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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.

My 91 year old mom who has dementia will complain of pain somewhere. By the time I get back with pain meds she says “what? I’m not hurting anywhere “. Go figure. And if something seems serious enough to contact the Doctor I now wait a couple days while keeping close watch to see if she stops complaining. Most times she does. The Dementia Caregiver life definitely requires discernment capabilities that maybe even your medical knowledge does not prepare you for in your personal relationship with your mom. ❤️
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Reply to ForCladdie
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My mother (83)fell across the edge of the bathtub and broke three ribs . Even though they have healed, she has become fixated with this area...stiil she rolls down the top of her pants which are 2 sizes too big so that the waistband doesn't touch it. When asked where to put her lidocaine patch...it isn't anywhere near the fracture site.
She wears the same turquoise pj bottoms day after day because they are loose and comfortable yo her. With the lack of communication skills, it is very hard to determine is this real pain..or does she just want some attention.
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Reply to Lakemama
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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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Reply to purplebadger
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Imho, my late mother would complain of "bad pain," though the emergency room physician could not determine the cause, nor could her primary care physician. You are not failing your mother.
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Reply to Llamalover47
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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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Reply to garylee
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Hospice gave my mom a small bottle of morphine but I never know at what point she would need it. Most times, Tylenol works.
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Reply to LoveLea
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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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Reply to Maple3044
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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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Reply to SamTheManager
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Not with Alzheimer's but my family member has bipolar and was brain-damaged by a hospital procedure. His tests reveal reasons for his pain but he feels he never gets relief. I am investigating ordering gene tests to determine whether he absorbs pain medication well or not and which families of medications are better for him than others. Not sure what the outcome will be but we are disparate to get him some better relief.

Also, I have simple arthritis everywhere from multiple car accidents. Because I am less tolerant of pain, I feel in pain ALL the time. It would be hard to believe that at your mom's age, she might also have some arthritis and maybe she's more sensitive to pain? If so, it's not in her head.
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Reply to CarolPeaches
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Feeling like you're failing is common, but doubly so in your care, since you are a nurse and by profession your job is to help others and in being unable to source the pain or relieve it, it leaves you feeling even more like a failure!

YOU are making the attempts to get to the bottom of the issue(s), so it isn't you who is failing. It is very difficult to determine what, if anything, is causing pain in those with dementia.

My mother suddenly started complaining a lot about leg/knee pain. I took her to the doc first, who just prescribed a lot of Extra Strength Tylenol AND ibuprofen. It really did nothing. I took her to the ER. During intake, she told the triage nurse there was nothing wrong. She stood and walked to the scale herself, despite refusing to walk before getting there. Of course then you look like an overprotective idiot! FOUR hours of moaning and crying, massaging her leg and complaining of pain later, we'd had a check for clots (negative) and not much else. I wasn't too happy they didn't do Xrays - most likely because she'd had then several months before (maybe 9 months?) They gave her something (not narcotic, I don't recall now what, but it wasn't much more than the Tylenol or ibuprofen.) They asked to see her use the bathroom, but she couldn't stand/walk unassisted (took 2 men to help her) and couldn't even stand long enough to let me help pull her pants back on. They discharged her anyway, despite inability to really do anything herself or resolve the pain issue.

One staff member was unhappy with me not pursuing this further, such as take her to a walk-in clinic. Without her records, with dementia and so forth, exactly what is that going to achieve? She really tried hard to make me feel less than helpful to my mother (Do you really like seeing her in pain? What a jerk!)

Anyway, I chose to take her to an orthopedic doctor. First appt was weeks away and I managed to get them to move it up some. It was still at least a week or more away and by then there were no more complaints of pain. I took her anyway, because I was aware of how many times before dementia she had said she needed to have her knees "done", but never pursued it (she lived alone, no real help from us, as she was doing fine.) Anyway, I told him all this (again, NO pain evident since those few days) and he ordered Xrays. On review he told me that were she 20 years younger (she was about 94 then), we'd be talking surgery. Her knees were basically bone on bone. The 20# she gained after moving to MC likely wasn't helping either! In addition, she preferred to sit and read the paper, magazines, sales flyers, so not a lot of active movement. She was still self-mobile at that point - no walker. I requested a cortisone shot, more as a preventative than anything. He agreed and mom initially balked at "needle", but didn't flinch or cry out when it was done. She's also one who would complain loudly about the BP cuff being painful.

