Confused,Scared and Upset - Pain Management Message Board

sharonn · 08-08-2007, 08:33 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

feelbad · 08-08-2007, 08:48 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, 09:48 AM

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

ozzybug · 08-08-2007, 11:14 AM

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 ***** 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, 02:06 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 ****es 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