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Chronic Opioid Use

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Old 10-08-2018, 05:12 PM   #1
6thCranialNerve
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Default Chronic Opioid Use

I take opioids for Chemo-Neuropathy. I take Gabapentin 800mg. TID. My family has shamed me for taking opioids. I've signed a contract with my PCP and take a pee test every quarter to show I am indeed using them (vs selling). I use a great lotion Penetrex which has Frankincense. I use CBD oil. I try to limit caffeine and mostly drink H20. When I try to stop taking the opioids, my feet (especially) and hands burn. It becomes really bad. I'm a nurse with over 40yrs. so I realize pain is subjective. My PCP believes me; but I can't get past the family shame; especially my daughter. I've had acupuncture before and it did nothing. I am on disability and cannot afford integrative medicine. I would love to be able to try a barometric pressure chamber.

I developed double vision last January and have since been diagnosed with Multiple Myeloma. I am praying that maybe that will help. Otherwise, I must continue with the opioids.

Any suggestions?
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Old 10-09-2018, 12:54 AM   #2
DejaVu
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It sounds like you may need to continue with the opioids?

I have needed morphine for the past 15 years for severe neuropathy, Psoriatic Arthritis and RSD. I cannot give it up based upon any shaming, as I would suffer dire consequences. That said, I am currently trying to reduce the dosage and reduce the risk of respiratory depression.

If opioids work and are a viable option, why not stay on them?
What else can you do? This is about your own comfort.

I also use Penetrex. I LOVE it!

My best to you!

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Old 10-09-2018, 10:24 AM   #3
6thCranialNerve
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Originally Posted by DejaVu View Post
It sounds like you may need to continue with the opioids?

I have needed morphine for the past 15 years for severe neuropathy, Psoriatic Arthritis and RSD. I cannot give it up based upon any shaming, as I would suffer dire consequences. That said, I am currently trying to reduce the dosage and reduce the risk of respiratory depression.

If opioids work and are a viable option, why not stay on them?
What else can you do? This is about your own comfort.

I also use Penetrex. I LOVE it!

My best to you!

DejaVu
Thank-you DejaVu! It is a curious thing, perspective. You can never give that to another.
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Old 02-01-2019, 10:45 PM   #4
caroline2
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OP: I have advanced OA in both feet and ankle (right leg mostly) , right side of body is messed up with issues due to OA. I find that when I think of it, I massage my right foot for sure with DMSO and one can buy it already somewhat diluted or can work on it themselves. I also add some essential oils to my DMSO and it's good for the burning in my leg and foot. Frankensense is great and I add it to the DMSO too.

If you are unfamiliar with DMSO, there is a lot of info online and even a yahoo group dedicated to DMSO. Rubbing my foot and ankle helps too with circulation issues there.
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Old 02-08-2019, 10:01 AM   #5
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My pain mgt. doc said to me, one day, "You have CRPS. Opiods are going to be a part of your life for the rest of your life. Get over it."
That was it. That settled it in my mind....for me. From that day and until now, I don't do the "back and forth" in my head or with other people anymore. Period. Noone lives with the pain you are in but you. Allow others to sabotage the relief you get from your MEDICINE at your own peril, honestly.

I imagine if you close the subject with your family members, it will get closed, but it's up to you do to that.

This "war on opiates" was and is an irresponsible campaign, especially in the manner and context with which it is being presented. I am able to tell, right off the bat, who our more intelligent people (even doctors) are from how they discuss this. I argued with an Ortho surgeon (more for his benefit than mine, and in the end, I concluded that he was relatively shallow thinking, because he is sold out to the idea that noone should use opiates more than three days, period). My points were numerous, but most of all, this "campaign" failed to offer a suitable alternative BEFORE being waged. It also distorts the facts (pain patients are NOT the ones making up the numbers that make this so much of an epidemic). Also, for those of us living with severe chronic pain, without responsible treatment, many are ending their lives....is it worth it to take away their only resource and provide no real alternative "just in case" they overdose? NO! Its smart to give patients who really take enough opiates to worry about the anti overdose med, available at pharmacies without a prescription, and leave it at that! (That medication is called, I think, Narco, or something like that, but it's on every ambulance and should be in every home where there is even a potential for overdose, with pain patients).

