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 Pain complaints 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Pain complaints
My mother said today that her back and hips are hurting and she has had more pain the past couple of days. I called the nurse at the nursing home to check on what PRN pain meds she can have, in addition to the 12.5 Fentanyl patch. The nurse told me she can have three Vicodin per day PRN. They are already giving her one in the evening and one in the morning! She said she would chart it that she automatically gets the third pill around noon to see if that helps. If not, she said, the next step is probably a stronger pain patch.

I cannot understand how anyone in her condition (arthritis in her back and knees, bursitis in her hips) could still feel pain with a Fentanyl pain patch and two Vicodin per day. And I don’t understand what has changed to make her feel worse. She has depression (on medication for that, too), and I know that can be associated with pain, but if it were the depression, wouldn’t she be showing more symptoms of depression? She really hasn’t been weepy or symptomatic since she started the pain patches (had been pretty weepy beforehand). I just don’t understand this. Is pain becoming her proxy for whatever unhappiness she is having? I mean, is she perceiving something that isn't real?

As the nurse said, if Mother perceives pain, they need to treat it as real, regardless of what is going on. I just hate to see her taking all these strong meds, but I don’t know what else they can do. The nurse said she would put it in the nurses’ report that they need to be keeping closer track of her pain symptoms. This all seems so strange. Things seemed to settle down after she went on the pain patch three weeks ago, and now the pain is cycling back.

Is it possible for a LBD patient to be confused about when and how much pain s/he is having?

Julianne


Wed Nov 17, 2010 11:15 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Pain complaints
Dale complains a lot about pain as well. I suspect, as you do, that it may very well be delusional. We 'treat' the pain with a homeopathic remedy. Because it seems to work for him, I'm passing it on. The product is called 'Tremor Soothe' and he sucks on two little pills as the 'pain' goes away. It is made by Native Remedies and is available at little cost on the web. It is probably nothing very strong .... but he thinks it works, and that's all that matters.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Nov 18, 2010 12:07 am
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Post Re: Pain complaints
Thanks, Leone, I will check on that product. Because my mother is in a nursing home, everything has to be prescribed by her doctor, but the doctor is pretty open minded. Maybe I can get it approved for her to try!

Julianne


Thu Nov 18, 2010 6:43 pm
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Location: Ocala, FL
Post Re: Pain complaints
I just placed another order of Tremor-Soothe for Dale. On the Native Remedies site, you have to plug in the name 'TremorSoothe' in the search square. The product isn't pictured on the opening page.

They have a lot of different products with similar names. Don't accept anything but the little pills. They come in a small bottle of 125 tablets. The label reads: Controls shakes, tremors, twitches & muscle spasms. Dale sucks two tablets until dissolved.

As I said, I don't think they do anything ... but Dale believes in them. We keep some in the house and I carry a bottle in my purse.

I hope they work for your mother. It's 'mind over matter' .... :P

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Nov 18, 2010 8:07 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Pain complaints
"Is it possible for a LBD patient to be confused about when and how much pain s/he is having?"

I believe that this has been an issue with my dad for some time. Only he says he has no pain, although his facial expressions and gestures say otherwise. He has had a pressure sore for a year now, and it has been infected several times. Even when it got really bad a month ago he kept saying he wasn't in any pain. I think his signals have been all screwed up so what he says is not what he is actually feeling. Luckily the nurses think so too, so he's been on Fentanyl for at least 5 weeks and now morphine as needed, and that's getting more frequent. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Nov 18, 2010 8:51 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Pain complaints
Lynn, I found your comment interesting. He doesn't complain and yet you sense that he is in pain from his facial expressions and gestures. I'm impressed with your sensitivity.

It reminds me that we all handle pain in different ways. It's rare that I admit to being in pain whereas Dale often talks about his pain. When I need a pain reliever (mostly for a stiff neck), I find one. (Stress is my enemy.)

Dale will not say anything about his pain right away - but then later he gets sort of desperate - almost panicky - about the need for relief. No matter what I'm doing, he wants the pills immediately... sooner rather than later. I think his Lewy pain must be a sort of crawling sensation of his nerves rather than sharp pain like a headache. Perhaps it comes on slowly and eventually, he can't stand it.

I'm wondering if your dad is feeling that and perhaps doesn't describe it as pain. Of course, we all have different pain tolerances. Sometimes athletes welcome the pain.

