• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Off my legs -weird "funny turn"

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I had been feeling much much better recently. No cause -I hadn't taken any supplement or anything. Just so much improved. More or less like normal life. Not pushing it but getting along with things. I have even been able to have a coffee every morning and enjoy it like before!

I have been sleeping okay. 7-8 hours usually. I woke up this morning and felt okay. Quite good. Went downstairs....still fine. Sun shining which was nice, and not too cold. Got my coffee and went outside as usual to feed my Crow.
Then on the way back with the plate my legs suddenly went. I didn't fall, but got this peculiar awful warm-ish slight pain from lower back right down both legs and they wouldn't obey me. The pain was minimal.
The legs not working was the most horrible thing. I managed to get into the kitchen, but was watching my feet behaving like they were not attached to me and my legs were like rubber. Though the legs weren't numb. I could feel them. They just wouldn't obey me.
Then I desperately needed the toilet. Really really urgently and luckily there is one right next to the back door.
What was running through my head was paralysis and loss of bowel control....that was the most awful sudden shocking thought. Another thought was my legs had gone permanently and how was I going to cope? I could sense I couldn't have walked even with a walker or two sticks in that state, and would need a wheelchair....and how was I going to manage a wheelchair in my lttle house, with steps, tight corners, narrow doors....

BM perfectly normal and as soon as I sat down the bad feeling left my legs. Afterwards there was no trace of the semi- paralysis. My belly and gut was absoluely fine. Normal and healthy.

I felt shaken up and scared, but no more of all that, and the attack only lasted about 3 minutes maximum 5.

I tried to shake it off and got on with a normal day. It didn't come back and I had no other symptoms.
Creeping thought....this sounded like an emergency room situation. Of course I didn't call an ambulance.

This was the most scary thing that has happened yet and it has been a tough year. It came out of the blue. I am now really very nervous it might happen again.

I know no-one can diagnose me! I just wondered if anyone else had had attacks similar to this and what may have caused it?
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
So sorry you experienced that, @Wolfcub and that now, you additionally, have understandable concern and anxiety about it.
And even just a lot of confusion over the unknown.

It sounds like something that I do get at varying intervals of time, and though they have been difficult and scary, I have not had resultant paralysis or attack .

Perhaps, write down for yourself, a very specific list of the symptoms yu had, when it occurred,
and for how long?
To have a comparison if it happens another time?

And watch yourself carefully for any other symptoms, you might experience in between?
Circulation problems?
You noticed no precursors at all?

I hope it will Not recur and will be one of those mysteries we wish we had an explanation for, but that hopefuly none will be needed.

hugs for you.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
Maybe a problem with blood flow? I had a period where some types of exertion would do something to my blood flow (pooling in legs?), and I'd feel like I was going to black out (actually did black out once). Sitting or laying down would make it pass. The problem went away on its own after a few weeks. BTW, I did go to my GP about this, and he was totally unconcerned.

Another possibility is that a nerve got pinched or twisted by some particular movement you made (without noticing), which temporarily blocked signals.

Unless it happens again, I wouldn't worry about it. Our bodies do have occasional glitches.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Bless you guys for your kindness. I have been feeling a bit scared of it to be honest all day! What a wuss ain't I?
What helped me a lot was looking at children's wheelchairs.
I found one that would suit me fine if ever the absolute worst thing happened and I couldn't walk. I weigh no more than the average 12-14 year old. The max. weight on one of them was twice what I weigh almost!
I found ramps, gloves, parts, pneumatic tyres, sports style ones, cool-looking coloured ones, low seats, ones that would fit through my doors.... So that helped the sudden fear and I knew I could adapt if I had to.
They weren't as expensive as I thought either.
@Wishful I wonder if it was blood flow. Last night I got a "frozen head". It went completely numb after falling asleep on the floor for 20 minutes, then felt icy. I thought it was funny at the time.....brain freeze.

