My foot curls up and walk on the side everyday I went to my doctor she told me is arthritis? ?? I been searching for answers
Confused : My foot curls up and walk on the... - Cure Parkinson's
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Dawn52
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It sounds more like dystonia.
Mind used to do that. I eat a banana every day and the problem went away. Hope it works for you.
Yep my toes curl from time to time and it is dystonia
My vote goes to Dystonia.
Hi Dawn 52, ". . . walk on the side (of my foot)": you have described exactly what sometimes happens to my left leg & foot after I have walked rapidly for a while. (My left side is the one affected by PD tremors.) As far as I can tell, the muscles in my leg tend to cramp up and force me to walk on the left edge of the left foot. It's quite painful to walk like that, and it makes me limp. By walking slower or taking a rest, I can relieve this symptom. I do not have any arthritis. Curling of the toes is not something I have noticed so far.
Check with your Neuro, this is one of the symptoms of PD. I have it in both feet.
It is more than likely Dystonia. The foot can curl under or the big toes can stick up , even twist to one side as well .
My husbands turns up when it started first . I had no idea why so I just googled Parkinsons sticky up toes . Up popped all the answers. I do that a lot search if something is worrying me,
Google Parkinsons uk feet.
It can als cause severe cramp pains under the foot and up back of leg . I over came that for him by raising his knees in bed . He uses a hospital style bed now .
I find his Dystonia kicks in worse a hike after taking his Sinemet . It's one of the reasons we are refusing them . Hs thumbs also stick up and fingers curl inwards and become stiff rigid
Wow that's be really helpful at least I have a fair idea what's going on with my foot it's been very frustrating ..so it comes with the twitches in the body as well while I'm sitting? Makes a lot of sense definitely needs to look into maybe the Nero area .
I have looked into this with the help of The Dystonia Society as I have this problem ... My left foot turns inward and cramps making walking impossible. It happens when on low meds, often in morning and is relieved after about 45 minutes of taking Sinemet. Curiously, it is thought that this problem is a seconda ry side effect of Sinemet itself!
Hello from another who goes through the ritual of feet and toes curling .
Every morning as I stumble out of bed, usually around 4.00 am after sleeping most of the night rigidly in the one position as, you probably know, it's so hard to turn over , the feet, sometimes both, but mostly only the left screw under. I creep along on my toes which really hurt. It doesn't last long but I do have to find somewhere quickly to sit down.....sometimes I don't get past the end of the bed but the action of sitting down breaks the spasm. It doesn't bother me again until next morning.
This brings me to mention how apprehensive I am going to bed. My pill regimen stops at dinner time leaving me basically not medicated all night. I have waking periods and find I cannot even pull the bed linen up or, at times, its wrapped around me and I have difficulty extricating myself out of it......my husband comes to my rescue.
I am quite frightened with these spasms and long for daylight. My days are quite good and I function normally. Still drive and manage my personal routine and household chores. If the Dystonia plagued me during the day all that would be impossible.
Apologies for this long Epistle but wondering how others manage their nights.
HGE
Hi yes it's so good to hear from others at this stage my doctor has not diagnosed me as she stated that it's serious case of arthritis sonic am not on any medI cation at all.so decided to seek a little help on line thank you
As far as turning in bed, have you tried silk/satin pajamas? Someone on this site told me to try them & they helped a lot.
That's together with satin sheets! 
My poor husband slipped and slid all over the bed when I tried the satin sheets. I now use the satin pj's and he stays put, and I can turn over a lot more easily.
I was quite happy for him to slide right out and go into another bed and bedroom because with my PD problems and his off the record snoring, I wan't getting any sleep whatsoever!!
Have you tried taking your meds later at night closer to bedtime? You mention your pill regimen stops at dinner time . Maybe your not absorbing all your medicine because you've eaten. Just some thoughts.
Thought about it but if I space them out more then I am unable to have a good day. I could take more of course . Try to take them only 3 times a day i.e. 6 tablets of Madopar . My neurologist said, when, at one time i was taking 10 a day ," oh mmmmmm I dont like my patients to be taking that many"."......thats when I cut back.
Anyway I manage........see him in July. I live in a small rural area and have to travel some hours to see him.....6 hour return trip.
I will have lots of ammunition though to go over with him......
Ta!! to everybody helping with their experiences. We sure are not alone......there is only a group of 4 though, here, where I live and we meet regularly for discussion and a bit of fun....we all have different symptoms ....the 2 males both have had DBS......they swear it was the best thing they ever did BUT I'm not sure it's for me.
