My mother has extreme pain in her abdominal area (probably related to constipation, although sometimes she feels it is due to her inability to urinate). We have had a lot of trouble figuring out exactly what is causing the pain. We have done just about every test possible and have essentially ruled out the usual culprits. Has anyone had a loved one experience this sort of pain? If so - has anyone found something that helps? My mother is in so much pain. Sometimes only for a few hours and sometimes for 20 or so hours. The folks at the Assisted Living Facility keep telling us that she is doing this for attention. Given that she has always been a person who is pre-occupied with herself, I can see how they might think this. However, it seems to me that this typically starts about a half hour before her medications. Sometimes it goes away after the meds "kick in" and sometimes it doesn't. She does have extreme anxiety over what is going to happen to her around medication time and that no doubt contributes to a more extreme episode, but the episodes themselves seem physical to me. If we could figure this one out, I think that we could survive the rest of the LBD symptoms (with a lot of help and support). The abdominal pain, though, is causing a great deal of distress for everyone in the family and is at the heart of her behavioral problems that are resulting in various Assisted Living placements not working out.

Thanks for your thoughts - Liz

How much water does she take in daily? Is she hydrating enough? Is anyone monitoring it? My mother forgets to drink and I just asked the nursing director to make sure someone give her water on a regular basis and makes sure she drinks. The diagnosis: constipation with severe gas. Once she relieves herself, she's fine.

Kate

There is a lot of discussion on this forum about our LOs having pain when there does not appear to be a reason for it, and the reverse. When there is something that would cause a healthy person to have pain, our LOs may not feel it at all.
So, you may be in a complicated situation where there does not appear to be a physical basis for pain, in other words, "it may be in her head." Then, it could be caused by any no. of physical reasons. What sorts of tests have her drs. run to figure this out? What do they think it could be caused by? Has she had MRIs or other imaging done that might show something like a tumor? Lynn

'her inability to urinate'? Does she suffer from urine retention? This happened to my husband in 2008 and he has had an indwelling catheter ever since. It's from a 'neurogenic bladder', not uncommon with PD and LBD. It caused him terrible pain. Unless your mother has been tested by a urologist I wouldn't just accept that she is 'doing it for attention'.

Liz,
The best thing for you to do is consult with your Mom's doctor so things can be ruled out, it could have to do with urine retention, not enough water intake or just a plain old infection but without knowing its really hard to guess!

Good luck with finding answers!

Has she seen a GI specialist? You might ask specifically about gastroparesis. This is fairly common in some of the parkinsonism disorders.

Another sort of MD to take her to see would be a neurologist who specializes in pain.

Thanks, Robin! I'm going to look into this for my mom, too. Maybe that'll explain her pain.

Kate

Hello Everyone:

Thanks for your thoughts. I have actually been to every specialist and had all tests that I know of ran. She has seen a GI fellow and we have discussed the pain repeatedly with psychiatrists, neurologists, and GPs. We have had scans of the insides and outsides of her organs done and there just seems to be nothing. I am wondering about the phantom pain idea. That is an interesting possibility (perhaps brought on by anxiety). However, I have no idea how to help her if it is phantom pain. It is her feeling that life is not worth living if her quality of life is going to be like this (sigh). I am feeling a lot of pressure from her to "fix" it. Anyway - thank you all so much for your insights.

Liz

Has anyone tried narcotic analgesics to see if the 'pain' is relieved?

Pain is pain and, IMHO, ought to be treated whether it is phantom or from an organic cause.

Hi -
Narcotics? Can LBD patients take narcotics? My mother was addicted to benzodiazepines and it took us a long time to get her off of them. She was having even worse psychotic episodes while she was on them (but she was absolutely convinced that they solved all of her problems - my sense was that she was still in pain, but didn't remember it later). She broke her ribs when she was in her 40s and had a dependency problem with the narcotics. At that point my father was helping with her care and simply cut her off at a certain point. She has tons of anxiety and she thinks that medicine will fix things for her. Since she is in assisted living, though, narcotics might work since the facility controls the medications. That is certainly an interesting idea and I will discuss that with her neurologist. Thanks

Liz

My dad was on a lot of morphine in his last couple of months and was in terrible pain when the morphine wore off. Even trying to hold his hand nearly put him in orbit. Everything hurt, so even when he just needed a change, they gave him morphine so that rolling him over, cleaning him up and changing him didn't cause him undo pain.

My observation was that the ability to feel, or not to feel pain, was all screwed up. My dad had a pressure sore down to the bone for about a year before he died, but it never hurt him till his last couple of months. He would get angry and frustrated and slam the backs of his hands into things and tear his very thin skin open. The backs of his hands looked like hamburger almost all the time but he never complained of pain there either. Then in his last few months everything hurt all the time, excruciatingly so. I've heard similar observations by other CGs whose LOs have neurological diseases. It can be so mysterious and frustrating to try to help. Lynn

Liz,
Is there a pain specialist near your mother?
Robin

I was just thinking that trying morphine or another strong analgesic--even just codeine--might be a diagnostic tool. If it eased the pain, it might show there was some cause. It doesn't imply that she needs to stay on it.

My husband had unexplained hip pain several years ago that MRIs and X-rays could not diagnose. It was not severe, though.

unexplained pain….

I could write a book on this one…

I get hip pain so bad that I can't stand up….I have had three episodes where I couldn't stand to be touched or have any weight on it….

(that is why I bought me a scooter…)

I get unexplained chest pains….for many years….really bad….really, really bad...

have had every heart and digestive test and scan imaginable…..nothing…even angiogram….(clear arteries)

I was given amitrytiplene by a gastro doc four years ago…..(I blame this for pushing me off the cliff) and starting my cognitive decline….

I get cold….hot….numb…..pins and needles….in most parts of my body…..some don't go away….left side of face since 2004 for instance….

….I have often thought….If I was having a heart attack…would I think I was? I am used to trying to outwait pain to see if it is real or not…..a dilemma