Leg weakness. Fear. So very, very fed up.

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Leg weakness. Fear. So very, very fed up.

Postby d75 on May 27th, 2016, 9:16 am

Apologies. This is a bit of a rant...

I'm a very long-time member of this community. I've had BFS for 11 years. Over that time I've had repeated flare-ups of fear of ***. That has resulted in numerous neuro visits and two EMGs.

Both were fine.

Every time I've come out of the panic telling myself: never again. Just live with the twitching. Move on.

Then I'll get some sort of perceived weakness or clumsiness and bang, it's back again.

It's back again.

My right leg is weak, I'm pretty sure. Not massively weak. But weak enough that I feel it constantly. Slightly unsteady on my feet, slightly unable to move quickly and smoothly.

When I lie on my back and lift both legs in turn, I can only lift the right one for a second or so before I get significant pain throughout my thigh. I don't find this a comfort - to me it feels like exertion pain rather than a trapped nerve or impact injury or whatever.

It's only been going on a couple of weeks but, once again, the fear is the only thing I can think about.

I first noticed the problem playing soccer. The leg just felt heavy and tired towards the end of the game. It went away for a day. I played again. The same thing happened only this time the feeling stuck.

I tried to play again this week and I just felt everything was off. I still managed to run and kick and whatever, it just didn't feel stable or perfectly co-ordinated.

I went to a GP, who did a basic strength test or two and wasn't concerned. I mentioned the anxiety and she seemed more concerned about that.

But they weren't very sophisticated tests, there weren't many of them, and of course I'm left thinking it's just too early for such crude tests to detect what's coming. All I know is that my leg constantly feels 'off'.

I try to tell myself I've been here before. But my brain tells me I've not been here before. It's telling me this is actually weakness, which is having an impact on things I do.

I try to tell myself I've twitched for 11 years. But my brain points out that just because I've not had *** in the past, that's no guarantee I won't get it in the future.

I don't know how many people use this forum now.

I don't really know what I'm hoping for someone to say.

I just wanted to vent. So if you've read this, thanks for listening.
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Re: Leg weakness. Fear. So very, very fed up.

Postby Yuliasir on May 27th, 2016, 12:50 pm

Well, do you really think the strength tests should be numerous and sophisticated? Hand strength test is just a puch against the hand of a doctor, leg strength test is about the same, grip test is judt a grip around the doctor's finger. That's so.

As you remember, MND hallmark is FAILING NOT FEELING. You just slightly feel that your leg is unstable. Most probably your problem is blood sirculation - this happens much more frequently than MND.
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Re: Leg weakness. Fear. So very, very fed up.

Postby d75 on May 28th, 2016, 5:31 am

Thanks very much for the reply. In the past I've always ended up thinking perceived was just that - completely in my head. This is different as I'm quite sure it's something. I'm just not good at all at accepting that 'something' might be other than ***.

Googling 'muscle weakness no pain' obviously doesn't help!

The doctor thought I might have done something to my hip, and I do have some sort of deep bruise there but I'm pretty sure I did that after the symptoms started and in any case it seems unlikely it would cause the whole leg to be unstable.

Thanks again, really appreciate it.
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Re: Leg weakness. Fear. So very, very fed up.

Postby leroyb on May 29th, 2016, 9:36 am

I share your opinion of the strength tests. You don't lose use of your muscle overnight in most cases.
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Re: Leg weakness. Fear. So very, very fed up.

Postby d75 on May 31st, 2016, 9:57 am

Yuliasir wrote:As you remember, MND hallmark is FAILING NOT FEELING. You just slightly feel that your leg is unstable. Most probably your problem is blood sirculation - this happens much more frequently than MND.


Hey Yuliasir, if you're still around - the only pain I've really noticed is a sharp, 'stretched' pain in my upper thigh (inside and outside) when I raise my leg from a lying position (a sort of straight leg raise).

Weirdly it only hurts when it is very slightly bent, not if I make an effort to 'lock' it completely.

I get the same pain if I stand on the opposite leg, raise my bent right leg, then try to extend it below the knee.