Thanks @Shoshana I will carefully think about what I was doing just before it. I'd only been awake 20 minutes, had done a quick wash, brushed teeth, came down, dank half a coffee, took Crow's little sandwich out. But as I bent to put it down, the top fell off it. (Koori likes his sandwich soaked in water! So that makes it mushy and unstable) So I bent again quickly from the waist to put the top back on (no pain doing that.)
Maybe it was that move.
I was feeling well otherwise. Better lately in fact. Today just scared me lots.

:hug: much appreciated @Hufsamor So it happens to people you know? And has done for Shoshana too...

My brain CT was fine. Oh well. Maybe just a glitch
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
That was a good coping tool, in my opinion, for you to look at those items, (small, lightweight wheelchairs, etc)
so you know they exist, just in case of worst-case scenarios, @Wolfcub

even though "worst-case scenarios" , while they are one of countless numbers of possibilities,
are not usually the actual results of anything.
But it helps our minds, to have some "plan B's, I think.

Excellent thinking of the things you did just prior. Different ways of doing those actions, might be all that is needed, or might be a BIG help, in general.
Possibly you got up from sleeping and into actions, too quickly? and that sudden bend over, etc... ?

Still, regardless of possible causes, these experiences aaaaaare scary!
(We are not wimps, we have normal reasons to get scared. And being scared, might be a sign for us to think more carefully about how we do things, etc.... it's one of our survival tools? )
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
@Wolfcub , I have had what I call my legs just giving out from under me. Sounds familiar!
This for me was when I am getting up in the night because I suddenly needed to go to the bathroom from a full on sleep. It was scary, I posted it on here, somewhere. I would have thought with all the Fibro and neck pain I have there was never any pain when my legs went out!
It has happened less and less in the last few months.
It was happening more when I just got out of the hospital last year.
Bless you! That is so scary! and I am impressed at your resilience in just finding a kid's wheelchair!
Go wolfcub!
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Yes I thought of a kid's wheelchair (if needed) because I couldn't bear the idea of having to be institutionalised for the rest of my life. I live alone and no helpers. So it would have to be super light, self propelled but maneuvrable (have I spelled that right??) and small for my little house, yet would work outside on this rough lane. A sports one would be best. And brakes that are easy to reach because there are a lot of slopes round here.
Hopefully I will never need it. But it's there if I ever did.
The rest (toilet/washing/food prep/etc etc) I would just have to problem-solve. I would find a way.

I am sorry you also got that similar thing happen with your legs @jesse's mom I am glad it has happened less and less to you.

The "pain" I felt wasn't even really "pain"....more like a creeping weird melting discomfort than pain.
 

Moof

Senior Member
Messages
778
Location
UK
That sounds really scary! I wonder if you ought to see your doctor about it? Most likely it was a brief nerve compression or miscommunication that'll never happen again, but it should probably go on your medical notes anyway.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I'm feeding my great tit.
I've read they are very clever birds, you might train them if you are patient.
But here, the bird is training me:)
He shows me, very clearly, what he wants for breakfast, and what he doesn't want...

Happy to learn both your feets and your crow is ok
Yes @Hufsamor Great Tits are nice birds, and quite friendly. They like seeds don't they?
Do you get Robins in Norway? We have them here. Tiny Robins (unlike the ones in US and Canada) They are incredibly friendly, very intelligent, and never forget you. Robins are greedy and will eat mostly anything
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I'm okay but....
Does anyone know if you have a TIA (transient ischemic attack) does that usually affect only one side, or both sides?
 

Hufsamor

Senior Member
Messages
2,786
Location
Norway
Yes @Hufsamor Great Tits are nice birds, and quite friendly. They like seeds don't they?
Do you get Robins in Norway? We have them here. Tiny Robins (unlike the ones in US and Canada) They are incredibly friendly, very intelligent, and never forget you. Robins are greedy and will eat mostly anything
Yes, we have, they are beautiful birds.
In Norwegian they are called "red throat."
But I have hardly seen one, while the great tit is my neighbor :)

As for the TIA, I've always learned that one of the symptoms is that it is on one side only....
BUT...I googled now. And it doesn't seem to be a 100%, it MIGHT strike both legs or arms at the same time.
Have you been to the doctor?