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Unread 01-21-2013, 12:44 AM   #1
lined_in_silver
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Hi, severe idiopathic neuropathy over here from neck to my toes ( moves around but always somewhere)
I've been on oxycodone for about 9 months now which helps 90% of the time. I am also on Lyrica.
My doctor says that oxycodone is addictive (duh) and is tapering me off of it.
Has this happened to anyone? How do I convince him that this has saved my life!?
He wants me on cymbalta instead.
I am already thinking about the great length I might go to just to acquire this medication.
Are doctors really doing what's in the patients best interest? Or merely covering their butts.
Thanks for listening.
This place is very helpful for me.
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Unread 01-21-2013, 11:34 AM   #2
Susanne C.
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Quote:
Originally Posted by featherbullet View Post
Hi, severe idiopathic neuropathy over here from neck to my toes ( moves around but always somewhere)
I've been on oxycodone for about 9 months now which helps 90% of the time. I am also on Lyrica.
My doctor says that oxycodone is addictive (duh) and is tapering me off of it.
Has this happened to anyone? How do I convince him that this has saved my life!?
He wants me on cymbalta instead.
I am already thinking about the great length I might go to just to acquire this medication.
Are doctors really doing what's in the patients best interest? Or merely covering their butts.
Thanks for listening.
This place is very helpful for me.
If you are young, there is a proper reluctance to prescribe medications that you will effectively be on for the rest of your life. There is also a greater chance for abuse among younger patients. Do you have test results that indicate the severity of your neuropathy? My experience has been that while you can indeed be in severe pain without clear test results on a skin biopsy or EMG, doctors are more reluctant to prescribe heavy pain killers. I know that I am fortunate to have tests which indicate the progression and severity of my neuropathy, which is hereditary.

Is the Lyrica helping? I have constant, debilitating pain in my legs and feet. It would wake me up at night. I am currently on 15mg of time release morphine (ms contin) twice a day, and 7.5 mg. oxycodone as needed. I take two a day. This is a fairly moderate amount but I no longer wake up in pain and the morphine makes the oxycodone much more effective. Our doctor was very careful to explain to my husband and I that I would probably be on this medicine or something like it for the rest of my life, but that is different at 51 than it would be at 25.

You may need a different doctor or a pain management specialist, but the fact that your neuropathy seems to move around may be what is causing your doctor concern. That is pretty unusual and there isn't really a protocol for him to follow.

The more that you insist that you need the oxycodone, the more red flags he is going to see. You must be careful how you talk to doctors about pain medicine. If it really helps you in your daily functioning, calmly stress what you are able to accomplish with it vs. without it. It is all about restoring function, not just relieving pain. You must not expect to have all of your pain eliminated, that is not the goal of pain management. You may be able to get him to agree to restore your oxycodone if you try his other ideas and they do not work, but you must appear to respect his opinion as to your treatment in order for him to respect yours. Good luck.

Edited to add, in response to your last question, most doctors want to help, but they all want to "cover their butt" even if that means untreated pain.

Last edited by Susanne C.; 01-21-2013 at 02:08 PM.
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Unread 01-22-2013, 03:54 PM   #3
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I took it for a burn, 10 days later (after they discharged me from the hospital, and I was on the pills only) I decided not to take one, see how I did. I was in full blow withdrawal, major body shaking, feeling freezing. Took another pill and I was totally fine. Doc didn't believe it because I never got up past 1 pill at a time, but I'm sensitive. It took me 6 weeks to get off of it, down to 1/4 a pill at a time. To have to be addicted to that, physically and not mentally, was really hard. I didn't want to take it, but my body made me. I'm really scared about the need for opiates or narcotics in the future. Vicodin either doesn't work or makes my stomach upset. I've tried Ultram and it made me puke and my body hated it.