Although she has indicated she "hurts all over", if you can get her sitting comfortably and then ask where does it hurt the most, the least, etc., maybe you can narrow it down. Sometimes if pain is intense enough, we tense up and that can make it seem like it hurts everywhere. Before I could finally get the right doctor to figure out my pain WAS a cervical disk (5+ YEARS!), I had to be very careful about what I did, how I would sit AND if pain started, catch it ASAP, otherwise I would be non-functional for hours or longer.

As an RN, I would guess you've had the UTI check done (preferably a culture) and blood work (to rule out an infection elsewhere.) If not, I would get these done to rule out any infection. When I first joined the forum, I was puzzled by all the UTI test suggestions.... until mom had her first UTI in MC. Oh boy! Another member ruled that out, but discovered an infection in the mouth caused her mother's odd behavior/changes. Once treated, all was good again!

Hope they find something, either a cause or a solution.
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Reply to disgustedtoo
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CarolPeaches May 25, 2021
There's a major war on prescription opioids by the DEA which is why many doctors will not prescribe medications that actually work for pain. But for sure, acetameniphen can damage the kidneys. No one should get more than 1,500mg a day but I've seen doctors try and give over 3,000mg to someone who already has kidney disease. Their ignorance is overwhelming.
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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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Reply to 97yroldmom
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CarolPeaches May 25, 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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Mae - - a poster on this topic has stated that your mom is 70 years old. I don't find that anywhere on this page or in your bio. Perhaps you mentioned it on some other topic, but there is no way for me to look up your other posts, that I know of anyway...

Please read up on Polymyalgia Rheumatica. If you think it may fit, have the doctors screen her for it. Corticosteroids, specifically prednisone, can really help with that kind of pain. I know the typical protocol is to start a bit higher then taper down to see if the condition resolves. If that doesn't work, the next stage is to try cycling the steroids to prevent long-term side effects. But if doing that keeps a pt in a cycle of pain, not pain, pain, not pain, etc etc, you won't find that satisfactory.

I don't know your mom's type or stage of dementia or how much more time it's thought she has. But for an elder with chronic pain from PR, a continual low-dose protocol is a better solution to keep them functioning with less pain and a better quality of life for the time they have left.

As an RN, I know you already know what I'm talking about, and that you'll do your appropriate research. Best wishes...
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Reply to CarolLynn
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97yroldmom May 25, 2021
Under caring for

