Bad days

[bobajojo]

edado69,

I'll jump in on this because I'm nearly 3 years into this madness and having the worst flare-up since the start. Both my biceps have been fluttering for 5+weeks. They have not stopped for a second. I can just look at them bouncing in several areas of the muscle. Little twitches, big twitches, machine gunners, all going at once. Its very distressing. In addition to that, both my shoulder girdles have been acting up as well but those seem to be related to my body position. So, when I turn over in bed for example, one of my shoulder girdles will twitch for 30 seconds or so. If I turn to the other side, the other one will twitch. My tongue, chin, both eyelids, thighs, abdomen, legs, have all been firing away randomly. But the weirdest one for me is my testicle. Its actually twitching and has been nonstop since mid-November! So frustrating. So... I understand your frustration. Hang in there. -Matt

[edado69]

edado69,

I'll jump in on this because I'm nearly 3 years into this madness and having the worst flare-up since the start. Both my biceps have been fluttering for 5+weeks. They have not stopped for a second. I can just look at them bouncing in several areas of the muscle. Little twitches, big twitches, machine gunners, all going at once. Its very distressing. In addition to that, both my shoulder girdles have been acting up as well but those seem to be related to my body position. So, when I turn over in bed for example, one of my shoulder girdles will twitch for 30 seconds or so. If I turn to the other side, the other one will twitch. My tongue, chin, both eyelids, thighs, abdomen, legs, have all been firing away randomly. But the weirdest one for me is my testicle. Its actually twitching and has been nonstop since mid-November! So frustrating. So... I understand your frustration. Hang in there. -Matt

Matt,
Always nice hearing from you. I am delighted you added your voice to this "diary". I remember that almost 7 years ago I had not a clue of what was going to happen - nor I do now - and I would have loved to find some story about "what next?"....
I can share all you have been experiencing (my twitching to the left girdle being more similar to your biceps), apart from the genital "bit"!
How do you manage to sleep? I am having troubles.

[edado69]

edado69,

I'll jump in on this because I'm nearly 3 years into this madness and having the worst flare-up since the start. Both my biceps have been fluttering for 5+weeks. They have not stopped for a second. I can just look at them bouncing in several areas of the muscle. Little twitches, big twitches, machine gunners, all going at once. Its very distressing. In addition to that, both my shoulder girdles have been acting up as well but those seem to be related to my body position. So, when I turn over in bed for example, one of my shoulder girdles will twitch for 30 seconds or so. If I turn to the other side, the other one will twitch. My tongue, chin, both eyelids, thighs, abdomen, legs, have all been firing away randomly. But the weirdest one for me is my testicle. Its actually twitching and has been nonstop since mid-November! So frustrating. So... I understand your frustration. Hang in there. -Matt

Matt,
Always nice hearing from you. I am delighted you added your voice to this "diary". I remember that almost 7 years ago I had not a clue of what was going to happen - nor I do now - and I would have loved to find some story about "what next?"....
I can share all you have been experiencing (my twitching to the left girdle being more similar to your biceps), apart from the genital "bit"!
How do you manage to sleep? I am having troubles.

[edado69]

edado69,

I'll jump in on this because I'm nearly 3 years into this madness and having the worst flare-up since the start. Both my biceps have been fluttering for 5+weeks. They have not stopped for a second. I can just look at them bouncing in several areas of the muscle. Little twitches, big twitches, machine gunners, all going at once. Its very distressing. In addition to that, both my shoulder girdles have been acting up as well but those seem to be related to my body position. So, when I turn over in bed for example, one of my shoulder girdles will twitch for 30 seconds or so. If I turn to the other side, the other one will twitch. My tongue, chin, both eyelids, thighs, abdomen, legs, have all been firing away randomly. But the weirdest one for me is my testicle. Its actually twitching and has been nonstop since mid-November! So frustrating. So... I understand your frustration. Hang in there. -Matt

Matt,
Always nice hearing from you. I am delighted you added your voice to this "diary". I remember that almost 7 years ago I had not a clue of what was going to happen - nor I do now - and I would have loved to find some story about "what next?"....
I can share all you have been experiencing (my twitching to the left girdle being more similar to your biceps), apart from the genital "bit"!
How do you manage to sleep? I am having troubles.

