Pain mgt advice
peppermintwindfarm posted:
Been searching and reading for days and found this forum, did a lot of reading here and think I might find some helpful input.
Quick (ha ha) Summary,
I was dx 10 yrs ago with HepC, didn't respond to tx and have since been additionally diagnosed with: portal hypertension, cryoglobulinemia, rheumatoid arthritis, sicca syndrome, peripheral neuropathy, chronic headache ,bursitis, gout, occasional migraines and I might be missing something (it's late).
For the last 7 years I've been taking pain meds. I have pain- I can elaborate another time but suffice it to say sometimes it's difficult to walk, sometimes my feet hurt so bad the weight of a blanket is intolerable and I sleep with my feet out! Lovely picture that! LOL!
anyway, I have experienced the pain med rat race up close and personal! I HATE it. And even more than I hate that people don't get it I hate that I even doubt myself sometimes! I have a decent doctor and he allows me to rant and rave occasionally and I generally analyze everything to death and then he'll say something silly and make me laugh. Good doc. About 2 years ago I reached a plateau where oxy dose wasn't working (20mg twice a day/ 5mg short acting for breakthrough) and I just wasn't happy about going up from there-took me 5 years to get there. Some other issues outstanding (another discussion) and I decided to grit my teeth and go down. over the year I managed to get down to 10 mg 1 or 2 times No breakthrough help. After worsening spinal disc problems last summer it looked like surgery was going to be a very real option and I began to worry that no pain meds would work for me if I didn't take a break. I quit (tapered down) taking pain meds in August, suffered for sure, had neck surgery in November. There were some serious bumps in that pain mgt road but I managed to deal with the 4 weeks of pain meds the surgeon allowed and had great relief from the disc issues. hurrah! However, as far as the rest goes I am miserable. I am in pain every day, some not so bad some intolerable. After reading some of this community's issues I think maybe I shouldn't be complaining at all but pain is subjective and no amount of "there's people worse off" seems to alleviate my pain and fatigue and lethargy. I've had one conversation with my doc about restarting something, ANYTHING! I just don't want to live like this. Without the pain meds I've reduced my activities drastically, I've isolated so much more than I ever thought possible. I have trouble sleeping because of pain so end up taking ambien- which has its own problems let me tell you! The whole shaving the cat in the middle of the night on ambien is a story for another time!!
So here are my dying to know questions:
Am I feeling so awful because I'm in pain/ fatigued or because I'm still "withdrawing" from pain meds? A pain specialist at the hospital during my neck surgery commented that sometimes long term opiate use changes things chemically in the brain, and may take years to adjust. I just can't see laying on the couch in my pajamas for years being an ideal situation.
Is there something else out there I can take? I've been researching suboxone. It's used primarily for opiate addiction recovery but is used for chronic pain specifically in Europe and off label here in the US. I mentioned it when I first heard of it and my doc just said it was a CD thing. Some of the things I've read since suggest, a) it works better at a low dose than oxy. b) it works longer than oxy. c) it is gives the relief without the "euphoria" that I'm told I'm really after in the first place. OK, I'M BEING SARCASTIC a bit on that last thing! I did say I'd been through the pain med rat race and yes I've been told that I'm addicted, had a LPN refer to me as "that narc patient."
Well I'm running low on characters and no one really wants to read a book here but I'm sort of desperate for some intelligent, helpful discussion about what to do!
dfromspencer responded:

In your case, I would direct you to speak with both, Annette, and C.T.Beth!

They both have experience I never had, and they have been here a lot longer than I. All I can say is, I hope you find some relief from all this?! NO ONE wants to be in pain, and all we ask is for some relief from it?! I hope you get that!!!

Good luck to you!!!

ctbeth responded:
Hi from Connecticut,

I think Dennis made mention of me and Annette because we've both been "regulars" on this site for a long time, and we're both Registered Nurses. There are other RNs, too, but she and I participate quite a bit. Just so you know that we're not moderators or anything more than women in pain who happen to be RNs.