I will fight being put on pain meds as long as I can, but I do smoke pot every single day (I'm in CA, it's prescribed). I can do that and be a functional human being (cook dinner, clean, be a parent), and not go into withdrawals if I don't get it. I think that's a big thing, me being able to work and function without pain meds. I know a lot of you out there are a lot worse than I am, and in a year I might eat my words. I keep seeing posts by docs that say "my clients are on XYZ and Methadone", ugh, I can't imagine taking something that strong. I feel for you that have to deal with it.

You doc needs to find something to replace the Oxycodone! Or you'll self medicate, right?
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Unread 01-22-2013, 07:09 PM   #4
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Where abouts are you? Here in the UK my pain consultant prescribes Lignacaine (lidocaine) Infusion and I am able to lead a normal life by getting this every 6 weeks. I don't think it is used in the US.
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Unread 01-22-2013, 09:36 PM   #5
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Quote:
Originally Posted by featherbullet View Post
Hi, severe idiopathic neuropathy over here from neck to my toes ( moves around but always somewhere)
I've been on oxycodone for about 9 months now which helps 90% of the time. I am also on Lyrica.
My doctor says that oxycodone is addictive (duh) and is tapering me off of it.
Has this happened to anyone? How do I convince him that this has saved my life!?
He wants me on cymbalta instead.
I am already thinking about the great length I might go to just to acquire this medication.
Are doctors really doing what's in the patients best interest? Or merely covering their butts.
Thanks for listening.
This place is very helpful for me.
There are other options. I used to be on the oxy stuff, but I couldn't afford it, (even with my pharmacy discount, I was still paying over $500/month!)
If you truly need around the clock pain management, you might try asking about the fentanyl patch. This way there aren't any 'pills' which could be diverted (in your Dr's eyes that is.....I'm not saying you would do this )

They work very good for my lower extremity (and back) neuropathy. When changed every 72 hours, there isn't much room for withdrawal symptoms to come on.

Just a thought....

Rae
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Unread 01-22-2013, 11:33 PM   #6
lined_in_silver
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Thanks for the replies.
OK, so first of all, I am turning 30 . I would have the proper diagnosis to prove my complaints if the health care here in Ottawa, Ontario Canada was better. I have been waiting for 8 months now to see a neurologist. This is a huge city. Before I realized what this was, coupled with undereducated, rude, dismissive doctors, I was tossed around to different specialists all of whom were not the right doctors. I figured out on my own ( online, and by simple elimination) that burning, numbness, etc was nerve related.
I did in fact try fentenyl already. It was inconsistent as hell. I was either couch bound from being so sedated, or I had no pain coverage at all.
I should point out that for the first year of this, I did not ask for or use any medication.

The lyrica did seem to help after 2 weeks for about 2 months, and then sort of just stopped helping. However, if I decrease my dose or miss a dose, I am worse off.

I don't really care that kids are abusing this drug. Its not my problem, and should not affect my care.
That's like banning the sale of alcohol because some people are alcoholics.
Anti depressants cause side effects, with drawl symptoms, and usually the body develops a tolerance and as a result, the dosage needs to be increased. People also overdose and essentially become addicted to the way it makes them feel.
If something is working, why change it?
Give me the oxyneo, which can't be abused, if I seem so suspicious.
What happened here is the doctors tightened their grip on this drug, so kids then went and started abusing fentenyl. See how that doesn't work? They are now overdosing and dying because of the potency in comparison to oxys.
I have better things to do than ruin my life making up a story about being in pain. Had exploratory surgery, quit a good job, lost a long term relationship, etc.

Anyway, I hope to hear more ideas. And please, no judgement.
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Unread 01-23-2013, 09:03 AM   #7
Susanne C.
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I am on narcotics, running a household of 5 and homeschooling, so I hope that you didn't think I was being judgmental.

Rrae, you must have been on OxyContin, oxycodone is cheap. We pay out of pocket up to our deductibles and mine runs about $45 month.