I saw a doctor who was extremely conservative about pain medication and over a 2 year period, I got SO overwhelmed with living in the degree of pain I was living in, that I gradually became suicidal. I was dealing with severe pain, unchecked, and no matter what, one hour at a time, 24 hours a day, it got to the point that I could no longer take it. I then started daydreaming about dying, praying for the Lord to take me off this planet (I am a Christian), and eventually, when He wouldn't, and I got very close to doing something about it myself, I realized, I had to make a change. I just couldn't tolerate the idea that I was going to "off" myself, and talking to someone (ie: Therapist) was not going to deal with the root problem, which was, my pain levels were intolerable for me to co-exist with, and change had to take place.

I contacted my insurance company and was assigned a case worker. We got me in with another pain management doctor who gave me a prescription for the pain levels I was having that was much more suitable, and literally on the first day I took them, I realized that just underneath the surface, there was a type of hysteria going on with me. I immediately felt peaceful...and calmed, and with a clearer head, I resolved to never allow another doctor to have that kind of power over me again. I still want to take this matter up with the medical board and present that this doctor willfully watched me disintegrate as a person over a period of two years and with no compassion or batting of the eye, he allowed it to happen. Another thing that happened in tandem was that my CRPS moved to many new places on my body. Was it worth it? NO!

I have strong feelings after what I've lived through, and it was primarily because I allowed it to happen and didn't advocate for myself. It's all fine and good for others to share their opinion with you, but they aren't walking in your shoes, feeling what you feel, and frankly, what you believe you need to do for yourself is NOT their decision to make.
Set up healthier boundaries with others when it comes to this is my feelings. Others are allowed to tell me their opinion on things, and it is right for me to hear them out, but I reserve the right to make decisions for myself, and that's where the boundary is between myself and others.....even professionals in the field of medicine.
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Old 03-18-2019, 07:28 PM   #6
AtticusFalcon
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Quote:
Originally Posted by 6thCranialNerve View Post
I take opioids for Chemo-Neuropathy. I take Gabapentin 800mg. TID. My family has shamed me for taking opioids. I've signed a contract with my PCP and take a pee test every quarter to show I am indeed using them (vs selling). I use a great lotion Penetrex which has Frankincense. I use CBD oil. I try to limit caffeine and mostly drink H20. When I try to stop taking the opioids, my feet (especially) and hands burn. It becomes really bad. I'm a nurse with over 40yrs. so I realize pain is subjective. My PCP believes me; but I can't get past the family shame; especially my daughter. I've had acupuncture before and it did nothing. I am on disability and cannot afford integrative medicine. I would love to be able to try a barometric pressure chamber.

I developed double vision last January and have since been diagnosed with Multiple Myeloma. I am praying that maybe that will help. Otherwise, I must continue with the opioids.

Any suggestions?
I had bilateral compression of the lateral femoral cutaneous nerve for YEARS and after oral opioids didn't provide relief, a neurologist prescribed a fentanyl patch.

It worked great in treating the pain, which, luckily, resolved on its own (after YEARS).

BUT, over the years I was on the patch, my creatinine levels were elevated.

An endocrinologist later told me that the patch was impairing my kidney function. So I got off it. Ironically, I had seen a nephrologist for the elevated creatinine and didn't think it was the cause.

Botton line -- as it was for me, within months of getting off the patch my creatinine went down from 1.4 to .85 (which is great) and my EGFR went from 88 to 112 (which is great). In hindsight, I got very lucky. My good friend - an ER doctor -- told me as such, since once the kidneys go, there's no coming back. Kidneys - -unlike the liver -- don't regenerate. And kidney impairment is one of the LESS know risks of chronic opiod use. Pain sucks for sure, there's no doubt about it -- and most treatment for chronic pain failed me (including Gabapentin--which made me gain weight and increased the pressure on my nerves) -- but living with pain, I suppose, beats living with chronic kidney disease.
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