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!

Frank was dx 5 yrs ago and has never commented about any type of 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

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.

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.

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!

Add on to my previous post:
Yet there were times he complained of pain and we never found a reason for the pain!

I guess these anomalies are the result of signals not getting through, just like the other symptoms, huh?

Pat,
That would be my take on it, the wires are crossed and they sometimes just don't get the correct signals!

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

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

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

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].

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

Lynn, your dad isn't ambulatory, is he? Do you think it might be a safety issue if he was walking? Just wondered.