Curling of toes

[Rosabellazita]

Anyone else?

[etterus]

Yes. One of my worst symptoms. DBS has helped immensely. I still need to stretch them regularly. Best technique for me is to kneel with my toes into the carpet pulling them and my foot towards my knees. Hurts but helps. Keeps the tendons from getting shorter DYSTONIA IS A PAIN!

[BUZZ1397 in reply to etterus]

Thanks for the stretch tip

Are usually just put my hands on the wall and step Away from the wallBackwards to stretch my toes and caloves

[Grumpy77 in reply to etterus]

What's DBS?

[etterus in reply to Grumpy77]

Deep brain stimulation

[justhavefun2]

Me,too...makes running in the pool a bit painful, but gotta do it! Thanks etterus for the stretching advice!!

[johntPM]

In my case dystonia is linked to being under-medicated.

To test for this ask yourself the question: is the curling worse when you are at the end of a dose? If yes, you might wise to increase your meds by increasing the dose, or by increasing the frequency or by adding an inhibitor.

John

[Rosabellazita in reply to johntPM]

No end of dose because im not taking any meds

[rebtar]

I have that with exercise, sometimes just normal walking if i'm stressed. Since I try to get as much exercise as possible, I find that the shoes with toes (vibram brand) help a lot. Or going barefoot.

[BUZZ1397 in reply to rebtar]

Yes barefoot totally helps the most until your feet start hurting from walking on the hard floor surface but Walking on grass or sand is wonderful

[camper1]

Yes in the morning before I take my meds, painful!

[harding55 in reply to camper1]

That's when mine does it too

[camper1 in reply to harding55]

Neurologist said it’s the lack of dopamine in the am and that’s when it is most common in parkinsons patients.

[jrg54321]

Happens a lot on the spin bike in my right big toe. It eventually stops after a few minutes. I just keep going and stretch out my soleus muscle on the pedals.

[Coblrman]

I elevate the hurting foot higher than the other foot so pain is not as bad.

[Bouffere85]

Me too painfull & big toe holes in most of my socks ! Any advice on that?

[Ratzkywatzky]

Me too, especially when running, does seem to come and go in terms of frequency , seems to creep up in severity when get slack about exercise regime.

[CplParkinson]

Dystonia, what a pain. Would hit and take my legs out from under me. Then bad ones would take my right shoulder and leave me in a fetal position in treats and so much pain. And I couldn't do anything with those until it passed. When it was just the legs I could stretch the muscles the opposite way the dystonia was pulling them and stay that way for a few minutes.

Dbs surgery with just the leads made my dystonia gone. At least mostly, very little if any only with stress now.

[etterus in reply to CplParkinson]

I’m curious.. how long ago did you get the surgery? How long did you wait to have the electrodes turned on... and where did they perform this?

[CplParkinson in reply to etterus]

2016 October, about a month before turned on. Of course during the surgery I was miserable when they had to test the leads. Dystonia was horrendous. But once all was done things turned around and I was so happy.

They did it at North shore Evanston hospital, Chicago ill.

[etterus]

Deep brain stimulation