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My mother has dementia and has some very vague pain that, at times, has her in tears. It comes and goes with no correlation to time of day or activity. She says it hurts all over. She's had every scan, ultrasound, and blood test done, all coming back normal. She gets bounced back and forth from her PCP to GI to Neuro, with no real solution. She's on Amitriptyline, Zoloft, Exelon patch, and lorazepam at night. Tylenol and Tramadol have no effect. I'm at my wit's end and just want her to be comfortable. I'm an RN and I feel like I'm failing her because a solution can't be found. Does anyone have any experience with a situation like this? I'm at a loss of what to do to help her.

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We were faced wth a similar dilemma with my 98 yo Mom with dementia and pain.
Aside from the primary doc we have a neurologist and palliative doctor.
Mom is on zoloft for depression, remeron for psychotic issues, remeron for sleep ( along with melatonin)..... along with tylenol 2-3 times a day.
It was only after she went on a very low dose of liquid methadone (twice a day) that the calm kicked in. Mom no longer complains of pain.
There’s an evenness to her life. She now sleeps at night, is less agitated and is pain free.

If you can, find a geriatric specialist in neurology and palliative care.
Elderly patients are unable to vocalize when they’re in pain. It may manifest itself as agitation.

The palliative doc explained that studies have proven a low daily dose for elderly frail patients has proven to be more successful than random pain medication that not only takes too long to work and is a higher dose.

I resisted the thought of so much medication but the results have proven the doctor spot on.

My heart goes out you you and Mom.
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If you can get a doctor to give her real pain meds without the stomach killing ibuprofen or the kidney killing acetaminophen, please don't hesitate to do so. Don't feel bad. She deserves pain relief. It's not a popular idea and people get scared because of the horror stories they hear about addiction but if she is able to be dosed properly she will not suffer any more.
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My wife has advanced vascular dementia, is bipolar, and has chronic back pain so she is well medicated most of the time. She is bed bound or wheelchair bound, and cannot transfer with a lift.

She cries out about pain whenever we mover her. After watching her over and over, I found that she cries out in pain with noises, her body just lightly touching part of the Hoyer. Almost any outside stimulus causes her to cry about pain. She cries out in pain not so much due to pain but as a complaint about whatever stimulus she experiences.

Today, I asked the aide to push the diaper under my wife. She waited about 30 seconds to get the Velcro tabs covered but my wife cried out as soon as she picked up the diaper.
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I found with Dementia that they feel pain more. Like a child falling down and scraping their knee. They cry and cry but as adults they wouldn't. My Mom would act like she was in pain when a Nurse used a blood pressure cuff on her.
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Isthisrealyreal May 2021
Oh my, I get blood blisters if the nurse is careless when taking my blood pressure. Your mom could have been in pain from having the cuff pinch her.
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Have you tried a placebo? Give her one when she complains, tell her it will take effect in a few minutes and see if she is still complaining about pain. It’s possible it’s "all in her mind,"
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Sounds like she is opioid dependent; the more psychotropics and narcotics on board, the increased risk for falls. Benzos with narcs are very deadly combinations that lead to confusion, increased risk for falls. The more dependent they are on narcs, the less effective they become and crying pain is an effective method to get more. Along with increased risk for falls and confusion, they will become constipated to the point of impaction; sometimes they get incarcerated or twisted bowel which requires part of the colon to be removed. Narcotics have consequences.

Psych drugs can prolong the QTc interval that leads to deadly dysthymias, torsades and death. She really needs to be monitored with more frequent EKGs. Unless she is on hospice, be aware of all the dangers of polypharmacy.
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So it sounds like she might be experiencing intermittent nerve pain. Check out gabapentin with your moms primary. Nerve pain can be excruciating and can transfer from one part of the body to another. This Med can cause dizziness and drowsiness but so can many other good drugs. she shouldn’t use alcohol or drive while taking if that is an issue. One of the regular posters said she was given it for anxiety (off label) so it might check a few different boxes for your mom.
Has your mom had shingles? Sometimes that pain can return and actually may never go away and this drug is sometimes given for that. My husband was given it for neuropathy like pain in his foot. He just takes it at night when his foot hurts.
I was given it for a bad headache that was thought to be neuralgia. I didn’t get sleepy or dizzy. My husband said he rested better when on it. so it doesn’t affect everyone the same. Neither of us took it long term. Just as needed.

I would hope to never advise anyone not to feel. Your feelings are real and valuable. and coming here is helpful. So if your wits end brought you here, then your “wits are about you.”

Keep in touch, give us feedback and you will get more tailored answers.
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CarolPeaches May 2021
There's a black box warning by the FDA on gabapentin and it does nothing for a lot of people.
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I have had chronic pain for about 30 years. I have severe osteoarthritis in my spine, which can't be alleviated by surgery. The orthopedic surgeon basically said "it sucks to be you".
Afierce years of trying to get relief, finally my RA doc tested me for fibromyalgia. I have 16 positive markers out of 18. He prescribed Cymbalta. In 3 days the severe nerve pain in my leg was gone. The "touch neuropathy" in my arms, legs, back, neck is down to about a 2 or 3 on the pain scale.
The added benefit of Cymbalta is it is an anti depressant and I have found it very beneficial helping me deal with my husband's Dementia.
Can you have your mom assessed for fibromyalgia? Hugs to you
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I'm so sorry for your mom's pain situation! I'm just going from what I have experienced myself! I'm wondering if she might have fibromyalgia! If the dementia is causing her stress, that may be a factor! If she's lost weight and she lost muscle because of it, perhaps physical therapy would help! I wish I had a definitive answer for you but I don't! I hope she's able to find something to relieve her pain! God bless you both!
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I am not a doctor and I do not understand some of medications your mom is taking, but my “gut” reaction is maybe she is on a poly-pharmacy situation. Are all these drugs useful for her? My mother was on Exelon and her Alzheimer’s became worse and she had nausea from it. Is Lorazepam necessary every night; especially after Zoloft? The other thing that I think you have is that she maybe now dependent on these drugs and if you chose to wean her off any them there might be unexpected side effects. Are you satisfied with her physician? If so, maybe you need to manage her doctor’s prescriptions; instead of the doctor “always” knows best.
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