Foot Dystonia

[Mechjack]

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

[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]

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

[Farooqji in reply to Juliegrace]

Your are right

[jimcaster in reply to Juliegrace]

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

[Tagged]

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

[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]

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

[gomelgo in reply to 7springshollow]

Went away on its own?

[7springshollow]

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

[freefallmode]

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

[Mechjack in reply to freefallmode]

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

[Jebbie12]

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

[gomelgo]

Have you tried toe spacers?

[Mechjack in reply to gomelgo]

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

[eschneid]

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

[DiagnosedAt38 in reply to eschneid]

Does it really work?

[BlockRuys in reply to DiagnosedAt38]

yes.

[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 in reply to CyclingGadgetBoy]

Did Botox work for you?

[CyclingGadgetBoy in reply to DiagnosedAt38]

I have not tried it yet

[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 in reply to Meramt]

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]

have you tried vitamin B1?

[Mechjack in reply to Mrsp12]

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 in reply to Mechjack]

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 in reply to Mrsp12]

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

[Mrsp12 in reply to Mechjack]

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]

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.