Feeling helpless😢: My mum was diagnosed PSP... - PSP Association

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Feeling helpless😢

Careenh profile image
Careenh
•11 Replies

My mum was diagnosed PSP in February this year after being unwell for a number of years. We are coping with the speech and movement difficulties even the swallowing and choking. What I am really struggling with is the constant state of anxiety and distress. Recently complaining about pain in her leg but doctors can't find anything wrong? GP prescribed some anti depressants but the side effects are just making the PSP problems worse. Just don't know what to do to help her😢 it's heart breaking. Has anyone else experienced this? I'm wondering if the pain is in her mind? I would appreciate any comments. Thanks all. Xx

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Careenh profile image
Careenh
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11 Replies
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I am not sure about the anxiety issues. Dad has never really shown any.

Leg pain COULD be muscles starting to spasm or something like that.

Sorry I don't have any real good info for you.

Ron

It could be something like 'restless leg syndrome' Look it up on the internet. That might give you a clue!! Doctors seem to know so little but if you can offer some info especially with respect to your knowledge of how your mother really is from day to day, you might get better help. Best wishes.

JA10 profile image
JA10

Hi, my mum also has had pain in her hip. We spent some time seeing a doctor about it and they said it was inflammation near the joint, possibly due to a change of use. She had started to be sitting a lot more than ever before as her PSP symptoms meant she was very unstable, so was moving minimally. She had an injection (which they used an ultra sound scan to pinpoint the exact spot) which helped a little, now she is in a wheelchair almost all the time and sometimes uses a tens machine to help with the pain control. She also has a new wheelchair which is slightly wider and I think it is much more comfortable, her old one was quite tight. Though she also has a range of painkillers anyway, I haven't heard her complain about it, other PSP symptoms have over taken her. Julie

jillannf6 profile image
jillannf6 in reply to JA10

i agree

lo l jil]

xxxxxx

Marie_14 profile image
Marie_14

Careenh my husband complained of pains in his legs. I used to massage them for him with a cream you can buy from Asda. It lasts for ages. He got it on prescription but the exact same thing can be bought from Asda. Can't recall the name of it but think it might be in one of my old posts.

Marie x

Richard33 profile image
Richard33

Hi,

The pain in the leg could be dystonia - wrong signals sent from the brain to the leg - but a very real pain. My wife has pain in the foot and lower leg (right foot is turned in). Botox injections have been helpful (turns the muscle off temporarily) but still some pain. No cream or oral pain relief helped - apart from making her dizzier.

I encourage her to take an anti-depressant because it is no life if you are depressed the whole time. Floroxetine 20 mg definitely helped but maybe brought on more dizziness. Now trying Trazadone 50mg but too early to say if that is better.

Hope this helps with this horrible situation!

Richard

Pentland profile image
Pentland

My husband also had pains in one of his legs on and off but only in bed. We could find no cause. I rubbed on Ibuprofen gel which seemed to help. Raising his leg in bed also had a definite benefit. Good luck.

NHGrace profile image
NHGrace

You might also try some pain reliever cream. I don't know where you live, but I get boofreeze (like Ben Gay) off amazon and run it into my moms back, neck and hips. Or anywhere the gets hit during one of her many falls. Def worth looking into RLS though also as there are meds for that. As for the anxiety, maybe an anti-anxiety (rather than depressant) would work? Good Luck!

NHGrace profile image
NHGrace in reply to NHGrace

Oops BioFreeze!

Sonse profile image
Sonse

My Dad has PSP and gets severe pain in his legs. We massage his legs with aspercreme with lidocain. The tube says not to exceed 2xs a day, but his doctor told us that we could do it up to 4xs a day. This provides him very little relief, but we'll take what we can get. Good luck.

cabbagecottage profile image
cabbagecottage

Maybe if u posted some misic shr use to enjoy . Try to distract her mind

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