Enough for now...I have to go to bed.
HGE
Just a quick question where about r uz what area
Queensland Australia
You don't mention what dose you are on. There are different doses of Sinemet maybe instead of more pills just increasing the dose of what your already taking would help. They say no more that 6 Sinemet a day 10 was a lot. The other suggestion ask about changing to Rytary it's a fairly new drug that came out. I don't seem to have the issues I had when taking Sinemet.
My doctors hasn't put me on any meds coz she hadn't diagnosed me for this but I'm. Getting answer by talking to people on line
Madopar 125
I take 1/2 pill when I go to bed and that carries me until 5:30 or 6 am.
Gee just half a pill?
I will try anything.....certainly avoiding protein and dairy when taking Madopar is advised and I try to stick by it but can be hard .
I take 5 of the 25/100 pills during the day and 1/2 pill at night. Works pretty well.
How long have you been on this dose?
I have been on Madopar since 2005 so it's not as effective now.
Bridielina, your night sound so much like mine. I don't look forward to night since it is an ordeal turning over and I get painful muscle pulls when I try to stretch my legs. Often by 3am I just give up and stagger to my laptop where i browse. I don't take my first meds until 5am so I'm too stiff to do anything productive.
About toes curling up - that happens also when my meds have worn off. When the meds kick in they go back to normal.
Like you, I function quite well during the day and I do enjoy my afternoon naps.
Yes, I too stagger to my reclining chair and my iPad gets a good workout. I do make myself a tea or coffee with great difficulty as am so wobbly and aware that this is the perfect scenario for falling. I have thought about making up a flask of my favourite brew and leaving it by my chair. Sensible but at times just so lazy.
The same with me. I make tea but I'm so stiff it isn't easy to do that. Then carrying it without spilling it is a big challenge. I like your idea of preparing it in advance and leaving it by your chair. Let's try that....
Have you seen consultant or Parkinsons nurse .
The GPS and other don't always know that much about Parkinsons . There might be an exception but it's horses for course as far as Parkinsons .
The feet do appear to be worse in the mornings . Try rolling something up under the knees to keep them from stretching out . Stretch before you get out of bed.
My husband Di have it even before he was diagnosed but we out it down to Achilles' tendon he swam most days and I thought it was from kicking off the wall as he did his turns at each end of pool . Not so sure it was that now .
I will try stretching......had a full knee replacement 5 months ago which is still very touchy.......18 months before I will feel the total benefit.
So u take any Meds before u go to bed .a slow release
No medictation only panadol not on any other medication for anything either Not a fan of tablets
Dawn52 if you have not been diagnosed with any movement disorder try cbd oil. Cannibidiol. Completely legal and thc free. It may help you. Also when you get up with the cramping foot try putting on a hard open toe shoe or standing on a hard floor. I remember reading about this from a Michael J Fox interview. Again good luck. Judy
Sounds easy so will try. Thank you.
I tend to wear shoes in house on bad days it helps keep the foot straight and not so painful. .iv noticed I have a bit of a lean lately maybe due to walking on side of foot
Prior to my pd diagnosis I had 2 foot surgeries on my left foot. After that I started getting Charley horses up the outside of my left leg which would pull my foot into a complete u. It was so painful I would wake up screaming in the middle of the night. In the same breath I had cramps all over my body most of the day. Good luck I would try to see a specialty neurologist. Good luck Judy
Will ask about one when I catch up with Neuro in July. No such person as a Parkinsons Nurse where I live.
Dawn52
A Perspective. First, it is a small world, just had an appointment with my podiatrist today. Secondarly, a summe you are describing the turning of your foot (if left) in a counter clockwise direction, resulting in the weight bearing on the outside of your foot.
The inside edge sort of lifts up, bearing little if any weight. The effect on right foot to weight bearing would be similar, except the rotation is clockwise. What I have described is known as supination. I was diagnosed in 2004, from that point, have noticed that I was more affected on my left side. Currently I am challenged in a major way by posture. This is caused by a failure of the striatum to maintance balance between the extensor and flexor joint muscles. The extensor musles being weakened, resulting in the flexing and freezing of the joint. Physical Therapy involves strengthing extensor muscles and stretchimg flexor muscles for each joint.. Also involves conscious stackicking of joint alignment to maintain more up right posture.
Podiatrist looked at my supinated foot, said a couple of muscles pulling it in, while weak exterior muscles involved. He was willing to write a script for physical therapy on the spot. Sound Familiar? My take caused by PD, will address with PT.
