Leg and foot pain with dementia (PCA)

Bluesky22

Registered User
Jun 10, 2015
4
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?
 

liz56

Registered User
Feb 15, 2015
34
North Somerset
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?
Hi I haven't really got any answers, but Dad sometimes asks ( either dramatically, or frightened, depending on his mood) what is the matter with his legs, he can't move properly etc etc. When we try to find out more, it seems to be because he thinks he's about 20, and can't understand why his body is tired and stiff ( he is 84). Luckily it is not one of his obsessions, and we can distract him.
The other day he would not get up in the morning,because he said he couldn't move. I knew he could move, because he had just pottered along to the loo! So in his case the things he says about his legs are def to do with his dementia.
 

patsy56

Registered User
Jan 14, 2015
839
Fife Scotland
mother knows that she should walk (circulation) but always says she can't be bothered. Her leg skin is paper thin and she does have some cream to put on. (Personally I think it is just a moisturiser with a pain killer in it Doc prescribed) but she does go on about her legs being sore. Her feet are swollen as are ankles, but she does not exercise or walk but doc doesn't seem bothered.
I thought swollen ankles was a kidney thing?
 

Sue J

Registered User
Dec 9, 2009
8,035
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 have a friend who complains similarly of numbness and pain. What does help is if she wears support socks although she often doesn't remember but also use of a foot bath with a massage/bubble function. It can act as a distraction but I know it also works as if I am not there able to do it for her she will do it herself if I tell her to when she complains of the pain, she wouldn't bother if it made no difference. Ideally I think if it were done daily it would help or as frequently as possible. It also helps her frustration with the fact that Drs seem to ignore it and offer no explanation but having something done that makes her feel better helps her to know it's not just 'in her mind' which is the implication, to her, when Drs seem to offer no solution or concern, or if they have she's forgotten!

I have periods of spasmodic numbness in my arms and sometimes feet. I occasionally use a circulator machine, when I remember, I should use it more especially the days I am not up to going out for a walk.

I think it is part of the 'dementia' but different things may help to alleviate the symptoms, its just trial and error for each person. Maybe resting her feet up when sitting will aid circulation, active massage of the feet may stimulate the nerves. I hope you find something that will help.

Best wishes
Sue
 

nicoise

Registered User
Jun 29, 2010
1,806
My mother had foot and leg pain, diagnosed as peripheral neuropathy, which she experienced as prickling, walking on cotton wool, twitching legs and burning sensations, along with just "pain".

She was prescribed the standard medications used to treat this - starting with amitryptiline, then gabapentin (neither helped nor agreed with her) and finishing with duloxetine which helped relieve the pain and had a bonus additional effect of being an anti-depressant. She was also using Rivastigmine patches to good effect for her Lewy body dementia.

Try googling it (and neuropathy) you may find some similarities to your mother's problems, and there could well be a medication that might relieve her discomfort.
 

Bluesky22

Registered User
Jun 10, 2015
4
Hi I haven't really got any answers, but Dad sometimes asks ( either dramatically, or frightened, depending on his mood) what is the matter with his legs, he can't move properly etc etc. When we try to find out more, it seems to be because he thinks he's about 20, and can't understand why his body is tired and stiff ( he is 84). Luckily it is not one of his obsessions, and we can distract him.
The other day he would not get up in the morning,because he said he couldn't move. I knew he could move, because he had just pottered along to the loo! So in his case the things he says about his legs are def to do with his dementia.
I hope I'm doing this response correctly! Mom definitely knows her age (roughly, give or take 10 years) although she will often say that she can't get up even though, like you father, she may just have been to the bathroom. It helps to know that there are mystifying symptoms and I don't need to know everything. Thanks
 

Bluesky22

Registered User
Jun 10, 2015
4
My mother had foot and leg pain, diagnosed as peripheral neuropathy, which she experienced as prickling, walking on cotton wool, twitching legs and burning sensations, along with just "pain".

She was prescribed the standard medications used to treat this - starting with amitryptiline, then gabapentin (neither helped nor agreed with her) and finishing with duloxetine which helped relieve the pain and had a bonus additional effect of being an anti-depressant. She was also using Rivastigmine patches to good effect for her Lewy body dementia.

Try googling it (and neuropathy) you may find some similarities to your mother's problems, and there could well be a medication that might relieve her discomfort.
I've looked into peripheral neuropathy so many times! I am still convinced that it is something like that but the medics have told us repeatedly that it isn't and have given pretty credible reasons as to why not (although i can't remember the reasons now). Thank you for mentioning this as sometimes I do wonder if I am going down a blind alley and I think I will pursue this once more.
 

