Curly toes and general "foot warp" are pretty common among PWP. I have had them off and on for the last five years or so. I haven't read anything that seemed definitive but will share what I know.
Mine are the type that strike when I first get up. They come along about one morning out of two and last about fifteen minutes if I just relax and wait.
For me, first thing in the morning means any where from 3 AM to 6 AM depending on how the gods are feeling. This is important because when I get up has a lot to do with whether I have them or not. At that hour of the day there is a lot going on as our bodies get ready to face the world. Among other things, we are pumping out hormones such as adrenaline and cortisol. Another time that we pump these out is when we are stressed. When we are trying to walk, for example.
Those early morning hormones surge through the body but then settle down and our toes uncurl. If we sleep later, then we never know what we missed. If we get up earlier, I suspect that our activity levels mask all this.
As to what helps mine, sitting quietly in the dark with soft music helps a lot. I try to take my meds in the dark first to minimize stress. And drink lots of water and be sure you get enough potassium, calcium, and magnesium, too. Good luck.
I HAVE TOE CURLING AND FOOT CRAMPING. I HAVE HAD DBS SURGERY AND AM NOT TAKING TYPICAL MEDS FOR PD, BUT I DO TAKE ANXIETY MEDS. FEET HURT SO BAD THAT I CAN'T WALK MORE THAN TEN MINUTES WITHOUT REST.
Poetrygirl,
The toe curling started about a year ago. Occasionally at first left foot which is my pd side. They Increased about six mouths ago till my right foot joined in. That one is the most painful, Seems I can control the left, work it out sooner but the right a mind of its own...unbelievable pain and it stops when it wants to. You just want to sit down anywhere you can and try working it out, usually they come simutaiously and you are not moving thats for sure, brings you to tears. I put sneakers on in the morning but they don't work all that well. I've been doing stretches and they help. We are sort of like mirrors with our symptoms.
Oct of 2007 when I started the meds. It took docs some 21/2 years to decide what was wrong with me. Too many minds and not enough sense.
Hope things get better and will keep in touch. I don't get on so often...computer irks me at times...especially when i'm off. Take care Spirit
The toe curling started about a year ago. Occasionally at first left foot which is my pd side. They Increased about six mouths ago till my right foot joined in. That one is the most painful, Seems I can control the left, work it out sooner but the right a mind of its own...unbelievable pain and it stops when it wants to. You just want to sit down anywhere you can and try working it out, usually they come simutaiously and you are not moving thats for sure, brings you to tears. I put sneakers on in the morning but they don't work all that well. I've been doing stretches and they help. We are sort of like mirrors with our symptoms.
Oct of 2007 when I started the meds. It took docs some 21/2 years to decide what was wrong with me. Too many minds and not enough sense.
Hope things get better and will keep in touch. I don't get on so often...computer irks me at times...especially when i'm off. Take care Spirit
Hi Spirit,
I don't get on very often either - I sit in front of a computer all day at work and the last thing I want to do is get on the computer at home. But it's the holiday weekend , , ,.
So far it's only the right side for me. I started taking my meds earlier in the morning, so it's been a little better walking into work. I still get toe curling, but usually it's at home where it's not embarrasing. I know what you mean about the pain. It's unbelievable! And it's so frustrating when I've forgotten something upstairs and I have to go back up again. It's almost impossible to put shoes on and I just have to wait it out.
I've also noticed lately that my foot turns out when the toe cramps come, so sometimes I'm walking on the right side of my right foot, which, combined with toe curling is even more painful.
Do you find that it gets worse the more you think about it and the more self-conscious you are? If it happens in public, I find that it does.
I hope you find something that works for you.
Take care.
Poetrygirl
I don't get on very often either - I sit in front of a computer all day at work and the last thing I want to do is get on the computer at home. But it's the holiday weekend , , ,.
So far it's only the right side for me. I started taking my meds earlier in the morning, so it's been a little better walking into work. I still get toe curling, but usually it's at home where it's not embarrasing. I know what you mean about the pain. It's unbelievable! And it's so frustrating when I've forgotten something upstairs and I have to go back up again. It's almost impossible to put shoes on and I just have to wait it out.
I've also noticed lately that my foot turns out when the toe cramps come, so sometimes I'm walking on the right side of my right foot, which, combined with toe curling is even more painful.
Do you find that it gets worse the more you think about it and the more self-conscious you are? If it happens in public, I find that it does.
I hope you find something that works for you.
Take care.
Poetrygirl
Hello, diagnosed 5 years ago, am on Sinemet since , I do get left foot( my Pd more affected) large toe curling and cramping more than on my right foot . What I did not read on this forum is it makes a hole on my shoes !!! I have not found a solution to that ! Shoes are bran new and in good shape but holed at the large toe left foot! Any suggestion?
Thank you for sharing .
Thank you for sharing .
Hi Chantal, for the past year or so I've been getting toe cramping in both feet. Used to be only right side, my affected side. When it occurs in both feet, it's extremely painful and impossible to stand, walk or do anything. My feet also cramp up and, I believe this is more due to calf muscle cramping. Very frustrating, but it has helped somewhat since I've been on long-lasting sinemet at night.
Take care.
Poetrygirl
Take care.
Poetrygirl
When my Levodopa dose increased, Dyskinesia increased from minor annoyance to bothersome. And soon I experienced toe curling (Dystonia).
To try to reduce Dyskinesia, I took less med doses and if I went a day or two off meds, my Dyskinesia was not present. I noticed the toe curling also disappeared.
In my case I was over-medicated with too strong a dose of Levodopa and have recently been reduced back to my low dose of two years ago. I also continue to reduce the number of daily doses too (from 3 to 2).
My Dyskinesia is considerably less.
Toe curling has not happened since reducing.
My feeling is that toe curling is a side-effect of Levodopa. Once I truly have to increase my dose, I think toe curling will come back.
To try to reduce Dyskinesia, I took less med doses and if I went a day or two off meds, my Dyskinesia was not present. I noticed the toe curling also disappeared.
In my case I was over-medicated with too strong a dose of Levodopa and have recently been reduced back to my low dose of two years ago. I also continue to reduce the number of daily doses too (from 3 to 2).
My Dyskinesia is considerably less.
Toe curling has not happened since reducing.
My feeling is that toe curling is a side-effect of Levodopa. Once I truly have to increase my dose, I think toe curling will come back.