You are asking for more ideas but being dismissive of the ones offered. It DOES matter how you approach doctors about pain medication, and being all freaked out isn't going to help your cause, no matter how much you genuinely need it or how incompetent and uncaring the doctors may be. I have been to my share of nasty doctors. My neurologists dismissed me because there is no treatment and "they don't do pain management." I am fortunate to have a family doctor of more than twelve years who works with me and understands me, but this is rare. You have to build trust somewhere. It does sound like you need to find a new doctor, but try not to carry hostility and resentment into the office with you.

It is fine to vent on here, but it won't get you anything in a doctor's office. They are unfairly inclined to think all women are hypochondriacs and hysterics as it is.
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Unread 01-23-2013, 11:13 AM   #8
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Quote:
Originally Posted by Susanne C. View Post
I am on narcotics, running a household of 5 and homeschooling, so I hope that you didn't think I was being judgmental.

Rrae, you must have been on OxyContin, oxycodone is cheap. We pay out of pocket up to our deductibles and mine runs about $45 month.

You are asking for more ideas but being dismissive of the ones offered. It DOES matter how you approach doctors about pain medication, and being all freaked out isn't going to help your cause, no matter how much you genuinely need it or how incompetent and uncaring the doctors may be. I have been to my share of nasty doctors. My neurologists dismissed me because there is no treatment and "they don't do pain management." I am fortunate to have a family doctor of more than twelve years who works with me and understands me, but this is rare. You have to build trust somewhere. It does sound like you need to find a new doctor, but try not to carry hostility and resentment into the office with you.

It is fine to vent on here, but it won't get you anything in a doctor's office. They are unfairly inclined to think all women are hypochondriacs and hysterics as it is.
Hi there, you seem very interested in my thread!
I do not go into the office hostile and resentful. I bring my knowledge and hope in, and always leave upset, which then turns to anger when I return home and have time to let it sink in.

I refuse to be told that I don't have pain, to meditate instead,or increase the lyrica ( can't walk straight, drive, anything on higher doses).
What doctor s want is for you to go in there, shut up, not know a thing about your own body, and take the prescription, walk out, and not come back.
Sorry, but I will not stand for that kind of health care. Its disgusting.
And just so you have an idea,Susanne, I agreed to his taper plan, said that I would try the Cymbalta, and see him in a month. Not exactly hostile. And this IS a brand new doctor, because I moved to a different town.
I am allowed to have an opinion, and be angry with the way I have been treated.
I was also under the impression that this group was to be supportive. Perhaps you could rephrase your answers in the future so that they do not make the other person feel like they are being scolded by their mother.
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Unread 01-23-2013, 11:35 AM   #9
Susanne C.
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I deeply apologize for having taken the time to respond at all. I only did so because I am one of the relatively few list members on opiate therapy, and i am fairly well read and knowledeable about it. I said nothing that I do not believe to be true, I was only responding to what you said about yourself. I am interested in the topic, not in your thread per se.

Last edited by Susanne C.; 01-23-2013 at 12:08 PM.
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Unread 01-23-2013, 12:13 PM   #10
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Quote:
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What doctor s want is for you to go in there, shut up, not know a thing about your own body, and take the prescription, walk out, and not come back.
Yes, you're totally correct, with some docs. I just fired one because she actually said "I'm the doctor". Really? And I'm some idiot who can't read or understand what my body is feeling? If you're in pain, you just can't get anything done, nor can you heal, if healing is an option at all. And of course you're going to come off as pissy if you don't feel well. Vent away!

I've been watching your thread because I'm interested to find out what options there are. My husband and I were just talking about Xanax and how hard it was for his friend to get it. She goes to the hospital or docs and they treat her like a junkie, when all she has is real anxiety. That's how they treat you about pain meds too. Nope, you can't have that because you'll do whatever it is they think junkies do. Like you're faking all your pain, nope!

Can you go in there and say "I've researched these meds, and I feel I need this or this" and present clinical information on your findings? My Neuro has given me options each time and allowed me to do my own reading on what he's suggested. Write it all out, I find I get too emotional if I have to discuss these things out loud, and it weakens what I'm trying to say.
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