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 Pain 
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Joined: Tue Aug 03, 2010 10:00 pm
Posts: 1
Post Pain
I'm not sure what stage my father is in with LBD, but he has been diagnosed for 18 months now and had symptoms prior to that. He falls frequently, uses a motorized wheelchair and says he has tremendous pain on a daily basis. He has a history of back surgeries, so he says the only thing "wrong" with him is that his back is in bad shape. The doctor has prescribed some pain medication, but dad says it doesn't help. My question is this...could there be pain associated with the disease itself? Could my dad be enjoying the pain medication and is just wanting a stronger dose? Could the disease be exacerbating his original back problem? Any thoughts anyone has would be much appreciated!


Mon Sep 27, 2010 7:01 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Pain
Frank was dx 5 yrs ago and has never commented about any type of pain.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Sep 27, 2010 7:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: Pain
Pain seems to be another one of those very individual things. My dad will say he doesn't have any pain even when it is obvious that he is in terrible pain, which he has been for the past 4 days. I wonder if it's kind of the opposite thing with your LO where maybe there really isn't any physical reason for pain but his brain is working in such a way that he thinks he is feeling pain.
However, if it were my LO I'd take him to the back dr. and see if there is disk compression, fracture or some other physical reason for the pain. If the back dr. does testing and doesn't find anything, maybe take him for a full check up to see if there is some other physical source for the pain. Has he been to PT for an assessment and manipulation/exercise for pain? I find PTs do a very thorough job of figuring out exactly what is going on with me that's causing pain and then what to do about it. Hope this helps. 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.


Mon Sep 27, 2010 7:34 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain
Several years ago my husband, who had already been diagnosed, went through a period of left hip/thigh pain. Neither acetominophen nor NSAIDs helped. Although he complained of it, he didn't appear to be in any discomfort, however. He had X-rays, MRIs, everything was negative in both hip and thigh and examined both by ortho and neuro specialists. Not even any arthritis was seen and his bone density was excellent for his age. His neurologist suggested it might be muscle stiffness related to PD. For whatever reason, it seemed to disappear within a few months and never recurred.

A few years before his dx he had problems with his lower back, again no pathology was seen. He was sent to PT and they could not do anything with him because he was so stiff so he didn't have PT at that time. This should have been an early cue that something [PD?] was going on even then. And looking back, he was having a lot of trouble with executive function about the same time.

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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.


Mon Sep 27, 2010 7:40 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pain
There are several types of pain that can be part of Lewy body diseases. (I've posted some notes here from a webinar a couple of years ago where one speaker addressed these types of pain in PD.) Of course there are many non-LBD causes of pain as well.

I suggest you get an appointment with your father to see a pain specialist.


Mon Sep 27, 2010 9:09 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Pain
There are also some cases that people with LBD don't feel pain that they should have, my husband was a perfect example he fractured his back and complained of no pain, at the time the Dr. said he should be in pain!

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Irene Selak


Mon Sep 27, 2010 9:31 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Pain
Add on to my previous post:
Yet there were times he complained of pain and we never found a reason for the pain!

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Irene Selak


Mon Sep 27, 2010 9:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Pain
I guess these anomalies are the result of signals not getting through, just like the other symptoms, huh?

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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.


Mon Sep 27, 2010 9:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Pain
Pat,
That would be my take on it, the wires are crossed and they sometimes just don't get the correct signals!

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Irene Selak


Mon Sep 27, 2010 9:38 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Pain
T,here is also the possibility that the pain has no direct link to LBD. If has a history of back surgery, and multiple surgeries, he could be suffering from neuropathy, which is not directly linked to dementia or Parkinsons. I received a diagnosis of neuropathy when I saw a neurologist about my tremors. After a number of tests. I was told that the tremors, numbness and pain in my arms come from neuropathy; that I was not in the early stages of dementia. If this is what is causing your father's pain, all you can do is manage it with meds and therapy.

Good luck!

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Sep 27, 2010 10:47 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Pain
Hi, regarding LBD and pain.....I'm baffled by how my husband doesn't complain of pain, even when he fractured his elbow last year and metal was sticking thru skin after his surgery. We'd have to watch his face to gauge the amount of pain he was in. Ditto present day with his fractured vertebrae, cracked rib and dislocated finger. I had to look for the grimace to alert the nurses he needed his pain med, otherwise they left him alone staring at the ceiling (and I'm assuming somewhat in pain). Everyone is different, that is evident. Good luck assessing your dad's needs. Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Sep 28, 2010 12:26 am
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: Pain
Dad has had groin pain for quite a few years now prior to even being diagnosed with Lewy Bodies. He has Paracetamol twice daily for pain but I feel it is not sufficient. Are there any interactions that we need to be aware of with pain killers? When ever I tell mum about it (Dad is in nursing home for past month) she says there isn't anything much else he can take because of drug interactions. I do know he is on seroquel and blood thinners as he had a stint put in 5 years ago and probably an antidepressant not sure which one. Always I get this excuse from his GP and mum even natural therapies were not recommended when he was first diagnosed is this a true concern? Just curious. I feel they go through enough without being in physical pain as well


Mon Oct 18, 2010 6:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Pain
Paracetamol is the same as acetominophen [tylenol] in this country and probably isn't too effective against severe pain. If he is still ambulatory they might not want the increased confusion and risk of falling that might result from narcotic analgesics. Obviously, if he is on blood thinners he can't take anti-inflammatory medications. There are those on another forum whose LOs are bedbound and take morphine for pain but it does make them wacky [-er].

_________________
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.


Mon Oct 18, 2010 6:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: Pain
My dad is currently on the Fentanyl patch which they replace every 3 days. If he has acute pain that the patch isn't helping much, he can have additional Vicodin. I do not believe he has any adverse reaction to either of these. He has been very calm and unagitated the past 3 days when I've seen him, so something is working! I'm sure this is very individual, so going slow and adding only 1 new med at a time is probably advisable till you know what works (or doesn't). Good luck. 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.


Mon Oct 18, 2010 9:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Pain
Lynn, your dad isn't ambulatory, is he? Do you think it might be a safety issue if he was walking? Just wondered.

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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.


Mon Oct 18, 2010 9:28 pm
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