Annoying Toe curling: What causes toe... - Cure Parkinson's

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Annoying Toe curling

nourilo profile image

What causes toe curling in Parkinson’s disease? Is it too much or too little levodopa?

29 Replies

Either and both. Its a complicated disease!

My husband's big toes and thumb nails were curved upward before he ever was diagnosed with PD or on levadopa. I found an interesting video on reflexology on Youtube that links the big toe to the vagus nerve! If you asked me a week ago about reflexology I would have been very skeptical, but after seeing this video I decided to look into reflexology more. I gave my husband a foot massage like in the reflexology video and it did stop his tremors, however it is not a permanent fix. The tremors did come back but maybe if I did the massage more often I could quiet the tremors for longer periods. It is one of those things that can't hurt, might help.

Here is another interesting link. Gout is linked to high uric acid and shows up especially in the big toe. PD is linked to low uric acid and has an inverse relationship to gout. Maybe the curled up big toe in PD is linked to abnormal uric acid levels like gout, only in PD they are low, not high. My husband has his uric acid levels tested and they were out of range low. He has been on the reverse gout diet to raise his uric acid levels and has been improving.

Zardoz profile image
Zardoz in reply to

Brenda49,

So your husband's big toes curl upward? I had always assumed that references to toe curling on this forum referred to curling down, as does the big toe on my right foot. There is also pain and inflammation in my big toe that makes me wonder if it's gout.

For those experiencing toe curling, which direction is it, upward or down?

BlueHawaii profile image
BlueHawaii in reply to Zardoz

I always thought toe curling was all the toes on one foot turning under like mine do when I forget to take my meds, and take an hour or two late. Then I can't walk.

Norasewer profile image
Norasewer in reply to Zardoz

Up, it's been doing this for 6-7 years. I guess I'm lucky, still no pain

in reply to Zardoz

His big toes and thumb nails curve upward. The smaller toes are kind of mangled looking and rigid and curve more under.

Smittybear7 profile image
Smittybear7 in reply to Zardoz

Usually up and happens when I sit. I also get quadriceps cramping when sitting. Massage helps me

albachiara2 profile image
albachiara2 in reply to

Brenda, could you, please socialize the video you are talking about? Thank you

in reply to albachiara2

I'm having trouble posting the link, but it is called "Classical reflexology Vagus nerve" by TouchpointDenmark on Youtube. I was looking for acupressure videos and then this just came on after one of those so I gave it a try. It seemed to help, at least temporarily.

albachiara2 profile image
albachiara2 in reply to

Grazie Brenda

Smittybear7 profile image
Smittybear7 in reply to

Thanks for sharing

Massage helps me

in reply to Smittybear7

I tried the video again and this time I may have massaged his foot too much. At first it relaxed but then started twitching more when I tried to stretch the big toe back into place. So then I went up the leg to just below the inside of his knee and pressed an acupuncture point there and the tremor stopped. With that in mind I pressed acupressure points near his elbow and he was able to touch his fingers to his palm again. I had tried all sorts of massage points on his hand and fingers in the past, but none worked. I guess the tension was coming from higher up the arm.

I put my hand around his arm near the elbow and asked him to try to make a fist, and noted where his arm felt the most tense. Then I had him open the fist and I pressed on his arm where it had been tight when making the fist for a few minutes. After that he tried to make a fist again and this time he could close his hand.

If you try this let me know if it works. There are quite a few Pubmed studies on acupuncture helping PD, but it seems like acupressure can work, too, at least it did for us.

Smittybear7 profile image
Smittybear7 in reply to

Thanks

Smittybear7 profile image
Smittybear7 in reply to

I had 24+ acupuncture treatments in 2018 for stress and tremors. I also have worked with a muscle therapist. I think acupressure and trigger point therapy helped the most. B

in reply to Smittybear7

What also may be helping are pressing spiney acupressure balls in those tight areas. He just started on that and can do that on his own so I will keep you posted. We are also doing Qi Gong and he does leg and posture stretches. He lays lengthwise on a rolled towel to try to fix his rounded shoulder / stooped posture and that seems to be helping. He is getting more upright. I have foam roller I use for rounded shoulders that but he is too tight for those yet and has had to start out with the towels.

Smittybear7 profile image
Smittybear7 in reply to

Thanks let's keep in touch. I appreciate your help and advice

Thanks for the heads up on the vagus nerve and reflexology. My toes curl up and my big toe captain (Seinfeld) does its own thing pointing upward and out. It is dystonia caused by PD and for me sinemet + mucuna takes care of it.

I also use this $10 Amazon item which I put under my desk and it helps the discomfort mucho.

Eric

11x7 inch wood rectangle with rolling wooden shapes to move your foot and toes over.
in reply to eschneid

Thanks for posting that I will see if my husband wants one. He currently has a spiney acupressure ball he rolls his foot on and that does help a little.

eschneid profile image
eschneid in reply to

Brenda,

Anything that relieves the discomfort a bit is a gift. Sometimes I sleep with soft shoes on as the toes dance and stiffen until meds kick in. Best of luck.

In my case, carbidopa levodopa eliminated toe curling. I was very frustrated by toes curling before I began taking carbidopa levodopa. In fact, toe curling was the primary reason I began taking medication. Good luck!

Dystonia. hang tough.

Yup, dystonia. Like Jimcaster, mine curl under if I'm too low on levodopa, i.e., waited too long to take next dose or food interference. But I've heard some people get it from too much levodopa...

eschneid profile image
eschneid in reply to rebtar

Rebtar,How goes the shoulder rehab. Hope not too painful or annoying. How good that first hike will be soon!!

rebtar profile image
rebtar in reply to eschneid

Shoulder rehab is going very well. I've starter physical therapy, and I don't think it will take more than a couple of months to get most of my flexibility and strength back. The pain level has been totally manageable and I was able to sleep horizontal for the first time last night! Thanks for asking.

We're kind of new to the PD world so I had to look up dystonia. I don't have PD but I developed dystonia, too, around the same time. (In my case my neck was permanently tilted to one side). We had changed our diet to be more vegan before we both got the muscle issues, so I'm pretty sure in our case the dystonia was brought on by our change in diet.

We started eating more meat again and have been doing things like Qi Gong, stretching, yoga, the foot massages and are getting better. We also started nutrition testing and we were both low in vitamin D and B12, and my husband was very low in uric acid (even after starting to eat more seafood and meat again).

Hi, for me it's been one of the lovely side effects that now comes with my C/L wearing off. This is a new development although I've been taking it for close to 3 years. Mine curl down I guess but it's really more like my toes just clench, only on my left foot, the side effected by PD. I can still walk ok and it doesn't hurt, it's mostly just annoying.

Toes curling under was one of my first symptoms of PD. Once I take my madapor I can watch my toes on the left unfurling until they are straight again - about 30 mins.I use it as an indicator of when to take my next dose of madapor .

One wierd thing though is that my second toe has now grown longer than my big toe on both feet. Peculiar.

Silicone toe separators may help.

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