Dementia and Pain

Mae2582

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.

Laura4yoga

I am so sorry you and your mom have to deal with all of this. I am not real familiar with treatments, but looks like you have a very good team of medical professionals and with you being a nurse she is in great hands! Pain in dementia clients is so very hard and different for every person! I don’t know know what stage she is in, or her history of behaviors and physical status when she was younger or prior to diagnosis. but if early to mid stages she may be candidate for some alternative medicine? Sometimes the physical pain is stemming from emotional pain or unmet needs?  I have had some caregiving training through Teepa Snow (a great dementia educator) you can look up videos and resources on her website! One of her latest conversations was the use of CBD items, might be worth a try depending on the state you live in? There are also options with care from massages, reflexology, CHIRO, acupuncture and physical therapy may help too! Good luck! You are not alone in this and you are ENOUGH, stay strong! I hope she (and you!) feels more comfort soon.

May flowers

I am sorry to hear of your mother’s situation

It is so frustrating to have pain and not be able to pinpoint the cause. I have digestive issues which not only affect my gut, but also cause pain in my joints and muscles (and other crazy symptoms because my vagus nerve is also involved). It can be hard to pin down because what I eat may not affect me until 2-3 days later. The only relief I have found is a a diet similar to low FODMAP diet, with soluble fiber only. I’m working with a PCP, GI, cardiologist and nutritionist.

I’m sure her docs have already gone down that path but I just thought I’d throw that out there as a possibility. 

terei

If you feel you have tried everything else, I would try a placebo.   Next time she complains, have ready a pill bottle of ‘new’ medication from the doctor.

‘Oh, mom, the doctor is very concerned about your comfort.  He prescribed a new VERY STRONG MEDICATION, so take only one or two.’ Tic Tacs might work or another benign pill.

The placebo effect is very strong + this might work + it cant hurt.

feudman

The suggestion in the previous post is worth a try. My DW had chronic pain issues as long as I knew her. She had multiple surgeries, mostly for cervical & lumbar stenosis. Some were merely to alleviate scar tissue, but the last time they went in for this reason, they couldn't find any. Many different pain meds were tried, but the complaints of pain continued, Within a year of her dx (PPA, language variant of FTD) her pain went away (!? psychosomatic?).

Anyone else experienced this or other issues going away?

Stuck in the middle

I feel for you.  DW has had a headache since mid-March, with intermittent mild fever.  CT, MRI, Covid tests, and a slew of blood tests yield nothing.  Tylenol and Tramadol help a little.  I don't think it's psychological because thermometers aren't affected by mood.  I doubt a placebo would help, or the Tramadol would be more effective.

Not for the first time, I don't know what more to do.

Stuck in the middle

Self hypnosis is useful in learning to ignore or even not feel chronic pain.  A certain amount of memory and focus is required to learn it, however.

mommyandme (m&m)

My mom had multiple surgeries while still cognitively healthy.  She always complained of her back, almost all she would ever talk about. That continued into her Alzheimer’s decline.  She did a lot of PT but she still focused on it relentlessly.  When we were planning her move I told her that we’d look into it with new doctors here.  After the move, we tried PT, had MRI, etc... Her neurologist even found something that the pain clinic might be able to help with.  

Long story short, she began to become increasingly depressed over not receiving relief.  I told her PCP about the pain again and the ensuing depression.  I felt terrible that her enthusiasm in moving stemmed partly from the possibility of relief.  Her PCP prescribed Cymbalta as it helps with depression and pain.  Her neurologist concurred that it’s a valuable tool.  I think it’s a miracle drug. I think it’s the most valuable med in her sea of meds.  She has a few pain meds in there too.  After getting Cymbalta on board all of her complaints ceased. No more looping on her back or telling anyone and everyone about her struggle. 

So yes, it just stopped or she forgot about it, but that coincided with the introduction of Cymbalta.  Coincidence? maybe.  We’ll never know but I’m a believer.  She’s also on a dosage that can be increased so I watch for signs of increased depression or a focus on her aches and pains.  Of course we treat her daily discomforts as they arise but those are few and far between. 

I’m sorry for the struggles that you and yours face.  

Rescue mom

Been there, and from reading all this, I may ask DH doc about anti-depressants. No drugs have helped, not even big Rx for pain) and no physical cause ever found.

But....my DH with Alzheimer’s also complained hysterically, sobbed, about pain in his back and hips. Over a year or so, he saw at least a half-dozen docs and specialists, had innumerable tests and scans. Got the strongest Rx drugs given (almost impossible now), steroid injections, PT, medical marijuana, all OTC relievers,  and many alternative methods except acupuncture.

Nothing helped. Ttests/scans showed nothing but “normal” arthritis.

Meanwhile, I could/can also see the slightest little bump, scrape or scratch—things I actually saw—ALSO caused emotional, terrible complaints of pain. Things I think most of us would shrug off, had him sob in agony and clutching the site.

I’m sorry, but I had to wonder about the hip/ back pain. Doctors just said nothing can be found, and offered the “helpers” I mentioned above, but those were no help. He’d take enough of a well known Rx painkiller to knock most out, docs said, with no effect at all.

Is it dementia or physical pain? It was horrible, nightmarish, to hear him suffering with no relief...I always had to wonder if there really Was something nobody found, and he was suffering from something that could be fixed. 

It seems to have “improved” more recently, but he goes through these spells every now and then.

He was so stoic before, never admitted to any pain. Even had what was found later to be broken ribs on one trip and kept going with no mention. Had major surgery to remove full-blown melanoma from his arm (before AD), never admitted pain and took no pills. Etc etc. 

this disease now will kill us both.

Teresag56

My mom complains of pain in her back and legs...but then when I try to give her tylenol or advil she says I am not in pain...I have noticed if I say my back hurts oranything hurts....more than likely my momis going to say her whatever hurts. Just like everything else it is minute by minute with her...Hope you find a solution and really hope your lo is not in real pain..blessings