Bluesky22

Registered User
Jun 10, 2015
4
I have a friend who complains similarly of numbness and pain. What does help is if she wears support socks although she often doesn't remember but also use of a foot bath with a massage/bubble function. It can act as a distraction but I know it also works as if I am not there able to do it for her she will do it herself if I tell her to when she complains of the pain, she wouldn't bother if it made no difference. Ideally I think if it were done daily it would help or as frequently as possible. It also helps her frustration with the fact that Drs seem to ignore it and offer no explanation but having something done that makes her feel better helps her to know it's not just 'in her mind' which is the implication, to her, when Drs seem to offer no solution or concern, or if they have she's forgotten!

I have periods of spasmodic numbness in my arms and sometimes feet. I occasionally use a circulator machine, when I remember, I should use it more especially the days I am not up to going out for a walk.

I think it is part of the 'dementia' but different things may help to alleviate the symptoms, its just trial and error for each person. Maybe resting her feet up when sitting will aid circulation, active massage of the feet may stimulate the nerves. I hope you find something that will help.

Best wishes
Sue
Thanks Sue - I will look into the idea of support socks although Mom is very sensitive around her whole body and will only wear a particular make of white cotton socks (very cheap things from a supermarket) because these are the only ones she can tolerate for some reason - they seem a bit rough to me and I have bought her all sorts of lovely soft socks that she will not wear becaue they are uncomfortable. I'll look into the support socks - it might at least help her psychologically to see that we haven't given up. Massage sometimes helps and sometimes doesn't - and will only work for as long as the physical contact is taking place, immediately when finished the issue returns. Sitting with her legs up was also a miracle cure for a week or so and then stopped being a cure. Thanks for the input - I've never done a forum before but it does help to communicate with people who have similar experiences and can discuss at a practical rather than a medical level.
 

polly1

Registered User
Dec 8, 2011
307
Hampshire
Hello Bluesky22
My husband is 61 and was diagnosed with PCA in 2011.aged 57. He is on Donepizil and one of the side effects is cramp. He doesn't always suffer but if he drinks tonic water, it eases it. There is a 'closed' PCA group on Facebook that has a wealth of information relating to PCA. It could be worth joining. Also there is a charity called the Myrtle Ellis Fund set up specifically to help sufferers and their carers. It covers PCA and other rare dementias. Not sure what part of the UK you are in, there are PCA support Group meetings held in various parts of the country. I am in Hampshire and up until recently have been able to travel to the meetings in central London. We now go to the Wokingham (Berkshire) one that is run jointly with the Myrtle Ellis Fund and YPWD (Young persons with dementia charity).
Best wishes
 

patsy56

Registered User
Jan 14, 2015
839
Fife Scotland
duloxetine which helped relieve the pain and had a bonus additional effect of being an anti-depressant.

I think that is what mum has will check next week.
 

Sue J

Registered User
Dec 9, 2009
8,035
Thanks Sue - I will look into the idea of support socks although Mom is very sensitive around her whole body and will only wear a particular make of white cotton socks (very cheap things from a supermarket) because these are the only ones she can tolerate for some reason - they seem a bit rough to me and I have bought her all sorts of lovely soft socks that she will not wear becaue they are uncomfortable. I'll look into the support socks - it might at least help her psychologically to see that we haven't given up. Massage sometimes helps and sometimes doesn't - and will only work for as long as the physical contact is taking place, immediately when finished the issue returns. Sitting with her legs up was also a miracle cure for a week or so and then stopped being a cure. Thanks for the input - I've never done a forum before but it does help to communicate with people who have similar experiences and can discuss at a practical rather than a medical level.
Hi Bluesky

The body sensitivity I recognize too. It is interesting that she prefers 'rough' socks as maybe they are giving her some nerve stimulation that helps - there is always a reason! I wouldn't give up on the massage or lifting her legs as it may have stopped being a cure but it may work/help again in the future such is the contrariness of this disease. I experience the same as my friend, although not all the time and that is when walking , whatever shoes I have on it can feel as if I have nothing on my feet and not a lot of flesh to soften the bumps either. I too used to get terrible cramp and periodically take tonic water and don't get it anymore.

It is interesting what you & Nicoise write about the peripheral neuropathy as in my view it is similar but atypical in that it is not constant.
 

nicoise

Registered User
Jun 29, 2010
1,806
it is similar but atypical in that it is not constant
My mum saw her neurologist re her foot/leg pain, and the diagnosis was arrived at via he and I researching and trying out all sorts of ideas - if there is one thing I learned throughout all of this dementia journey (or indeed, anything to do with the brain) is that there never seemed to be a black and white definitive answer to anything!

The way something is for one person is different to another, a solution works for one person and not another, and so on!

At least here on the forum you can pool lots of ideas and try out untried things ;) Good luck