First, bio-dependence is a normal physical and chemical phenomenon. It will happen to most persons who take daily opiate analgesia.

To contrast, addiction is a psychological disorder. There is a gentleman who participates here names Cweinbl. He posts brilliant information (referenced) about how low is the actual risk of addiction for us who are prescribed opiate therapy for pain management. If he doesn't reply to this discussion, you can look around this site a bit and find his contribution to many discussions.

The risk of addiction for persons prescribed opiate med for management of chronic pain is something like 2-3%.

Next, regarding fee like tired, "euphoric", loopy; if daily medication is required, those type of side effects will go away in a while. A while can be one week, or a few months, but they will dissipate.

I would urge you to consult with a pain management MD. Your primary care, or any of your MDS,made pending upon your insurance requirements, will have to refer you, as pain management is a specialty.

Pain management doctors do not diagnose the reason for your pain. Of course, they will work with your care providers and will communicate about your care.

Since RA can be extremely painful, you may want to see a rheumatologist. This MD may prescribe pain med for you, or refer you to pain management.

Do you know the cause of the peripheral neuropathy?

Regarding your experiencing withdrawal now from discontinuing OXY (long acting?) in November. No. Acute withdrawal from oxycodone lasts about eight days.

As far as suboxone: it would be preferable to see a pain management doctor and let him/her do his/her job and decide which pain med would be the best fit for you.

Twenty mg of OXY twice a day is a very, very low dose, especially since you've been taking it for seven years.

Unless you have a history of addictive disorders, which seems unlikely since you've been safely medicating for years, if I was in your situation, I'd be concerned with getting pain relief, and not the specific agent and/or dose.

If you have become tolerant to 20 mg, then you need a dose increase. If, for some reason, you no longer require opiate therapy, you and your MD can slowly decrease your doses to minimize the chance of withdrawal. It's not a difficult procedure to "wean down"; it just takes a bit longer than abrupt discontinuance, but it can be done with no discomfort.

If you click on my name or little "mug shot", you can read a very brief synopsis of my story. At the end of the narrative, you'll find my email address. If you'd like to talk in private, you may email me. If you do so, please alert me here, as email from an unknown sender may go into my junk folder. If I know that you'll be writing, I'll keep a watch on that folder.

I'm thinking that you'll be getting more replies to your post, so check back often.

Last, I hope that you'll become part of this community. Bothers are many really good folks here who have helped me so much through the last few years.


peppermintwindfarm replied to ctbeth's response:
I'm always going through this circular chicken and egg discussion in my head: Does the pain med make me feel motivated because of the pain relief? or something else . . . eeeek! a high?! And so since I've quit taking it am I feeling like a slug because of pain or lack of pain med. Does this sound like a ridiculous discussion to have with oneself? Another problem I have is that I HAVE to take the pain meds when the dose wears off or I get withdrawal symptoms-uncomfortable to say the least. If I have less pain I'd like to take less or miss a dose and I was never able to do that with oxy. I have been snubbed by several rheumatologists ( don't think they like the fact that I have HepC) one flat out said she didn't know why I had high rheumatoid factor and arthritis but she couldn't help me. I find that lots of docs just aren't interested in sorting out the Hep C from concomitant diseases and the Hep C specialist isn't really interested in anything but the health of my liver (he's a transplant guru in this area)
in the medical community I often feel like the bastard child of ugly people.
ctbeth replied to peppermintwindfarm's response:
Hi again.

Yes, I know; we all probably know. You want to know what's the pain under the opiate, but you cannot be off of the opiate long enough to find out before withdrawal.

Seriously, if you've been taking 20 mg for seven years, chances are that you're not getting high.

Are you taking any pain med now?

Do you know what is causing the pain? Is it the RA?

I have to ask why you decided to reduce your OXY when you weren't getting such great relief. It's certainly not uncommon for people who take daily pain med to require surgery and post-op pain management.

You also say that you do have a "decent doctor". This is really an asset. However, if your pain isn't being properly managed by this doctor, then please ask to be referred to a pain management MD.

