Intractable pain, hospitalized sister in agony now three days. What should I be advocating, and how? - AgingCare.com

Intractable pain, hospitalized sister in agony now three days. What should I be advocating, and how?

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My 60-year-old sister with severe rheumatoid arthritis and congenital scoliosis, adult-onset asthma, IBS, etc. was admitted to a Cleveland Clinic hospital three days ago with severe pain. She is in soul-obliterating agony. As of last night, she had gone through a CT (cannot tolerate an MRI), and a pain management consult. She is due to see a neurosurgeon today. While in this wait mode, the nurses confirm she has been prescribed Flexeril (no effect), and Toradol (no effect). I have asked why she could not get temp opiod. Last May, she had a Morphine drip but my notes say she was "Morphine intolerant." Is there any relief? What should I be advocating and how? Also, when admitted this time, she asked me to contact her county's women's crisis line because her adult sons are emotionally abuse to her and mooch off of her. I will have no idea whether they take her case or not (privacy), because I doubt she can respond to their phone call to her. One son caused a warrant for her arrest because he failed to change her old car title to his name and incurred multiple moving violations. She was forced to pay his fines (over $1000) and her credit rating plummeted. That is a lesser concern right now, but the crisis line made clear to me that I cannot be a go-between. I am also unable to be a guardian for her.

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Seems the entire medical community has become scared crapless when it comes to prescribing opioids these days.

But when someone is in pain it’s just inhuman not to treat it - in my opinion. You just may have to become a pain-in-the-butt, demanding, squeaky wheel to get it for your sister.

If she can’t take morphine there are many alternatives - although most still fall in the same opioid family as morphine.

Fentanyl, Vicodin and Percocet all come to mind. Vicodin and Percocet both having acetaminophen which are helpful beyond the Oxycodone in the treatment of arthritis.
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needtowashhair,
OMG, I beg to differ with your study! Maybe mild, infrequent pain can be handled with the drugs you mentioned but when you've got out of control, intractable, 10 out of 10 pain, you can't kick it without narcotics (actually you are interrupting the nerve pathways that send pain messages to the brain). No amount of Motrin, Tylenol or Tramadol (I take all 3) is going to do squat for severe pain.

I have been a nurse for 39 years. Synthetic opioids (Demerol, Dilaudid, Vicodin, Percocet, etc.) have been used for decades to relieve severe pain.
I'm also a part time hospice nurse. Morphine is standard issue for people dying in pain. I'm afraid I be laughed out of the house if I tried to give my dying patient a Tylenol.

I'm also a fan of holistic medicine. It's great to use natural products to aid in our health. Often times physical therapy can relieve some pain, as can music therapy, talk therapy, massage, heat-cold, plant poltices, etc..

The problem with NOT getting the pain managed is that it spirals out of control. Then, it's very difficult to get it back under control again. I actually experienced this after my surgery. My doctor wanted me to have a BM on post-op day #1. (Unthinkable and not a realistic expectation!) So, I thought that since narcotics (that I was prescribed) can constipate you, I would only take the Motrin until I "went".  Thirty-six hours later I called the office crying in pain. I couldn't "go" and I was in excruciating pain. The nurse told me to forget about "going" and take some pain medicine. Within 3 hours of taking the medicine, my pain was under control, I could relax and I "went". (Sorry if TMI.) I'm trying to make a point.

My son is a heroin addict, so I'm unfortunately familiar with over prescribed narcotics. Yes, the pendulum has swung the other way. Now, you're LUCKY to get a narcotic prescribed post surgery, car accident or other huge life event that causes great pain. Doctors are scared and don't prescribe, but to our detriment. WE suffer because they have been too liberal passing them out like candy THEN realizing we have an opiod epidemic on our hands.

Flexeril is a muscle relaxant. It is indirectly used for pain IF it's muscle related. Toradol is a non-steroidal anti inflammatory (so is Motrin). This is not going to be adequate for severe pain.

I hate to mention I have not heard great things about Cleveland Clinic. Maybe the neurologist will prescribe something that will work!
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Midkid, ya' got me started.

In the 39 years I've been a nurse, I've seen great medical advances. We can look into the body with many different machines, cure diseases that were once fatal, treat diseases to keep them under control for a better quality of life and have seen vast strides in prevention of diseases.

The one area that is lacking is pain control. We really haven't made good progress since the introduction of opiates many, many years ago.

Case in point; My mother showed dementia symptoms about 6 years ago. Also, around that time, she started having headaches. (mother was a bit of a hypochondriac throughout her life.) No medications helped relieve her pain. She had many tests but nothing showed up. She was sent to a "pain clinic" and they gave her Morphine 7.5 mg. to take twice a day. That should have relieved ANY pain but it did not help. Now, wouldn't you ask yourself, if Morphine doesn't work, then maybe it's not a "pain" as we know it? I suggested she quit taking it.
A couple years later with the dementia progressing, she saw a new doc who ordered a battery of tests. Nothing was identified as a cause of her pain. In doing some research on Alzheimer's, I found it can cause sounds and muffled voices in the head. I have to conclude that mother's "headache" is brain noise. Unfortunately, there is no help for her.

