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 Question regarding pain 
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Joined: Tue Mar 29, 2011 3:13 pm
Posts: 6
Post Question regarding pain
This may have been posted & I've overlooked. My DH has suffered with joint pain (arthritis) for many years. Hurt him to walk. He seldom, if ever, complains of joint pain or any other kind of pain now. He walks daily so I had thought that was helping his arthritis. Is is possible during early-mid stages they do not "feel" as much physical pain? There are times when I see him I think "that has to hurt" but he never complains of pain. And that is not like him at all...he never hestitated to complain when he was in pain.

Thu Mar 31, 2011 9:33 am

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Question regarding pain
My mother, who has probably mid-stage LBD, has severe arthritis of her lower back, hips and knees that gives her a lot of pain and makes walking difficult. She is just the opposite--complains bitterly of pain and in fact we just had an episode where she suddenly started complaining so much of pain in one hip that the SNF where she resides got orders from her doctor for stronger painkillers and x-rays to check for fractures. But I think both these situations might point to the same aspect of LBD. From what I am reading, an LBD's perception of pain may be affected by the disease so that the signals in the brain aren't working correctly. How they "feel" pain can be very different from what we might expect.


Thu Mar 31, 2011 9:41 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Question regarding pain
We have four disorders in our local support group. I do reading on each of them. Caregivers dealing with PSP often report that no matter how many falls, how many stitches, or how many broken bones, their loved ones never complain of pain. There's some fascinating research just published comparing "dysregulation of pain processing" in PSP and MSA. A neurophysiological test was given and found that those with PSP reported no pain. The authors surmised this was because the brainstem in PSP was more degenerated than in MSA, and the brainstem is where pain processing is controlled.

Perhaps some similar research will be done in LBD and will have similar findings. (Harder in LBD to do these sorts of tests because the diagnostic accuracy of LBD is poor -- less than one-third.)

Thu Mar 31, 2011 11:00 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Question regarding pain
When my dad first became extremely ill he never complained about pain, even after he developed a pressure sore on his tailbone and it went down to the bone and eventually got infected. He'd get furious if we even asked him if his pressure sore hurt or if he was in pain from anything else. He'd insist there was so pressure sore, and no pain anywhere. He never complained about pain when he fell either, or when he got mad and smacked his hands against any hard surface he could find, split the backs of his hands open and they were bleeding. Still, no pain.
A short time before he died, maybe a couple of months before, he was in such pain everywhere in his body. Nothing that we could SEE actually changed - no falls, etc. but he had pain everywhere and was in excruciating pain his last few weeks. He had a pain patch and morphine every few hours in the end. He would not say he was in pain, but he would cry out when anyone would touch him unless he had a dose of morphine right before they turned him or changed him. Or, if I tried to hold his hand he would grimace in pain. We didn't dare touch him.
It was so hard to understand - no pain when it seemed like he should be feeling it and terrible pain when there appeared no reason for it.

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 Apr 01, 2011 8:54 pm

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Question regarding pain
I'm glad this was posted. I have been wondering this same thing. My MIL does not feel pain. She used to complain all the time about her knee and the compression fractures in her back. Now nothing. She had surgery in January and felt absolutely no pain from neither the surgery site nor the skin graft site. She has a growth on her foot that looks extremely painful and must be surgically removed- again no pain. I guess that will be a positive thing when she has that surgery.

Donna (age 56) caregiver for mother-in-law Margaret (age 88).

Sat Apr 02, 2011 10:09 am
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