narcotics?
 

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.

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?

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.

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
:grouphug:

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. ;)

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.

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.

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.

It seems that you understand where I am coming from. You re made to feel guilty about having pain in the first place, or like your husbands friend with the anxiety (which I might add is an epidemic now due to our high stress , highly toxic environment). Why do they make these drugs if they are not going to prescribe them to people who need them?
I found it almost humourous when my mother (56 years old) went in for minor day sugery on her foot to remove a bunion, and without her even inquiring about medication, was written a script for 100 percocets .
But because I am 29, I unfortunately fit into the "drug seeking" age group
I think I mentioned how in Ontario, there has been such an extreme cut back into oxycodone prescriptions, and therefore less being leaked onto the streets. So, previous abusers had no choice but to seek out and abuse fentynl (sorry if I keep spelling that incorrectly!). They scrape it off of the adhesive strip and smoke or inject it. They are dying as a result.
Now I am not saying that addicts should continue to abuse their drug of choice -oxycontin at all. They should get help for their addiction.
But that leaves myself, and countless others not getting the pain relief they need.
I cant tell you how many doctors have told me to take tylonal (highly toxic to the liver ) or advil ( great for heacache or sore muscles, not so great for the burning, stabbing hell of neuropathy).
I tried my first tablet of oxyneo time release and I might as well have taken a sugar pill, because it did nothing for my problem.
I am now in a panic and am planning for an ER visit sooner or later.
Again, I compare these drugs to anti depressants.
If a depressed person was on an SSRI, and it was helping, why would anyone stop them from taking it? The only difference that I can think of is that you cant crush and snort anti depressants.
In the more than 2 years tht I have been trying to get answers and help for the chronic pain, I have not really ran into even 1 doctor who I relly felt listened, cared, and let me choose what made sense. They are rushed, hardened to suffering, and have been brainwashed by pharmaceutical companies .
I also have to mention that I have no health insurance. Oxycodone was very affordable.
I went to fill my prescription for the cymbalata, and it cost me $30 for 10 days worth. So needless to say, this will be $90 a month just for the lowest dose per month.
I dont know who to voice my opinon and concerns to . I will take some time to figure that out.
I m not even 30 yet-my future is on the line. I think I mentioned that I had to quit my job, lost my boyfriend, dropped out of school (ouldnt afford it ater quitting my job) etc.
Oh the madness and sadness!
I appreciate the response . It is comforting to be able to relate, isnt it. Sometimes I feel like its all I have!

Sorry, I didnt address your question.- I have taken information in before to my GP and she actually held up her hand to my papaers and shook her head.
This is typical. :confused:

Hi featherbullet
 

It is true what you said. Docs. are indeed cutting back on scripts in this country too. It also hurts a person when their pain is not taken seriously by a physician. Our quality of life is on the line. I just think there were so many who abused, that now all doctors are really under pressure not to prescribe.
I keep a pain journal, and that helps me keep track of the pain etc. I am 61, and there were no issues in prescribing for me. I decided to try suppliments, and this did help reduce some of my pain. I hope you can find a compassionate doctor willing to truely help you. You are also right that what others have done should have no bearing on your case, unfortunately it does to the doctors. I tried to get a pain specialist to prescribe additional pain medications for a serious surgery and he wouldn't do it. Neither would the surgeon... I didn't have the surgery. Isn't that kind of crazy? I now see a physiatrist, which really has put the pain on a lower level. ginnie

Bunion surgery is extremely painful and lasts for a long time.

It is not a minor procedure.

Doctors will give serious drugs for surgical patients.

But PN ....is difficult to prove, and they don't trust the patients'
descriptions, IMO.

featherbullet
 

I am on Oxycontin every 6 hrs. and Oxycodone (percocet) for breakthru so do understand the need to function in spite of terrible pain.

I think Suzanne, as well as myself, because of experience with the ways doctors seem to look for signs of abuse (doctors are really being held quite accountable these days themselves because of so much abuse) might be trying to help, not by judging; but by giving some insight to better help with ideas on how possibly to get doctor to better prescribe for you.

Living with chronic pain is very upsetting. Hope you soon have the necessary meds to make life at least tolerable.

Gerry



Gerry

QUOTE:

"Yes, you're totally correct, with some docs. I just fired one because she actually said "I'm the doctor"."

I completely agree with this statement, it is pretty much my experience. I agree with all who said the doctors want you to walk in get the pill of their choice, be stupid, leave and don't come back. The certainly DON'T want us to question them or have a brain and opinion on our own health care.

Can't offer anything about meds but wanted to agree with how doctors treat patients who have a brain about their own health.

