion" and the way the DR. explained it was that nothing appeared to be impingeing upon a nerve...but I do agree that SOMETHING is affecting the leg nerves or why would the EMG be abnormal? For me knowledge is power and if I know then I will have a plan of attack or at least not feel guilty about the meds. I NEVER take them for any other reason than pain and if anthing, find they make me moody...so why would well-meaning pharmacists and drs. talk about "addiction" to me in their less than subtle way?It really pisses me off when people are suffering with legitimate pain and drug seekers ruin it for the rest of us. I am so sick of explaining to my own Dr. the difference between addiction and dependence...but then you guys know exactly what I am talking about. Such stigma....I believe pain control is in it's infancy and as the baby boomers age more...hopefully it will be addressed more in a better light. Thank you so much...I have an appt. in 2 months and they said they would repeat the MRI..I will ask for contrast. Should I ask to repeat the EMG(fun!) as it was a year ago? Love, Sharonn
sharonn
08-08-2007, 05:24 PM
Oh....I forgot to mention that I put myself into a detox so I could really see how my pain level was w/o narcotics.It was awful. I went home and stayed in bed . No bad pain until I resumed my household routine. I can't afford a maid and I have to have a life...so sadly, I chose to go back on the meds and pay "the price" as it were for a minimally active life. I proved to myself that I could do it, but for what? Who gets an award at the end of their life for martyrdom? My sister is an active alcoholic so I am particularly sensitive to the subject of addiction...the part that frightens me the most is the dependence upon a pill....without it I will not only be in pain but go into withdrawals, I remember it well and it wasn't pretty. My heart goes out to anyone who must bear that type of pain...brutal. I guess it boils down to acceptance of our weaknesses and the ability to accept what we cannot change. I was very angry after my initial accident. But the pity pot is worse. I read a lot here and all I have to say is God bless all of you...many are way worse off than me and I should be grateful forthe good things. But as we all know...pain will drag you down mentally, emotionally, and spiritually. Thanks again...I do feel better already ((((Hugs))))) Sharonn
sammyo1
08-10-2007, 09:48 PM
Sharonn, I am pretty new here been on a couple boards seeking answers, been in pain on & off along time, but pretty new to pain meds, but already I know the difference between addiction and dependancy, I have been getting several different pain meds to see what will work, also have gone to serveral different docs. to see who would look into my problem, did not even think about how that would look, used two pharmacies one I always use ,one on my way to work. Never thinking about it, till pointed out on this board, I was already embarrassed and the pharmacist knows me the minute I walk in (hope I am not to far off topic here) & doc. already started on telling me they want another doc to take over prescribing pain pills, Even though I fought them on taking oxycodone. Only on very small dose, nothing was working and really most days neither does oxy (10 mg) from the get go I have in the back of my mind to be careful with these meds. But honest I could not even move most days with out them, Its not like we all want to have to depend on them, I do love that saying "walk a mile im my shoes". Doc already talking perhaps pain management doc. for me, don't have a clue about that. I do know now I am walking in some of your shoes and Don't like it at all. I'll take the meds just to be able to go on day to day, who would't. What do they want people in our positions to do? Good Luck, Sammy
sharonn
08-10-2007, 11:25 PM
Hi Sammy...thank you for responding. I love to accomplish things and I do push myself at times...the quintessential tyre "A" personality. May I ask how much you take a day? Are you on an AD? I also take elavil at a low dose which helps with deep sleep and chronic pain. There is weight gain but quality of life is more important.Sharing our experiences with others is very beneficial....it can be a lonely place when you're hurting. Take good care. Sharonn
IZZY'SMOM
08-11-2007, 08:04 PM
My theory is this: As long as I want to be able to live my life to the fullest, and may have to depend on a med or pill, id rather do that, and enjoy the life it enables me to enjoy. The way things are going with health care and all, I feel like we may not have the luxury to have meds for long. Sorry to be off topic or a downer, but its getting rediculous. Where are our rights anyway...I get so tired of all of the crap...