This will make a difference. Your pain needs to be treated and you need to feel comfortable with the reality of your need. Do you know hat I mean?

Yeah, there can be a lot of unnecessary baggage related to taking opiate pain therapy. It's not anyone but your business and no one has the right to make judgement of you based upon what you need to do for comfort and function.

Hang in there,

peppermintwindfarm replied to ctbeth's response:
There are two reasons I reduced my oxy and then discontinued it last August. One reason is that I really wanted to know after 6 years how much pain I could tolerate. Another, and perhaps more acute reason, is that I had an adult child staying with us that was addicted to opiates and had begun pilfering my meds. When it came down to it I figured if there were no meds to take there could be no taking! That issue has been resolved, after much intervention and prayer, and that person is doing fantastic and living elsewhere.
I have doubted myself when it comes to the pain meds- I KNOW in my head that i'm not "addicted" I've just met too many people that go crazy with dosages and I never did, I rarely took more than what I was prescribed. But the whole rat race gets to a person- I'm sick to death of hearing about prescription drug abuse. I know it happens, hell we've experienced it in our own family.
a lot of my pain is attributed to inflammation, whether RA or other immune response is at fault. Cryoglobulimia can be painful, my blood gels when it gets cold-well I live in the coldest state, in a 135 yr old farmhouse, so that pretty much means November through March I have to be very careful with hands and feet getting cold. I understand that many chronic HepC patients suffer from moderate to severe chronic pain, it doesn't seem that it is well understood. I do have obvious joint swelling quite frequently. I also have some profound osteo arthritis in one foot and my neck- the result of some very old horse training injuries.
I so appreciate your affirmation Beth, I don't feel quite so alone knowing that others go through similar things.
One thing my doctor and I agreed on beforehand was that if I decided that pain meds were necessary he would prescribe them again. It's really looking like that may be the route I have to take. It has been miserable most of the last 5 months, I've drasitically reduced my activity, which doesn't help anything-sleeping-well being, etc.
annette030 replied to ctbeth's response:
I really have nothing to add to what Beth has already said. I will keep up with this post, and add anything I feel necessary.

Take care, Annette
annette030 responded:
annette030 replied to peppermintwindfarm's response:

I recently saw a PM specialist. I had some questions about opioids, I have been on them daily for about 15 years now. Although, I have not had severe side effects, I am curious about what life would be like either off of them or on much lower doses. The good doctor was very positive, he said that I may well not need them anymore, or that I could do quite well on lower doses, or I might find I needed them on the same dosing regimen. He suggested I go VERY slowly, and decrease the long acting one first. I had already decreased the long acting opioid from 30 mg. per day to 25 mg. per day, now I am working on decreasing it another 5 mg. per day.

I had stopped taking Ambien already, although not an opioid, I had also been on it for many years. I had no adverse effects at all, but was curious about doing without it. Life is fine, I have restless legs, and that has gotten somewhat worse, but it is tolerable so far. I had no withdrawal symptoms at all. I did very slowly decrease the dose from 15 mg. at bedtime to nothing at all.

