Hopeful: My name is karen and I have... - Cure Parkinson's

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allgokr profile image
23 Replies

My name is karen and I have Parkinson’s. My muscle spasms are vicious. My toes curl when this happens. It’s painful and they can last 3 hours. This is not how life should be always painful. I have used a massager so fierce on my spasms that my legs are so bruised. I have had to stop using my massager now. My leg is now having to recuperate...I hope I can learn from others on what to do with my muscle spasms. Thank you

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allgokr profile image
allgokr
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23 Replies
Enidah profile image
Enidah

It sounds like dystonia. I had that so bad before I got diagnosed with PD that driving home from work was agony as I had to use my right foot for the gas and brake. Not an issue since I got on the meds, although it took a while to vanquish that particular symptom. What are you taking for your PD?

Some people get relief with botox injections. Plus it'll take care of all those unsightly foot wrinkles, ha! I never had the shots because in my little community there wasn't anybody that was doing that.

The curled under toes have now switched to my left less affected side but I don't have that horrible pain this time.

allgokr profile image
allgokr in reply toEnidah

Levodopa, magnesium and hemp oil. Just had Botox shot where I was having spasms. Now having spasms in same leg just moved to different area.

park_bear profile image
park_bear

What, if any, meds are you taking?

Magnesium can help. It can be taken orally in various formulations, or sprayed onto the affected area as a magnesium chloride solution.

allgokr profile image
allgokr in reply topark_bear

Levadopa is what I take. I also take magnesium orally

The magnesium spray helped me too. I use it with a spray almond oil. The oil helps it absorb quicker. I spray it on the soles of my feet. Instead of rubbing the muscles, try just running your fingertips over the muscles lightly. It helps to focus on how that makes your skin feel and the muscles seem to relax with the distraction. If you are taking meds, check the dose amounts and side effects. Sometimes taking less or changing when you take something helps.

Gently stretching muscles at the first twinge helps too. Try putting your feet up and move your toes as if you are writing in the air with them or making clockwise and counter clockwise circles. Good luck.

chartist profile image
chartist

Many have reported relief with the spray mag oil (MO). Like anything else, it doesn't work for everyone, but if you are one of the ones that it works for, it is an easy non-invasive fix. Here is a link to one product that is inexpensive for you to test with. Read some of the reviews to get an idea of what all MO can do for people. If it works for the muscle cramps, you can apply to the affected areas before bed and it will likely keep the cramps away all night.

amazon.com/Magnesium-Oil-Sp...

Art

allgokr profile image
allgokr in reply tochartist

My spasms are during the day not at night. I take magnesium hemp oil. Tried a Botox shot and that night the spasms started elsewhere in my leg. Sometimes my leg and ankle will feel thick. Meaning like it’s asleep but I know it’s not. I have a massager I use on it. But now I have used it so much lately I can’t even touch my leg with a massager. It is so sore now that I have to let that heal.

Kwinholt profile image
Kwinholt

Hi Karen, I’m Karen as well. I was diagnosed heading towards 7 years and had severe pain , spasms , curling of my toes, twisting of my foot and ankle ect. Cd/ld does help but i also get Botox injections every 3 months several places on my legs and the bottom of my feet. Exercise and stretching are helpful and I am fortunate that my husband will rub my feet and muscles when they get stuck in place. I also get dystonia in my face , where it looks as if I’ve had a stroke if I don’t take my meds on time. So I’m very scheduled. At the beginning when my pain was unbearable I used CBD/THC Tincture and that helped . As years have gone by I’ve learned other strategies as well. Take care. ❤️ Karen

allgokr profile image
allgokr in reply toKwinholt

I take c/l. Just had Botox where spasms were and that night started having spasms in different area of leg. Still just as bad. I take magnesium.

Kwinholt profile image
Kwinholt in reply toallgokr

Karen, Does the magnesium help ? I’ve it does help a lot of people here. When I receive my Botox injections , relief is not immediate , it takes a couple days . But when it wears off , it’s very obvious. I hope you find what works for you and get some relief. With me, as the years progress with the disease , my dystonia has moved towards my neck (cervical dystonia) and shoulders ect. Some nights are hard to get comfortable to sleep, but tomorrow is a new day. Karen

I used to have shocking muscle spasms and curling toes mainly during the night. I used to wake up with agonising pain. It helped to walk around, stretch and rub affected parts with magnesium lotion. I also took a panadol.These have improved since taking Neupro Rotigotine patch.

Hikoi profile image
Hikoi in reply to

Lemur you clearly have off dystonia so the

longacting agonist helps. A small amount of sinemet might also work.

in reply toHikoi

Thanks Hikoi

Idofotos profile image
Idofotos

Theraworx. Get it at Walmart. Rub it between your toes and anywhere you’re cramping. It works for me.

Misticsoul profile image
Misticsoul

You should take magnesium

Theonate a lot and potasium

Hikoi profile image
Hikoi

Karen, dystonia can be caused by too much c/l just as it can be caused by insufficient carb/leva. To complicate matters it can also occur with fluctuating levels of dopamine in the body. I would suggest you keep a diary for a few days of the dystonia and time of meds and see if there is a pattern. Does it happen at peak dose or when meds are wearing off?

I had a friend take more c /l when her toes and feet curled and she got into a worse and worse state until a neuro realised and put her on a strict time regime for meds. Good luck.

allgokr profile image
allgokr in reply toHikoi

Thank you for your input😃

Cindyross profile image
Cindyross in reply toHikoi

Following

Earthman profile image
Earthman

Hi Karen, My toe curling / dystonia was caused by too much levodopa. I decreased my c/l dosage in half and started using 3 g of mucuna pruriens instead 3 times a day. The toe curling and some of the dystonia went away. Also, I stated using AMANTADYNE once a day and it seemed to help. Good luck!

allgokr profile image
allgokr in reply toEarthman

My toe curling and tightness was my first symptoms to Parkinson’s. Just the tightness has turned into severe spasms, but I will see if cutting back on my meds will help. Thanks

GymBag profile image
GymBag

Interesting post, My toes curl only when I walk about half a block. Then if I sit on my walker for 5 minutes I can walk back. Eliminates the possibility to walk fast and get any exercise. I will try the magnesium. Thanks for the post

HeartSong profile image
HeartSong

I had started awakening with charlie horse type cramps in my calf muscles every morning around 4 a.m., even though I was taking oral magnesium supplements. At a friend's urging about 5 years ago, l also started rubbing magnesium oil on my feet and lower legs every night just before going to bed. I've continued every night since then, and I haven't had anymore night time cramps in my calf muscles with one exception. After having used the magnesium oil for the first year, I experimented with not using it for a few nights. The calf muscle cramps came right back. So I went back to using the magnesium oil and haven't stopped since. This is what I use: amazon.com/MAGNESIUM-OIL-US...

It will leave a slight film on your skin which will get on your sheets if you use it at night. However, it washes out easily in the laundry. I also wear socks to bed which help to protect the sheets.

I sometimes have intense toe and foot curling and twisting during the day when the l-dopa starts to wear off and I am pushing myself too much. The best things I can do to prevent these frightening episodes is to take the medication on time and sit down for a few minutes while it takes effect. While I'm sitting and waiting, I do a self massage (usually on my face) or some deep breathing exercises. Both help me to stay generally a little more relaxed, which probably helps to at least decrease the intensity of the curling and twisting spasms.

I believe that our healing is possible.

allgokr profile image
allgokr in reply toHeartSong

Thank you for your input and information. It’s tough having to go through these spasms and toes curling. I hope all goes well with you. I will check out Amazon for this

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