Interesting subject. There is no question that Lewy confuses the issue.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Nov 18, 2010 11:49 pm
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Location: WA
Post Re: Pain complaints
Well, you almost have to assume that, since Lewy interferes with other kinds of signals, it would confuse pain signals as well. My husband used to have odd bouts of pain that MRIs and X-rays never helped to solve. The odd thing about it was that analgesics seemed to have no effect on them. His neuro believed he was experiencing muscle stiffness rather than pain since the orthos couldn't find any pathology in the area. Not even any arthritis.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Nov 19, 2010 12:55 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Pain complaints
I can only imagine that a pressure sore that is badly infected, down to the bone and getting larger must be excruciatingly painful. I think the "mixed signals" thing is the most accurate description of what's going on. The nurses at his ALF are really in tune with him, especially the new head nurse. She's really wonderful with him.
Also, his legs that have been like steel angle iron, must feel like leg cramps, but he hasn't complained of pain there either. However, his mood has gotten better now that he is on pain killers and off the Aricept.
Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Nov 19, 2010 1:24 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Pain complaints
I also believe many LBD'ers do have mixed signals with pain, my husband 8 months before he passed away fractured his T-12 according to the doctor should have been in pain and yet he never complained of pain.

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Irene Selak


Fri Nov 19, 2010 12:13 pm
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Location: SF Bay Area (Northern CA)
Post Re: Pain complaints
Julianne,

At the point when my father began experiencing lots of pain and I felt that everything I was trying and the SNF nursing were trying didn't result in any sustained improvement, I called in hospice because I believed that they were the experts in dealing with pain -- all sorts of pain, even psychic or emotional pain. Indeed, they tried multiple medications until we found a combination that worked.

You might give hospice a call.

Robin


Fri Nov 19, 2010 5:41 pm
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Post Re: Pain complaints
Thanks for all the comments and suggestions. They really help!

This afternoon, my mother phoned shortly before 5 p.m., and it's unusual for her to call me during the work day, but she said she was just having so much pain today, she didn't know what to do. I called the charge nurse, who happened to be one of the best ones at the NH. She suggested requesting a stronger pain patch, but since clinic hours were over, it would be the doctor on call, and some of them don't like prescribing narcotics for patients they haven't seen, which I understand. But I think her regular doctor would do it.

If that doesn't help, I am going to look for other resources, like hospice, next week. Also, the NH has an RN who has some kind of training in pain management, such as determining people's pain from observation even when they can't speak or express themselves. I think I will call her on Monday and ask her to reevaluate my mother.

It is just so hard to listen to my mother weep from pain, whether it is objectively real or not. She cries and cries these days. It used to be because she didn't want to be in the NH, but she never mentions that, or going home, anymore. (Maybe now she recognizes that she needs to be there.) It's all about this pain. It's bad enough that she is losing her cognitive abilities, and now this. She is just miserable, and it make me feel so sad and helpless. I'm not used to this! Being in a helping profession (Law), I am used to helping people and fixing things! Now it's my own mother who needs help, and I can't fix it. Oh well, sorry about the rant--but it's nice to blow off steam to folks who will understand.

Julianne


Sat Nov 20, 2010 1:57 am
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Location: Ocala, FL
Post Re: Pain complaints - Julianne
Julianne: Your post made me smile. Dale (J.D.) could rarely empathize. He wanted to FIX whatever it was. He is still looking for a cure or a solution for his condition. Even now, he reads medical literature constantly as if reading a legal document. (I'm not sure what he understands at this point.) He is confident that there is a miracle there somewhere.

I'm so sorry that your mother is in such pain. I'm sure that hurts you too.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Nov 20, 2010 8:04 am
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Post Re: Pain complaints
Leone, it is hard enough to have a parent with LBD--I can't imagine how much worse it must be to have one's spouse afflicted. I've read a lot of your posts and I am impressed with your devotion to Dale. He's a lucky man in that respect.

But yes, my mother's pain certainly hurts me, too. I was up late last night, reading the discussion board for perspective, and then my mother woke me up with a phone call very early this morning. She wasn't too coherent but I think she was asking about what was going to be done for her pain (follow-up from last night), so I told her we have to wait for a new order from the doctor. I'm not sure how much she understood. And of course I just want to fix this but cannot!

Thanks,

Julianne


Sat Nov 20, 2010 10:22 am
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Post Re: Pain complaints
So, here's the rest of the story (so far anyway). The doctor ordered the next stronger Fentanyl (Duragesic) patch for my mother, 25 mcg./hr. I believe, and it has really made a huge difference. Today, she told me that she no longer wakes up with pain during the night and is much more comfortable all around. And before the new pain patch could be arranged, the nurses were also giving her the PRN doses of Vicodin for which she had orders, and that was a disaster. It didn't seem to help her pain level significantly but the combination really caused huge cognitive problems. She couldn't even understand how to use the TV remote, and when her beloved Iowa Hawkeyes were playing football on TV, she said it wasn't the right team, even though she acknowledged that they had the right insignia on their helmets, etc. Wow! Now, even though she is getting twice as much Fentanyl, she is much more coherent, and pain-free. We are both so relieved!

Julianne


Mon Nov 22, 2010 2:39 am
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Location: SF Bay Area (Northern CA)
Post Re: Pain complaints
Glad to hear the Fentanyl is helping. At least now you know Vicodin isn't a good solution when cognition is required.


Mon Nov 22, 2010 4:24 am
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