Discussion in 'Other Symptoms' started by Sasha, Nov 18, 2017.
Yes, it was mentioned on the other place a while back, and nicknamed the starfish waddle
That's an odd name for the zombie shuffle
Yep. And I feel uncoordinated when walking. And I'm abnormally clumsy. Been this way for three years after a lifetime of above average coordination.
Its not exactly medical terminology so i suppose many names will get invented
This is the same clip i posted at the other place
I call it the ME Shuffle
sometimes my feet (or eyes) get confused about where the ground is. or one foot rolls outwards. or i walk okay, but drop the item held in my hand. or i walk okay, but collide with the walls / furniture. or i fall over on a flat surface.
i can stand still with my eyes closed - but walking heel-to-toe ends in wobble-disaster.
i tried to ride a bike again - rolled for 5 metres until i met a patch of shade, lost my balance and nearly fell off :emoji_cactus:
I get the drunk-like swaying as well. I have to concentrate while walking (although, I am so used to dealing with this now after 20 odd years of it, mostly since severe onset, 16 years ago).
I use a shopping trundle a lot these days and I find leaning on it really helpful for stability. Wish I had used something like this years ago.
I saw a lady take a bad fall last year while walking with the Nordic poles. They tripped her up. So be careful with them.
Anything we add to our walking like sticks, shopping trundlers, add risk of bad falls. Just a reminder to be extra careful when using these.
Yes, particularly when the light level lessens. I am particularly vision-balanced - put me in a 360º cinema and I fall over when the film moves round a corner (and that was before ME). I take our dog out for a walk each evening (he loves to chase the scent of foxes and cats), and wobble all over the place. It's the same trying to keep my balance if I shut my eyes.
A (healthy) friend of mine also took a bad fall with these.
When I was working, I'm sure there were times when people thought I actually was drunk because I fell over a couple of times, would often walk into the furniture and slurred my speech. I suspect that a lot of that was down to a combination of sensory overload and too much cognitive exertion. One time, just after leaving my GP's consulting room, I turned the corner but kept on turning and walked straight into the wall.
On the whole, things are much better now but I do still have a poor sense of balance.
I thought maybe two or three people were going to have this thing... wow...
B12 definitely helped me when I started having that issue. It seems to help with what I would call 'dexterity' I guess. I use the adenosylcobalamin form, and sometimes the hydroxycobalamin. Methyl-B12 is too stimulating.
The ME Association lists this as one of the possible symptoms with ME:
I concentrate to try to improve my walking but still wobble and weave a bit. A couple of times a bicyclist, who should never have been on the sidewalk but who stops these people?, nearly clobbered me. The cyclist came suddenly from behind but was gauging his course, I guess, by the perfectly straight line he expected me to be on, but of course I wobbled and came within a whisper of being badly knocked down on the sidewalk.
As far as what causes it, I always think of autonomic dysfunction, certainly low blood pressure is involved. But it is also the brain not keeping up with its tasks, and also being uneven in terms of sides. When I am particularly wobbly, I know one pupil is larger than the other and I feel more unconscious or numb on one side—can’t describe it precisely now but will try to be aware the next time it happens.
Back when my ME was becoming moderate (later severe) and I was still trying to push myself to work not knowing WTF was going on, my legs were covered in bruises from bumping into things. I had near-constant ataxia and a feeling of disequilibrium. I fell outside several times, even ending up in an ambulance once.
What helped was getting my B12 levels up with sublinguals. These days I can walk in a relatively straight line if I'm 1) concentrating hard and 2) well-rested but as my energy starts to wane I start veering and bumping into whoever I'm walking with, I look drunk/confused and get odd looks from strangers on the street.
It's possible that's what helped me at well. During onset, my walking wasn't too bad, but I couldn't keep my sense of balance on a bicycle, and would veer off the path or fall over (not fun with a heavy Dutch bike).
I started sublingual hydroxoB12 even before seeing a doctor about treating ME, since I saw it recommended on the fatigue clinic's website. Balance generally hasn't been a problem for me since the problems during onset, except with OI, and one or two occasions where I seemed to be having a herpes flare with cold sores and swollen tonsils.
Yes, I have this too. If I try to accomplish too much during a day, it will come on. Or if I go into a crash. I won't even notice I'm doing it in the house -- then I walk outside to the car and it's noticeable that I'm weaving.
My grandmother died of what was called an "MS like disease", before we knew of the MitoD in the family. As her symptoms got worse (before her walker and then her wheelchair), she would occasionally venture out to do an errand. Once a woman came up to her and told her she shouldn't go out in public when she drinks. Of course, she wasn't drunk, it was just part of the disease. Nasty people.
I saw the perfect comeback for that while watching an old episode of Ray Donovan last night (naughty language warning):
Are you getting your B12 levels tested first or are you just going to suck it and see (pun entirely intended).
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