Phantom Pain

Belle60 · August 15

I was just wondering if your loved ones with dementia experience phantom pains. My DH has been complaining of his thigh hurting for a few weeks. No visible signs of anything. I thought maybe a pulled muscle but after a few weeks it did not go away. He doesn't do anything physical activity except walk and that is only one the weekends. When it did not go away I scheduled a dr appointment. When we got there the nurse was looking at it and asked him if it was warm to the touch. Of course he said yes even though I reminded them he has dementia and at times can be very suggestible. It has not been warm to the touch. Well they sent us to the ER and after three hours of tests they found nothing. And today he is still complaining of pain. I just give a Tylenol and the heating pad. Not sure what else to do.

BPS · August 16

The only thing I would try after all you have already done is maybe stick on pain patch or arthritis cream. I think pain is a very hard thing to judge the extent of.

l7pla1w2 · August 16

Just a thought and I am definitely not a doctor. If it's not muscular and it's not connective tissue, it might be nerve inflammation. (I have sciatica due to nerve inflammation.) You can try ibuprofen, which has helped me a lot, instead of Tylenol.

Timmyd · August 16

I "suspect" that DW is complaining about phantom pain, but how can you ever be sure? What I do know for sure is that the further on this journey we travel, the more difficult it is for DW to accurately express what she is feeling.

ronda b · August 16

https://alzconnected.org/discussion/73786/phantom-pain

My DH did the same thing with his back/ribs . Went to er found nothing. Still complian of pain then he just stop.

Maru · August 16

My DH had itching…here, there,everywhere. After exhausting all possible causes, anti itch creams, gallons of Aveeno, benedryl. It all started when he started with the higher dose of Rigastigmine patch. I think that something in his brain got stuck. Finally, I thought it might be anxiety. Doctor put him on an antianxiety med daily. That took care of it.

I only tell this story because I am pretty sure that all kinds of phantom things are possible in dementia. I don't mean to sound trite but sometimes you just have to think of your loved one as a small child and deal accordingly.

Metta · August 16

You just don’t always know… After my husband came home from surgery in March, he was bedridden and almost completely unable to speak for a week. He would scream in pain and point to a hip. I didn’t know what to do.

He got stronger, but was still complaining of terrible pain, and with the aphasia, he couldn’t tell me specifically what was wrong.

After another two weeks, he peed blood clots one day. It was a kidney stone. (Also discovered he had a UTI. He had never had either before.) …So the pain was very real.

It’s just so hard to know.

terei · August 17

You can try telling him the dr prescribed a new pain med that you rub on. Get a new lotion and make a big deal of telling him ‘it is very strong so we have to be careful not to use too much’. The placebo effect can be very powerful. Make sure he cannot read anything on the lotion bottle. Use a label-less one if possible

Phantom Pain

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