If it's any comfort, I know exactly how you feel. I remember when it first started for me, it felt like my feet were just so weak...you know how you'd feel after being on your feet all day? My feet felt like that as soon as I was up and at it for an hour or so. I would get this feeling sometimes that my legs were going to go right through my feet...strange...and another very difficult sensation to describe to my DR. Then came the continuous tingling, sometimes it's not so bad and other time it tingles so bad that it hurts and I get shocks through my feet and toes. After that came the burning, and I have to say that I hate that one the most. I am at the point now that I can not stand to put my feet flat on the ground for any length of time. When standing I shift back on forth from one leg to the other (which is partially due to my weak legs too) and when I sit I have to have my feet up on my toes. It is the most annoying when I am driving b/c it's hard to get relief.
I wish that there was something I could tell you about that made the pain go away. I am on Lyrica 175mgs a day and though I am finding that it is helping the pain a bit and lessening the muscle pain and cramping...I don't find that it has helped this issue at all. Neither did the surgery, though it improved my gait. I have accepted that this is one of the things that I will have to live with and accommodate. I do this by wearing well ventilated loose shoes (my feet tend to swell) and make an effort to get off my feet whenever I can. When I am making dinner, I find it useful to have a chair there and stand on one leg while kneeling on the chair with the other. I alternate back and forth. There are many times that I have looked down at my legs and thought "these don't belong to me" so I understand where you are coming from there too.
I want to say that I am very sorry to hear that you are experiencing this issue, it is a horrible symptom to have. Where are you in your Chiari journey? Pre or post op? Diagnosed?
I hope this helps you some!!
I just found out that I have chiari. Its wild to me cause for all these years I've been going through these problems. Like when I'm walking I tend to go side to side a lot. So I don't like to walk side to side with anyone. And I haven't really discussed options with my ns.. the mris that were tooking wasn't any good so I had to take them all over again. Now I'm waiting to see what he has to say. I cry so much cause I use to be able to do all kinds of stuff I was so active now I feel as if I've been robbed of life... its like how do you explain that your legs burn under the skin. Or your feet feel as if they were attached. Or it feels as if your head is going to split in two. When I sit down for 2-5 mins. And stand up I can't walk my legs hurt really bad and I walk as if I'm 100 years old. My daughter calls me her young old mom... I'm so imbarrassed.. of myself. I wish this would just be over. Last night I was in so much pain I really couldn't sleep. And its like ok my doctor know what I have. But he thinks I'm crazy when I describe what I'm feeling. I don't want to live with this I want it to stop. My heart is so broken. I use to be full of life. Now I'm just laying there joyless... in pain and depressed... I. Haven't been to work in weeks. I can't stand over an. Hour and I can't sit over 2 minutes ... what kind of life is that....
Oh my goodness I have ankle pain and upperleg to the knee pain that I can only describe as agonising, it got that bad in August that I could hardly walk and has now left me unable to twist my hip joint without it taking my breath away. I can never get comfy or sit for periods of time and at night when im in bed my legs just dont feel like they are there, they sort of feel stiff and heavy and I struggle to turn over in bed.
If I walk distances the pain intensifies and then my legs go weak.
Just wish I could be believed as I do have cm1 (6mm) but because I dont get the long lasting headpain associated with cm so dr's over here in England dont listen to me.
Niki x x
I often get this pain i described it to my doctor as having carpul tunnel of the feet but he just looked at me like i was dumb so i said no more lol. I often wonder who is going crazy first me or him !!!
Hi...I have had foot pain for yrs...and was even operated on for tarsal tunnel, which I found later I did not have...it was the chiari...
I had more of an electric shock feeling...static electricity....and the balls of my feet just hurt...and a lot of cramping in the arches of my feet as well...and I was always carrying extra shoes around thinking it was my shoes...I bought cheap ones, expensive ones, inserts...u name it I tried it...
Not sure if this helps as all......
Thanks guys.. I will keep everything you guys have posted in mind...
I just want you to know that you are not alone with these feelings that you are having, I have been there too and as I am reading what you wrote I am thinking that is exactly what I would say. I remember the side to side walking too before I even had any real gait issues, there would be times I would walk like I was drunk and keep bumping into the person I was walking with. When my gait issues really started it came on fast and I had no way of explaining it. I had my kids in school and I still had to take them, I got the looks (sometimes stares) and the questions that I couldn't answer b/c I didn't know what caused it. It is really hard to realize that your life has to change from what it used to be, I was very active as well and ran 3-4 times a week, in fact I was training for a marathon just before my leg issues began.
I just really want to send some positivity to all you that are going through this....it was a long tough road from surgery to now (11/2 yrs ago) but once I accepted my life as the way it was and started some meds to help with the pain, things have been so much better. I can't do all that I did before and I have to realize my limits but I have found so many things that I can do and enjoy. So I can't jump on the trampoline with my kids...but I CAN watch them and cheer them on as they show me their tricks!!! Once you get through this part of the process-finding a specialist and getting surgery- you will find peace with this. So keep looking for that light at the end of the tunnel!!
PS: kids are so versatile, they will adjust so quickly that they won't even realize after awhile that things are different...mom is still mom :)
I know the feeling , my feet feel like I'm walking on bruises all the time and they shoot pain up my legs! Sometimes I can't walk the rest of the time I am walking like a zombie they hurt so bad I cry
Hi and welcome to the Chiari forum.
So many of us seem to share this issue.......
Have you had surgery for your Chiari?.....Do you have any related conditions as well?
Outside my headaches, my feet/leg issues were one of my biggest problems for yrs and one of the first I tried to get help for....have you found anything to help you?