Extremely painful? My mom had no issues. She did not even need any medication! It was uncomfortable fitting into her shoes because of swelling though . She took a few ibuprofen for swelling.
And just a a point of reference- I had exploratory surgery where they burned off my endometriosis, and removed a growth from my ovary, and I was given very very weak hydromorphone. (1mg) my stomach was pumped up with gas which ,and for 2 days after the surgery caused an insane amount of pressure in my chest and shoulders. But - too bad for me ! I was 27 so I MUST have been an addict.
All that will happen here is I will be tapered off , have nothing for pain, and end up back in the ER..
Why not keep me on the non abusable form -oxyneo?
It will be interesting to see how things change when I am diagnosed.
Such is life ,right ??

Well, the people I know who have had bunions removed,
had long painful recoveries.

Maybe your mother had a modified surgery, or some new
technique is being used.

Mrs. D,
 

My daughter was only in her late 30's when she had bunion removed. Very painful. In fact, years later still has issues. Her big toe does not lay all the way down.

My doctor told me I should have mine removed. No thank you; after seeing what my daughter went thru.

Just pick shoes carefully and use a buion gel between the big toe and next toe.

Her mother was quite fortunate.


Gerry

I'm sorry guys! That seemed pretty insensitive.I was genuinely surprised.
I guess my mom was lucky/has a high tolerance for pain? Unlike her daughter!! :(

So just a small update- I started the oxyneo yesterday morning. Maybe I have mentioned this-but the lyrica makes me dumb as rocks and forgetful. I don't feel like I took anything! Im loading advil on top of it, but that is also not safe.
I don't see this going well. If I was feeling better , I would start the cymbalta, but would prefer to wait until the weekend where if I experience the side effects, I can be at home under the covers.

Remember, I see the neurologist Feb 14th after an 8 MONTH wait. I see my pain doctor on the 6th I believe. By that time I will be begging him for something other than the small dose of time release oxyneo.

I missed work today because I was kept up until 2am with deep throbbing in my left calf/ankle area. I honestly thought I had a blot clot . I hadnt had that sensation before. It was scary. Needless to say, this pain is keeping me from work, and a normal life. just pills, rest, pills, rest, and motivation from you wonderful people. :hug:

Does anyone have experience with Nucynta? (Tapentadol)

I too had the endometriosis surgery...6 times, many years ago. That gas shifting the organs is quite uncomfortable, in deed. I don't think your lack of pain meds for that was "addict" related. I never got pain meds for that procedure...other then maybe a Tylenol #3 for the first day. Frankly, I don't think they prescribe for that because the pain meds aren't effective for that type of pain (injected gas).

I read on another post that you take 25mg at a time of Oxy...that's quite a bit, I think. maybe they would be more inclined to reduce your dose and keep you on a smaller dose. I would also seek out a specific pain mgmt doctor, instead of neurologist. Pain mgmt docs may have other options that will help you.

I take percocet, but only 2.5 mg (5 for one of the doses if real bad), so probably not really qualified to comment on this thread anyway. Just keep searching for someone to help you.

Just adding because you posted while I was typing. Apparently you may already be seeing a pain mgmt doctor. Sorry, I may have missed that in an earlier post. Hopefully your new neuro will help.

featherbullet
 

Don't have experience with Nucyhnta; but do with Cymbalta. I take some pretty strong meds; Oxycontin, etc., but tried Cymbalta a few years ago and that put me in "la la" land. I can handle the narcotics without that feeling.

My sister-in-law had the same effect with Cymbalta last year; but no longer takes it. She is now on Lyrica and it is not causing her a problem like the Cymbalta did.

Just for your info.

Gerry

Hi, thanks for your response!
Yes, I do see a pain management specialist..who apparently specializes in telling patients to join his and his wife's meditation group for 450$! He thinks that my nervous system is in overdrive. That's interesting to hypothesize, but doesn't help me any.
As far as the surgery for endometriosis goes, the medication was for the pain of the surgery, ( the three incisions, removal of growth, and burning of the endo itself. The gas portion of it was just an unpleasant and unexpected extra bit of pain. I'm very sensitive..if you so much as pinch me I yell. Fibro maybe?
I suppose 25mg at a time may be a lot, but its all relative. They make oxycodone in 80mg tabs , if that gives you an idea.

Nucynta is fairly new and not very popular, but I suggest Googling it to get accurate details. Its not as "strong" as oxy, but works in different ways.

Thanks again for everyone's replies. Love the support and interest, and especially your stories.

Have you tried meditation and supplements?
Every suggestion here is well meant and worth a try.

yes, I have tried both. I m on supplements (lipoic acid, L carnitine, b12, natural anti inflammatories,liquid b50 complex, and high potency fish oil

I did a breathing and meditation course in the summer. I was far too antsy for it but yes, I did enjoy it : )