Can you run ? Move quickly ?

[jann1033]

No, once early on I tried to play an active game with my kids and did myself in after about about 2 mins. I miss hiking and being active even 26 yrs later.

I can walk, albeit slowly , although not far. I am wondering if I should get a cane since I have to presently hold on to something due to lack of balance.

My legs stop listening to me if I get really bad(ie I can stand up , want to walk across a room but my legs won't move), left foot drag, weird feet slapping the ground feeling, don't know where my feet are, stumbling etc so running is kind if out if the question lol

 

[Hanna]

No doubt I have also this weird thing, not able to move quickly. It acts as if the muscle was suddenly stucked. Only doing slow movement is the rule for me. I may increase the duration of the movement/effort (...and then will face PENE), but in no way can I do the same with speed. I noticed it is not even related to increase of cardiac rythm. It feels like speed drives some disorientation to the brain, and muscles will be like "shocked" and petrified.
of course this is no science, just the way I feel my body.

 

[MeSci]

No, once early on I tried to play an active game with my kids and did myself in after about about 2 mins. I miss hiking and being active even 26 yrs later.

I can walk, albeit slowly , although not far. I am wondering if I should get a cane since I have to presently hold on to something due to lack of balance.

From what you say I would say yes - get a cane/walking stick. They don't cost much, come in a wide range of styles and types, and make a huge difference. I've been using one for years. I also use mine to hook things off shelves, to pull things towards me instead of getting out of a chair when I'm tired, and sometimes hook it over something to pull myself up (obviously one needs to make sure that it is something strong/stable enough!).

I call mine my multi-purpose tools!

 

[peggy-sue]

Michael's Mum was a "walking stick multitasking expert".

She'd stand in the middle of her kitchen and open cupboards with it, shove the laundry along the line, load the machine, put the lights on and off, lock the door, poke her pots of cabbage, boiling away for 6 hours with it...

She was a little miracle with her pokey stick.

 

[jann1033]

Yeah, I think I'm being kind of dumb about it. Since I look fine (if/when people see me Lol) I have this thing about people thinking I am "faking the need" ( most of my family and friends don't get it at all, partially cause I've given up explaining it) . that plus its something that means to me this has progressed and I have a hard time admitting that. so now I use walls, husband, whatever is handy but husband starts talking and wanders away then I really feel like I could fall so that probably would be worse. Blah, one more thing.

 

[MeSci]

Yeah, I think I'm being kind of dumb about it. Since I look fine (if/when people see me Lol) I have this thing about people thinking I am "faking the need" ( most of my family and friends don't get it at all, partially cause I've given up explaining it) . that plus its something that means to me this has progressed and I have a hard time admitting that. so now I use walls, husband, whatever is handy but husband starts talking and wanders away then I really feel like I could fall so that probably would be worse. Blah, one more thing.

I think that a lot of us have a very independent character and like to try to do things ourselves rather than ask for, or accept, help, even when we need it. So I get quite cross when I go to hook something off a shelf in a shop and the assistant rushes over to get the item down him/herself. Maybe they don't realise how deftly I can do it (and how good it feels to overcome a challenge)! I hate appearing helpless.

That said, I WISH people would understand my need to go slowly and not rush me, as a few seconds of excessive acceleration leave me exhausted and very hot, barely able to even stand.

But then, very few people can really understand what it feels like to have ME unless they have it.

At least you don't have to explain to inanimate objects like walking sticks why you need help and what kind of help, and you don't have to feel helpless and humiliated with them! They are tools to increase our independence, just as pacemakers are to heart patients and prosthetic limbs are to amputees.

 

[xchocoholic]

I'm also very very slow, if I try to move more quickly, I crash just after and have to rest.
I found a study about fibromyalgia and bradykinesia
http://www.centaure-metrix.com/PDF/articles PDF/AuvinetB.JointBSpine2006-EN.pdf

I finally got a peek at this study. Thanks. This study just documented the problem and recommended more research.

I started having more problems with this about 2 weeks ago. I've been walking about 20-30 minutes every day or at least every 3 days, pem permitting, for about 10 months now and all of the sudden my legs don't want to respond properly.

I can walk but it feels like my upper thigh muscles aren't strong enough to carry me. Which is impossible because I've been walking regularly for 10 months. Weird !

There's a good possibility that I'm getting too much gluten in my diet and my ataxia is flaring. Eating out has always been my biggest source of gluten cross contamination. So regrettably I'll start there. Rats. I was enjoying an easier diet plan.

Anyone else notice slowed movements ?

Btw. A cane won't work for me because my arms are too weak and ataxia can't be managed by a single support item. The swaying will take place unless all possible swaying routes are blocked. So it would be like trying to balance a ball on top of a stick. Lol.

 

[Cinderella24]

Running what is that again lol

 

[MeSci]

Running what is that again lol

It's putting one leg in front of the other many times in a row - fast.

I can remember the theory OK.

 

[Sherlock]

I can walk but it feels like my upper thigh muscles aren't strong enough to carry me. Which is impossible because I've been walking regularly for 10 months. Weird !

There's a good possibility that I'm getting too much gluten in my diet and my ataxia is flaring.

It sounds like you are out of fuel, just like the videos we see of a runner at the finish line who tries to go faster and ends up all weak and wobbly and falls down.

Using ATP faster than it gets replenished.

 

[Sherlock]

think that a lot of us have a very independent character and like to try to do things ourselves

Funny you mention that today. Yesterday I found that I couldn't open a Ziploc bag because of my fingers not working well. Rather than resolving to transfer the contents to a container that I could open, I thought about it and experimented until I figured out a way to open the Ziploc at will - involving a rather contorted means but it works and it meant that I didn't give up on doing it.

 

[nokmax76]

That's what happened to me Alex. I was on a crossing and hit by an out of control vehicle. The other people on the crossing managed to jump to safely but I was too slow. Simply cannot move and react as I would have done so before.

Even when my life is in danger my ability to jump or run quickly is impaired.

This, for me, is the scariest part of having ME. The thought that, one day, I will be called on to react or move quickly to save myself or someone that I care about - and that I will fail.

 

[Sherlock]

Out of ATP fuel - weakness, stumbling, apparent lack of co-ordination, collapse.

To skip the first 35 seconds--> youtu.be/p1UvxxYIv3U?t=35s