BillDavid
BillDavid my husband has major problems with posture. In what country do you live? If it's the UK, did you get to see a PT for your posture problems on the NHS? What type of exercises can be done to strengthen extensor muscles? Thanks.
Email me cwmhib@gmail.com Live in USA
Sounds like dystonia to me. Do you experience Charley horses in your body? You may want to see a movement disorder specialist. A specialty neurologist. They can help put you in the right direction and rule out other possibilities. Good luck. Judy
My toes on the opposite side (left foot) to my tremor (right foot) go rigid fairly often, and usually when my feet are a bit cold. I have mentioned it in Consultant appointments but no-one has shown any interest so I have just assumed it's yet another Parkinson's problem that we have to grin and bear. As it is mostly when my feet get cold, I wear bed socks at night and close fitting slippers during the day and this at least helps me to walk normally. This morning when I got up they were pretty bad so I tried something I got some time ago which I haven't really tried before and that is a little sock (the shape of a trainer sock) but with separated toes. I wore them for about an hour and then put my normal socks on and it seems to have helped my overlapping toes to get properly into their own space and not overlap!
I wonder where I could source a pair here in Australia.....shall phone the Podiatrist.
Sounds logical.
I will try and find out where I got them from - I can't remember at the moment!
You can find anything on the internet. Google it.
I have had this for years. DBS helped but it is still a problem. I use c-l dopa er and Klonazapam. Also I stretch my toes upward manually frequently during the day and night. Also do the runners calf muscle stretch regularly.
I have the same problem with my toes curling. My Parkie side (Right side) big toe goes straight up & the other 4 curl downward. This makes walking very hard. I was DX 6 yrs ago. Have been on Sinemet 25-100 1 1/2, 5 x per day (just increased to this dose from 1 pill, 5 x per day. More Sinemet does help the toes but now I have dyskinesia) and Pramipexole (or Mirapex) ,75 mg. I had DBS 8 months ago. I DId not have the toe curling before DBS. I did take Azilect once a day before DBS but was taken off it after surgery. I was wondering if anyone else is taking Azilect but still has the curling toes? I also do the stretches and PT for my toes & PD in general.
The same thing happens to me when I am late taking my medicine. My doctor was unsure when it was also . For my research it appears to me that is dystonia. However it does respond to the carb-Levo medication I take. After about 30 minutes I get relief
I have a foot t hat turns inward and my middle toe curls under. My MDS said it was Dystonia and recommended Botox injections to relax the muscle. So far, I've only had two injections. You have to wait 3 months between shots. I have noticed a slight improvement. I will give it 2 more tries and if it doesn't improve, at least 75%, I'm done.
I have dystonia in my left foot, caused by PD. My neuro said that most dystonia in those that have PD is caused by the PD. However, in some cases the dystonia can be caused by too much of the PD medication. Whenever my medication has worn off, my toes start to pull and curl under. If I'm standing when this happens, I know I have to sit down within just a few minutes and take the next dose of medication or I will get a severe, debilitating spasm that pulls my toes under even harder and also turns the sole of my foot to the inside. As soon as the medication takes effect again, all this relaxes.
I can't go much longer than 4 hours between doses (each person is different). And since I live by myself, getting help from someone in the mornings as I get out of bed isn't an option. So, what I do is take a dose 15 minutes before going to bed and set my alarm (it's a rather soft, pleasant alarm) for 4 hours. When it goes off, I get up and take another dose, sit in the chair for 15 minutes, and then go back to bed with the alarm set for another 4 hours. It works for me and is much better than having my foot go into spasm as soon as it touches the floor in the morning. (I used to have bad leg cramps at night while in bed, too. But I've gotten rid of those by adding a magnesium supplement to my diet and by doing stretches for both the front and back of my lower legs several times a day. A magnesium gel topical rub was also helpful for my legs cramps at one time, but I've stopped using it because it leaves a film on my skin.)
reply to dawn walk on side of foot.
9 years ago, 7 years before i was diagnosed with pd i started walking on side of rt foot (pinky toe side) i began dragging rt foot. i was told i needed back surgery nerve in rt calf was dying. never any back pain. i waited 2 years and saw tons of doctors to leave back alone and fix rt foot. all said it was back. so i had fusion laminectomy and rt foot improved. now 7 years later i am having similar problem. now diagnosed with pd. is it dystonia...who knows.
pd diagnosis and treatment is as much an art as a science. rockport shoe (sole solid rubber) was cut and wedge inserted on out pinky toe side to balance out rt foot position. it helped.
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