Foot Dystonia: I have learned from a couple... - Cure Parkinson's

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Foot Dystonia

Mechjack profile image
28 Replies

I have learned from a couple years of knowing I have PD that our symptoms tend to move around the body. For much of my diagnosed time it has been my shoulder and hands that have been unwilling to cooperate and have had pain and discomfort. They seem to both be better with an increased regimen of C/L.

For the past couple weeks I have dealt with very uncomfortable dystonia in my foot. My toes don't necessarily physically curl, but it feels like they are almost all of the time and my foot feels like a lead weight. Especially when I have been standing for a while.

Does anyone have any natural tips or tricks that might help relieve the discomfort.

TIA

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Mechjack profile image
Mechjack
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28 Replies
cgreg profile image
cgreg

From my experience, there are three things that provide me with some relief from my dystonia: 1) a foot reflexology massage device; 2) a massage using a massage gun; 3) a "Stanford gloves" treatment procedure using a hacked pair of bhaptics gloves.

Juliegrace profile image
Juliegrace

if you are taking levodopa you may need to increase your dose.

Farooqji profile image
Farooqji in reply toJuliegrace

Your are right

jimcaster profile image
jimcaster in reply toJuliegrace

I agree with Juliegrace. Dystopia in my right foot was a real problem until I began taking carbidopa levodopa.

Tagged profile image
Tagged

calf stretches on a slant board help me. 60 seconds a couple times a day seems to be enough.

Freiburg61 profile image
Freiburg61

This was one of my first symptoms 5 years ago - sometimes it feels as there is something like a stone under my toes. The best results I’ve got is massage with Castor oil blendet with another oil for example Rosenoil. The castor oil alone is very sticky. Or blendet with a cream called “Enercetica “. enercetica.ch .

7springshollow profile image
7springshollow

I had the same. I told a friend it felt like my toes were tied in knots. It finally went away

gomelgo profile image
gomelgo in reply to7springshollow

Went away on its own?

7springshollow profile image
7springshollow

Yes! But eventually going barefoot led to the formation of Plantar calluses so now I'm working on getting rid of those.

freefallmode profile image
freefallmode

I get foot dystonia after caffeine (eg. coffee) making it almost impossible to walk. Maybe some other people experience the same...

Mechjack profile image
Mechjack in reply tofreefallmode

Reading this as I drink my coffee. I'll watch out for this...

Jebbie12 profile image
Jebbie12

try wearing toe socks, it’s like a glove for your feet. Each toe goes into their own spot. Helped me!

gomelgo profile image
gomelgo

Have you tried toe spacers?

Mechjack profile image
Mechjack in reply togomelgo

I haven't. I think I'll try this.

eschneid profile image
eschneid

I see a number of peeps here get Botox injections for foot/toe dystonia.

DiagnosedAt38 profile image
DiagnosedAt38 in reply toeschneid

Does it really work?

BlockRuys profile image
BlockRuys in reply toDiagnosedAt38

yes.

CyclingGadgetBoy profile image
CyclingGadgetBoy

I've had dystonia in my left foot since I was diagnosed 9 years ago. No single identifiable trigger and occurs randomly. Latest advice was a botox injection which I am considering.

DiagnosedAt38 profile image
DiagnosedAt38 in reply toCyclingGadgetBoy

Did Botox work for you?

CyclingGadgetBoy profile image
CyclingGadgetBoy in reply toDiagnosedAt38

I have not tried it yet

Meramt profile image
Meramt

Two weeks ago I received three shots of Botox in the muscles of my back left calf with the aim of relieving toe curling primarily in second left toe. I have no pain in left leg. But when walking, my left foot feels clawlike and lifts up a bit higher than right leg and drops down harder. The doctor said to give it two weeks to see any results. So far, after two wks, no changes at all. Both legs are still as tight and stiff as before. I still walk every day, but the tightness makes it harder work.

Has anyone had experience with Botox for toe curling?

eschneid profile image
eschneid in reply toMeramt

I had injections for my big toe dystonia years ago and it helped for about 3 months/visit. The shots were in the bottom of my foot & calf- it was uncomfortable so I stopped. Also decided not to put that stuff in my body.

Mrsp12 profile image
Mrsp12

have you tried vitamin B1?

Mechjack profile image
Mechjack in reply toMrsp12

I tried, but could never get the dose right. It seemed to worsen my symptoms everytime I increased the frequency. I should probably give it another try, but it is hard to commit knowing it could be worse for some time until I figure out the right regimen.

Mrsp12 profile image
Mrsp12 in reply toMechjack

I know it’s not easy to find the right dose of vitamin B1,, if you can get the book Parkinson’s & the B1 therapy by D. Bryan. It helps hearing other people’s stories & working through the process. They suggest cutting back if your symptoms increase.

Mechjack profile image
Mechjack in reply toMrsp12

Bought the book and I'm going to give it another try.

Mrsp12 profile image
Mrsp12 in reply toMechjack

Keep me posted. Pages 34-44 has good content about the process. Sometimes I’m not sure if I should take more but when my mood declines I make sure I take a dose within a day. For me B1 is a mood changer.

I didn’t mention I do get some foot & toe cramps but I can work them out by myself. It’s minor compared to what others post here.

BlockRuys profile image
BlockRuys

Find a good doctor who has experience with botulinum toxin injections. I've been doing this for over a year now, and if I prepare well—meaning I make a video of the symptoms with some context and send it in advance to him—he knows where to inject and what to target. The procedure is quite comfortable and not very painful, and the effects last for several months for me. I do this every three months.

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