Hi, I’m new to this forum. My Mom, 75, was diagnosed with dementia in December 2013 and later with PCA (posterior cortical atrophy). Since Feb 2014, she has been complaining constantly about her legs and feet which give rise to a virtually minute by minute commentary which includes them “hurting” or “not being able to walk on them” (she consistently walks about half a mile a day with my Dad and the dog) or “dragging” or “being prickly”.
She’s had multiple physical tests none of which show signs of anything physiological. Painkillers don’t make any difference. The medics are at a loss. They took her off Rivastigmine in February thinking that this might be the cause (the problems started well before Rivastigmine) – this resulted in no change to the legs / feet but a significant reduction in cognition which has not been recovered since she went back onto Rivastigmine about 2 months ago. My Dad and I don’t know how to respond any more - any form of distraction is short-lived.
My question is whether anyone else has ever heard of such a thing and is there anything else that we can or should be doing to alleviate her symptoms. Could it be a part of the dementia and therefore to be lived with?
I don't want to confuse you any further or get off at an irrelevant tangent but I wonder if anything I might say here would be of any use. I don't actually know how long your mother has been suffering so if the pain has become chronic in nature.So I am not the dementia sufferer. My mother is, aged 91 but I am a sufferer of chronic pain which has been going on and evolving over 7 years. I also attended some extensive NHS courses for Chronic Pain in one of our local hospitals, the neurology department for which is a centre of excellence. Actually my pain is in my foot and leg but also affects the other leg too. What I have learned is that all of those investigations I had over the years to try to find the reason for the pain were only exacerbating the pain and the feeling of dysfuntion which accompanies it. No-one ever found a reason. That leads the sufferer, me in this case, to search harder, and to describe harder to those loved ones who will listen, the way the pain is affecting you at any one time. Maybe if i could just explain that pain better someone would be able to help, I thought. But the focus I was led to have by all the blind alleys I followed only sought to (in the words of pain management) amplify and grow the faulty neural pathways. Being disbelieved only seved to make me want to prove my point to myself and others more. Don't get me wrong, I think I had origins for the pain, some one sided abdominal surgery which i felt to be traumatic and a foot which got injured on the same side...but recovered or so I thought, at least temporarily.
This is what pain management in it's very essence, taught me - that focussing isn't good and will make it worse - but you can't try not to focus if the painful thing is there- and no-one doubts that chronic pain is real. Instead the pain sufferer must try to engage, as they can, with trying to enjoy those things they previously valued in life, but feel the pain has been stopping them from doing. So instead of trying to walk for pleasure - I walk for purpose and I take a fold up seat - a visit to the retail park or a visit to the zoo(as in my case I love animals). Also I was started on some whole body gentle stretches and exercises which I try to maintain daily, even if only for a short time. The other component is about learning to relax through whatever means...so that includes being comfortable with the relationships in ones's life and being understood.The latter can take a little working on. Pain can be related to previous trauma of a physical nature but one's propensity for chronic pain's development can go far deeper into psychological traumas in the past and those occurring now, and the latter - you just have to be aware of and bring into the open. I do have some difficult memories from childhood but my more recent but longstanding emotional turmoil has been around dealing with the dementia my mother has shown signs of for years.
The other thing I would mention is that you say your mother is giving a virtual "minute by minute commentary" on her pain and the feelings accompanying it. This suggests she still has the verbal capacity to do this. She is still focussed though and is seemingly not forgetting to focus. My mother, who is now in a care home can get an almost obsessional focus upon a pain but because of her increasing forgetfulness now she can keep that focus one one thing up for a while - eg her tooth, or maybe her hip, or maybe her back but a week or so down the line the focus is gone and then there is a new pain focus. This is not to say that any of her pains are not real but humans can suffer very difficult pain signals from a real cause and because of their brain excludes it they sometimes don't feel it.