I don't think that doctors have enough time in a 15 min. visit to really assess pain. I know there are a lot of scammers-I've had them come in as patients- but the majority of patients truly have pain. I don't think doctors are skilled in "assessing" pain, like taking everything into consideration such as depression, apprehension/anxiety, family dynamics, etc. They don't have the time in this era of "cattle herding".

We need to take the "whole" patient into account when assessing their condition. We need to explore other means of relieving chronic pain. We need to develop new, non- addicting medications that can relieve us of our suffering.

I have arthritis in my neck and back problems. I take Motrin 600 or 800 mg.. If that doesn't kick it, I go to Tramadol. Usually that will do it. On the rare occasion it doesn't, I will resort to a narcotic pain pill. Usually, by then, my neck is locked in place, my back is spasming and I'll take anything. I get shots every few months and my pain doc does this procedure called "needling". I'm guessing, by the way it feels, he puts the needle in and twists it around. Hurts like hell but it took the pain away for a few months.

We need to enter the 21st century for effective pain medication. We are at a disadvantage with big pharma. Hopefully there will be a breakthrough soon.

Sorry, kinda' got carried away. I just don't know WHERE these dumb studies come from. I think it's to brainwash us to change our behavior (taking narcotics). Wouldn't be the first time a government did that to its people.
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Why not call APS, and hook them up with the hospital social worker. Then when your sister is ready to be discharged at least she'll already be on the radar. You can tell them exactly what she asked you to tell the crisis line. And they should be able to come to her in person, no?
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When my hubby had a liver transplant and then a horrible post op infection some weeks afterwards, he was in incredible pain. He was actually crying and this man cries over NOTHING...I had to become a major PITA to get the drs to listen to me. Seriously, I was on my knees to one dr, begging him to please relieve the pain!! You make enough noise and bug enough people, you will get their attention. (Not my normal demeanor at all so it was hard to be this way). BUT--they began to really look at him and see he was NOT drug seeking but in intractable pain. Once they finally got it under control and got him as comfortable as he could be, the problem never occurred again. He was in the hosp. for 12 days after the transplant and 21 days for the infection. When he got home, I made sure we had his pain under control all the time. He is not an addict, by any means.
I personally feel that the pendulum over opioid abuse has swung waaaay too far to the left---you can't get what you need to control your pain, your QOL just goes down the tubes. WITH a correct pain reliever, you are able to get up, move around and HEAL. W/O, hubby wouldn't even get out of bed.

Everyone is different. Everyone experiences pain differently. Unfortunately, drs ARE terrified to prescribe ANYTHING. I hope this soon changes back to them being caring of the PATIENT not terrified they're going to lose their licenses!!
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Do you have your notes from what worked last year? She was on a three med combo that helped ( just checked your old posts).

I don't think right now is the time to call the crisis line if she can't talk to them.
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With my mom, I had better luck with University Hospital (Ahuja) than Cleveland Clinic. But one thing I learned was to go through the Social Work Department for everything. APS May suggest a restraining order against the sons and will probably help you get one.
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Sue 1957--
I TOTALLY agree with your take on pain relievers!!!!! I can't take Ibuprofen anymore, Tylenol alone is a joke. Can't take Tramadol and so I am left with a stingy scrip for Tylenol #3 that barely cuts through my chronic back pain/arthritis.

Having said how hard it is for me to get my dr to let me have some Tylenol #3's---my "neighborhood dug dealer" is doing GREAT business. He seems to have no problem getting the "good stuff". I'd NEVER EVER go to him for pain pills---but I know people who do. B/C their own docs won't treat chronic pain.

If I can get on top of the pain on bad days and stay on top, I take less. I think that's the norm. It gets out of hand and I'm useless. And I know I am not alone.
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I have just been through an experience where I struggled with the choice between reporting concerns vs. not meddling in things that were not my business and that I couldn't know everything about, so I sympathise - though I wouldn't quite say I feared having blood on my hands! Just making myself unpopular... :/

You have to report facts. Stick to facts. Your sister's property has been sabotaged. Her home has been made difficult for her to live in safely. She has reported a near-fall. Log all of these things, and pass them on. It's all grist to APS's mill, it's confidential information, and if they don't feel certain things are important they won't worry about them and there's still no harm done. You can't go wrong.
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50schild,

I think you need to call APS and the Hospital SW and let them know what she came home to. It is elder abuse pure and simple and yes, she is caught in the cycle of abuse.

The fact that it is not safe for her to get to the bathroom in her home indicates it is time for a move.

I do not understand how you can equate calling APS to having blood on your hands? Isn't it the opposite, if you do not call and something bad happens you will feel responsible as you knew there was a problem.

How is getting help and safety creating more chaos? It will create change, and yes, her sons will not be happy and likely will act out, but she will be physically and emotionally safe.
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