Take care, Annette
cweinbl responded:
If your pain is not well managed, why decrease your medication? I would have done the opposite.
peppermintwindfarm replied to cweinbl's response:
I think I have a good doctor too, we've been trying to work through this for awhile now. I did start taking Meloxicam late December. That seemed to work a little at first then not so much. At our last discussion I agreed to try Lyrica- I'm not a fan of anything in the direction of Neurontin but he thought it might be different enough to warrant a try. He's working with me so I thought I'd work with him and give it a go. NO go! My insurance refuses to pay for it-now granted I understand it's expensive but at the amount of money we're paying for premiums-400 per week, plus 4500 individual deductible I say PAY FOR IT! But that's a discussion for another time. Ins Co tells doctor to prescribe . . . guess?!! . . . gabapentin! Which is Neurontin. And I refuse to take it-tried it once some years back and felt like the walking dead. I couldn't think straight, felt like a zombie and could hardly accomplish basic chores. Oh yeah and I think I gained like 20 pounds.
What I was trying to do was see if there is a medication out there that could give me the relief I can live with that would be an alternative to opioids. I'm starting to think the answer is NO.
I did have a frank discussion with my doctor during which he explained to me that I was a perfect pain mgt patient- following instructions to the letter-never taking more than prescribed, etc, etc., and that my worry about "addiction" was more semantics than reality. Yes, my body was "dependent" on the medication but that is a separate issue.
If my choice is between Neurontin and an opioid I'll take the opioid thank you very much!
I still think the suboxen is an idea worth trying- my doc is not
"certified" to prescribe it but in our discussion he did say he'd talk with another clinic doctor that is and even consider getting the necessary certification himself.
I appreciate the input immensely- I don't know anyone else dealing with these issues and once you bring oxy- anything into a discussion with most people they look at you funny like your running a scam or something. Like "sure" wink, wink, " you HAVE to take oxycontin, that's what they all say."
I'm sick of that attitude, I bet no one says that to an insulin dependent patient!
annette030 replied to cweinbl's response:
My eye doctor told me that my double vision was due to the opioids I was on. This was a good enough reason for me to get off of or decrease the opioids, I am sure other folks have their own reasons. If nothing else, I have been able to decrease the methadone.

Take care, Annette
annette030 replied to peppermintwindfarm's response:
Please, do not discuss any medications with anyone, at least not by name or type of drug.

Only your doctor needs to know, and hopefully he/she is prescribing them.

Take care, Annette
cweinbl responded:
If you need powerful pain medication, it doesn't make sense to stop or decrease it. So why the desire to reduce the medication? Is your pain that much lower?

About 1% of all people with chronic pain who use opioids and who have never before had an addiction disorder become addicted. Withdrawal only comes into play when you decrease or stop a medication that you've been using for a while and it lasts at most a few days. Withdrawal will not make you depressed as its effects are very temporary.

Many people use opioid medications at a high dosage for 30, 40 and even 50 years, with no major side effects. They bind with opiate receptors in the brain, as do endorphins, which are a natural substances in the body. They will not damage your internal organs, make you sick in any way or make you addicted. They might make you constipated.

Most people using such medications not only deal effectively with a career, they are also effective as a spouse, a child, parent or grandparent. So you can enjoy some of life's rewards with potent medications, or you can decrease them and be sad and in pain. What's the point being a martyr? If I've misread your comments, I'm sorry. But what I'm hearing is, "I'm in pain and I'm decreasing my pain medications." No?

When pain meds don't work for you, the answer is simple: 1) increase the dosage and/or change the breakthrough drug, 2) at maximum dosage, move to a more potent drug (in your case that might have been Fentanyl), or 3) rotate to a chemically different medication temporarily. After a few weeks or months, you can return to the original medication with improved efficacy.

If you no longer need the medications (ergo, you no longer have as much pain), that's terrific. congratulations. If you still have a huge amount of pain, then there are multiple options for new and different medications that can provide even better pain management than your existing drugs did. This happens for millions of chronic pain patients all of the time.

Many, if not most of us here recognize that we will never have less pain and we accept that we may always require powerful pain medications. People with chronic pain can often resume a fairly normal life by using more potent medications and/or at higher dosages and with different BT meds.

Bottom line: Your existing pain medications were by no means the highest or most potent drugs. People can use such very powerful pain medications indefinitely without physical damage, psychological damage or addiction risk. I have the latest research on this if you are interested.
annette030 replied to cweinbl's response:

I responded to your question of why decrease or stop it entirely above. The pain management doc I went to earlier this month did not agree with the eye doctor but he did come up with two ill effects of the long acting opioid I am on, neither of which are problems for me, yet. Thank goodness for that, but how about next time I see him? One year ago he only had one adverse effect to tell me about, now he has two, will he have three next time? IF I can get off completely, fine, if I can cut back, fine, if I stay at my current levels, fine too.

Take care, Annette