I am caring for my mother Mom, who is 70 years old, living at home with alzheimer's / dementia.
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Her vague pain may also be related to depression. Many seniors have depression and depression is also known to cause pain issues. Consider that some types of dementia also rob the sufferer of vocabulary. She may actually may be feeling distressed or anxious. Consider a consult to see a geriatric psychiatrist.
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Reply to Taarna
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Have you considered reducing the amount or type of drugs? There are a lot of side effects for just one of those you listed. I've got an 86 yr old, stage 2 dementia off most drugs by replacing with high CBD and low THC formula soft gels made by Care by Design. I know its uncomfortable testing meds and dosages but after multiple care providers told me about benefits of CBD I decided to try (Mom was fully bananas on pain meds). I tried 30:1 and ended with 18:1. Mom not even complaining about her arthritis anymore.
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Reply to luaneZ
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Dear Mae2582,
I am writing from the patients point of view. When I read about the experiences you are having with your mother, it sounded very familiar to me. I complained about pain throughout my life. My mother was DON at a Catholic Skilled Nursing Facility for about 15 yrs. I saw number of different doctors Orthopods, Neurologists and my PCP. All of them said, they couldn't find any cause for pain. Going forward from childhood, until I was in early 40's. when I made an appointment at a nationally known Medical Center having an EMG and Nerve velocity test. The doctor doing the test was a Fellow who told me she'd be opening a practice in the town I lived in the near future. She wrote down my contact info and called me when she had details she could share with me regarding scheduling appointments. She's been my Neurologist going on 16 yrs.
She told me I was experiencing Neuropathy. I was prescribed Lyrica and I've been on it ever since. within two weeks, my pain level went from a 6-7 down to 2-3 which has been manageable. I've considered it a Golden Bullet in my life.
I was also told by her that I had a form of Muscular Dystrophy. These two pieces of medical diagnosis, have allowed me to enjoy life more than I thought I would.
I just wanted to share this story as it took two thirds of my life to get the diagnosis. I don't know if your mother underwent any tests for Neuropathy, if not, I think it might be worth walking down that path.
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Reply to jfbctc
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i can't answer personally from experience with my father, but i do know that sometimes when he would be moved he would scream........and I mean scream so not sure if its because when they start losing their muscle tone and it gets "stiff" (don't know how to spell the other word), once they are moved it could be very painful. kinda like (I guess) if you would have surgery on an arm and it was casted for weeks and then you have to start therapy to slowly "unwind/unbound" the stiffness.........it hurts. i guess kinda like stretching a rubber band beyond its stretch point it would hurt like the dickens. It could also be with the dementia in the brain sending mixed signals of the pain center making it have pain when nothing is wrong. I sure wish you luck, but it sounds like she is on lots of meds that might be contradicting each other.
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Reply to wolflover451
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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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Reply to cetude
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My husband finds great relief with Tramadol and Aleve. He calls it a miracle. If your Mom can take Aleve and her doctor okays it, maybe this would help her?
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cetude May 25, 2021
Aleve can burn a hole right in an elderly person's stomach, cause bleeding; increases risk of heart attacks and stroke and can definitely damage the kidneys. Wounds will heal a lot slower due to bleeding issues.

https://www.goodrx.com/aleve/side-effects

Aleve can also cause kidney damage
https://www.goodrx.com/blog/10-worst-medications-for-your-kidneys/#:~:text=NSAIDS%2C%20or%20nonsteroidal%20anti-inflammatory,because%20of%20their%20widespread%20use.
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NO your. Not falling her, that is part of dementia. Pain is. What happens when you when have it. I know I have pain all the time. No pain pills is going to go. Just keep her mind off of it. Try music .they she likes. Or try reading to her. Anything that.she likes. I'm 57 years old .and it runs on my dad side of the family. And I walk with a quid cane.
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Reply to Dskil57
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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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Reply to Ricky6
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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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Reply to Lee10075
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I don't know about the dementia element, but some autoimmune disorders (which usually go undiagnosed because of the difficulty identifying them) cause extreme pain.
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Reply to marymary2
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Sorry to hear this . What environment is your mom in ? Yes we have experienced something similar . My dad was only diagnosed in the last year with double dementia ( vascular and Alzheimer’s) . He is severe late stage , it has progressed like a wildfire in the last year . Prior to that for about 2 years before any signs of dementia he had uncontrolled pain , lots and lots of test , diagnosis idiopathic neuropathy . Nothing helped, no med touched it . They reduced meds recently due to side effects and funny enough Now neuropathy lessened but every activity hurts, a day before BM’s cause intestinal pain .He has become wheel chair bound due to regulations of hospital and not being allowed to ambulate due to lack of staff. Even constant sitting on chair hurts . This immobility has caused severe pain . The best remedy I found was believe it or not , massage and pain cream, warm packs, or cold at times . Perhaps the massage is helping break pain cycle or increase a bit of circulation. I think he is achy from arthritis as well and it makes everything hurt . I found being able to move him in tiny movements helped . Problem is there isn’t staffing to do this regularly , now I’m locked out due to Covid .
Sorry your mom is going through this . My dad find listening to gently music helpful when he is in physical distress . Hope you can find something to help give her a bit of relief .
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Reply to nikkimgs
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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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Reply to Frances73
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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 21, 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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Your mom is only 70 years old. What level of dementia does she have? Thanks for the additional information.
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