I'm guessing (hoping) that sort of pain suggests something other than *** but obviously I'm not sure. Seeing a neuro tomorrow anyway.
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Re: Leg weakness. Fear. So very, very fed up.

Postby AndyTwitchalot on June 2nd, 2016, 12:44 pm

Hey-- also a longtime twitcher hanging around here right now.

Keep in mind that you have something weird going on with your muscles. You have a medical condition, whether or not it's clearly named or understood by medical professionals, that causes weird symptoms in your muscles. One of the symptoms is 11 years of twitching. Another one of the symptoms may be leg weakness, especially after you've been using it a lot, like in a game of soccer.

The good news is that it's mild weakness. You can feel it, but it's not enough that a doctor was concerned about it.

You know, I know and the doctors know that it isn't ALS. If you were showing symptoms of ALS for 11 years, you wouldn't be out on a soccer field.

You have something wrong with your muscles, and it sucks. But it's hard enough to deal with a medical problem with your muscles as it is; do your best not to make it worse by worrying and causing anxiety. Take it easy, rest it for a bit, and continue living. This isn't the first or last time this problem will interfere with your life, so try to use your "fed up" feelings of frustration to power through it without getting bogged down by fear.
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Re: Leg weakness. Fear. So very, very fed up.

Postby d75 on June 3rd, 2016, 7:42 am

Hey Andy,

Thanks for that and nice to see another old-timer!

(EDIT: Just seen your thread about your diagnosis - really sorry to hear that and wishing you well. Noticed from a quick google your condition can be stable for many years at a time, and it's so important you have so many good things in your life. I feel really bad having written all this moaning without having seen what you wrote about yourself.)


Yeah, I'm trying to tell myself all that. The twitches aren't even particularly bothering me right now - my leg is twitching but not really more so than usual and I'm okay with that.

The problem of course is that I don't think I've had *** for 11 years, I just think I've developed it, now, separate from my previous BFS.

Sadly that's how my brain seems to work.

I've been to see a leading neuro who did more test and reflexes and other stuff and couldn't see much wrong and thought it most likely I'd just torn a muscle somewhere. Which you'd think would be very reassuring but I'm so very sure there's some weakness and bad coordination and I just don't seem able to shake that fear that people have just looked at it 'too soon'. Can't help feeling tests like squatting and hopping might not show something up.

He did say to me: by the time you feel the symptoms, I'd be able to spot something. And maybe not something you'd expect, but something somewhere. I keep trying to focus on that.

I'm going to go back to a therapist who gave me some very useful CBT about health anxiety a couple of years back but I'm also sure there's something going on with my leg and that makes it hard to get the most out of the therapy and it's just incredibly, incredibly depressing.

Sorry again if this comes across as utterly miserable and thanks again.
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Re: Leg weakness. Fear. So very, very fed up.

Postby d75 on June 21st, 2016, 11:13 am

So, a quick update.

Been to a physio, and there is clearly some issue with my hip being a bit pinched or worn, and also some sort of positional flaw, possibly caused by the way I've been walking or sitting or some such.

To cut a long story short, my leg isn't perfect and needs some work to rebuild strength.

After some rest and some physio exercises, though, it has clearly improved a little bit from where it was.

There is something wrong with my leg. But I'm now pretty much sure It is not ***.

If nothing else, I hope this serves as some sort of cautionary tale. It's now 10 years since my first bout of huge anxiety caused (initially) by twitching. The fear disappears for years and then comes back. Each time, without fail, I decide that this time is different.

I forget everything I've learned.

It is a fear that can (and has) destroyed relationships, drained me of joy and empathy, and could quite easily become the story of my life.

Who wants that to be the story of their life?

So I'm going back to my psychologist and focusing on the anxiety aspect for a while. Because health-wise, well, none of us live for ever, and something bad is going to happen some day. But maybe not today. That's really what I have to (re-)learn to accept.

All the best to you all, and thanks again to Andy and Yuliasir. Your replies meant a lot, and helped a lot.
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Re: Leg weakness. Fear. So very, very fed up.

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