xoxoxox,
IZZY'SMOM
xoxoxox,
IZZY'SMOM
sammyo1
08-12-2007, 12:10 AM
Hi Sammy...thank you for responding. I love to accomplish things and I do push myself at times...the quintessential tyre "A" personality. May I ask how much you take a day? Are you on an AD? I also take elavil at a low dose which helps with deep sleep and chronic pain. There is weight gain but quality of life is more important.Sharing our experiences with others is very beneficial....it can be a lonely place when you're hurting. Take good care. Sharonn
Sharonn, you may ask me anything you want, we try to help each other. I am super active and independent & this has been progressing for alittle over 2yrs. & would hit for periods of time, now of course it is much worse and not budging. I am learning, since May have not had 1 single day pain free, got worse & Worse...I pray and ask for paitence which I totally lack, I feel it is destroying parts of my life, I used to plan, now it is one day at a time, At first the docs. thought it was cardiac of course when they could not find anything they said you are depressed, that was bull, I know exactly when this started and how I injured myself. So yes I have tried ADs for several reasons, pain blocker, because at one point I started believing the docs. then I figured after this who would not be depressed. Cannot take ADs bad reactions to every single one I have tried, to be honest always felt worse. I take low dose of valium @ night, mostly it helps, not always.though, of course that is along with all the other meds, now of course the docs are looking into what is wrong since I am losing mobility. and swell and so forth, makes me angry it had ot come to this. I have hope that each day will be better and some days that is hard but I don't want this taking over my life, & I know that can easily happen. This board Is my AD, that is a fact. I am currently on oxycodone 10mg, just got off steroids, so motrin with skelaxin in between, and valium at night, just stared oxy, last week, along with lryica,that could change, going for tests this week, if nothing shows with Neuro Surgeon tests have to see pain management doc, back to shuffling around. I tried so many meds. I am sure like everyone else here. vicodin was only lasting max 3 hrs. Never in my life did I think I would be in this position. But here I am. I have been praying something comes of these recent tests, not knowing I think is the worst part., I cry, get angry, a little pity party at times then try to get back on track. What else can I do? I envy others, I admit, but there are those worse then me. I promised myself I would never take the ability to do what I want on a day to day basis for granted again, and yes I am alittle afraid, people tend to sooner or later think you are no longer fitting in, I'll cross that bridge as it comes, the worst is the guilt with my family, that I will have to work on. don't know if any of this sounds familair to you, but as you see you are not alone,I think we all feel that way. what do you take and does anything thing really help? Take care & talk to you later, Sammy
Sharonn, you may ask me anything you want, we try to help each other. I am super active and independent & this has been progressing for alittle over 2yrs. & would hit for periods of time, now of course it is much worse and not budging. I am learning, since May have not had 1 single day pain free, got worse & Worse...I pray and ask for paitence which I totally lack, I feel it is destroying parts of my life, I used to plan, now it is one day at a time, At first the docs. thought it was cardiac of course when they could not find anything they said you are depressed, that was bull, I know exactly when this started and how I injured myself. So yes I have tried ADs for several reasons, pain blocker, because at one point I started believing the docs. then I figured after this who would not be depressed. Cannot take ADs bad reactions to every single one I have tried, to be honest always felt worse. I take low dose of valium @ night, mostly it helps, not always.though, of course that is along with all the other meds, now of course the docs are looking into what is wrong since I am losing mobility. and swell and so forth, makes me angry it had ot come to this. I have hope that each day will be better and some days that is hard but I don't want this taking over my life, & I know that can easily happen. This board Is my AD, that is a fact. I am currently on oxycodone 10mg, just got off steroids, so motrin with skelaxin in between, and valium at night, just stared oxy, last week, along with lryica,that could change, going for tests this week, if nothing shows with Neuro Surgeon tests have to see pain management doc, back to shuffling around. I tried so many meds. I am sure like everyone else here. vicodin was only lasting max 3 hrs. Never in my life did I think I would be in this position. But here I am. I have been praying something comes of these recent tests, not knowing I think is the worst part., I cry, get angry, a little pity party at times then try to get back on track. What else can I do? I envy others, I admit, but there are those worse then me. I promised myself I would never take the ability to do what I want on a day to day basis for granted again, and yes I am alittle afraid, people tend to sooner or later think you are no longer fitting in, I'll cross that bridge as it comes, the worst is the guilt with my family, that I will have to work on. don't know if any of this sounds familair to you, but as you see you are not alone,I think we all feel that way. what do you take and does anything thing really help? Take care & talk to you later, Sammy
sammyo1
08-12-2007, 12:12 AM
I fully agree, my goodness can't live in pain forever with no help!
butrfligirl28
08-12-2007, 09:52 AM
Sharon,
I also tried Elavil, and while it helped me sleep, and gain weight, I didn't notice a difference anywhere else. I was hesitant to try again, but after several conversations with my doctor, and my irritability and anger effecting my relationships, I started Cymbalta. Now I feel like a walking advertisment! :)
Not only do I see and feel a difference, my dear fiancee does as well. I was having a horrible time dealing with all the emotions that come with this life, as well as awful pain at times. It had gotten to where at the end of the week, I would cry on the way home. My body and mind were in so much pain, I wondered how I would continue working, and if I could accept this as my existence.
I was hesitant, and honestly sceptical. I cannot tell you how happy I feel knowing that I was pro-active regarding my pain and my mood, and I am being rewarded for trying something new. My pain is better, my mood is better, my LIFE is better. Please consider trying something new. This is not an exact science by any means, and sometimes while we grow weary from trying new meds, we find one that makes all the difference.
I pray that you find some answers, and some peace very soon. You are not alone, and you have already taken active steps toward a better life simply by posting here. We cannot suffer through this and NOT be effected. Hang in there, you will find some answers, and some relief. Just don't give up, and keep trying. Take care my friend.
Amanda
I also tried Elavil, and while it helped me sleep, and gain weight, I didn't notice a difference anywhere else. I was hesitant to try again, but after several conversations with my doctor, and my irritability and anger effecting my relationships, I started Cymbalta. Now I feel like a walking advertisment! :)
Not only do I see and feel a difference, my dear fiancee does as well. I was having a horrible time dealing with all the emotions that come with this life, as well as awful pain at times. It had gotten to where at the end of the week, I would cry on the way home. My body and mind were in so much pain, I wondered how I would continue working, and if I could accept this as my existence.
I was hesitant, and honestly sceptical. I cannot tell you how happy I feel knowing that I was pro-active regarding my pain and my mood, and I am being rewarded for trying something new. My pain is better, my mood is better, my LIFE is better. Please consider trying something new. This is not an exact science by any means, and sometimes while we grow weary from trying new meds, we find one that makes all the difference.
I pray that you find some answers, and some peace very soon. You are not alone, and you have already taken active steps toward a better life simply by posting here. We cannot suffer through this and NOT be effected. Hang in there, you will find some answers, and some relief. Just don't give up, and keep trying. Take care my friend.
Amanda