[edado69]

edado69,

I'll jump in on this because I'm nearly 3 years into this madness and having the worst flare-up since the start. Both my biceps have been fluttering for 5+weeks. They have not stopped for a second. I can just look at them bouncing in several areas of the muscle. Little twitches, big twitches, machine gunners, all going at once. Its very distressing. In addition to that, both my shoulder girdles have been acting up as well but those seem to be related to my body position. So, when I turn over in bed for example, one of my shoulder girdles will twitch for 30 seconds or so. If I turn to the other side, the other one will twitch. My tongue, chin, both eyelids, thighs, abdomen, legs, have all been firing away randomly. But the weirdest one for me is my testicle. Its actually twitching and has been nonstop since mid-November! So frustrating. So... I understand your frustration. Hang in there. -Matt

Matt,
Always nice hearing from you. I am delighted you added your voice to this "diary". I remember that almost 7 years ago I had not a clue of what was going to happen - nor I do now - and I would have loved to find some story about "what next?"....
I can share all you have been experiencing (my twitching to the left girdle being more similar to your biceps), apart from the genital "bit"!
How do you manage to sleep? I am having troubles.

[bobajojo]

edado,

Yeah, laying down in bed is the worst. I think I twitch the same all throughout the day but I'm just so aware of them all when I'm still. My twitches, especially the hotspots, continue during sleep. I've actually dreamed about my tongue twitching, or my shoulder twitching and instantly woken up to them actually twitching so I'm sure they were happening as I slept. For me, I'm usually so tired by the time I go to bed that I can just let the twitching go and fall to sleep. My biggest problem is that my wife gets up at 5AM and her alarm clock wakes me up. Then I become a human popcorn machine and can't fall back asleep. So I lay in bed from 5-7AM just twitching away.

-Matt

[edado69]

edado,

Yeah, laying down in bed is the worst. I think I twitch the same all throughout the day but I'm just so aware of them all when I'm still. My twitches, especially the hotspots, continue during sleep. I've actually dreamed about my tongue twitching, or my shoulder twitching and instantly woken up to them actually twitching so I'm sure they were happening as I slept. For me, I'm usually so tired by the time I go to bed that I can just let the twitching go and fall to sleep. My biggest problem is that my wife gets up at 5AM and her alarm clock wakes me up. Then I become a human popcorn machine and can't fall back asleep. So I lay in bed from 5-7AM just twitching away.

-Matt

Same here Matt! But, 5 AM is something that started for me 2-3 years on (I cannot recall exactly). Before that, twitches were no bad enough to affect my sleeping. And I was such a deep sleeper! (still I think I am considering what's going on with my muscles!!!).

[edado69]

Left forearm and left leg are having huge twitches today. Very bothersome stuff.

[nrwtwitcher]

Dear edado. It is impossible for me to sleep because I have also extreme twitches during the whole night. I am twitching since 6 month now. The last 3 weeks my twitches becomes more worse than ever....

[edado69]

Dear edado. It is impossible for me to sleep because I have also extreme twitches during the whole night. I am twitching since 6 month now. The last 3 weeks my twitches becomes more worse than ever....

I can say that also when my twitching is inceadibly florid (you can see my legs twithing under the jeans or my shoulders, forearms, and biceps under a jumper to make it clear...), after 2-3 days of very little sleep, I can sleep. So, I am sure the same may apply to you as well. Fear, anxiety, may be a challenge and we can just try to control them. I still do not think they are the cause, but rather associated symptoms.

[Little Lost]

Excuse me for butting in but just wanted to say how good to hear someone else say that "Anxiety isn,t the cause of BFS"....fed up of anyone I try to explain it to lecturing me that its just anxiety.....I have suffered this thing for years now and I feel all my efforts to overcome it are belittled by such people saying " Oh it is just anxiety" ... a saying they often accompany with a smug head to one side and pursed lips. BFS cant be summed up by one simple word or one explanation....

That is why I come to this site, bad days are awful and noone outside of here really understands. Its not just the fear about ALS, it is a fear of BFS in its own entity. Like you I can see my fasciculations through my trousers etc. People think it is funny or sometimes as my hairdresser told me once " Kind of cute......f..ing CUTE"....lucky I wasn't the one holding the snippers. ( sorry about language Mr Administrator will try harder honest).

So thanks that one comment has cheered me up as I sit up here in Scotland, twitching, feelling like I have more hot spots than the sun tonight.

Hx

Twelve highlanders and a bagpipe make a rebellion.

[nrwtwitcher]

You can see my twitchers under my clothes too. They are so extreme. And I am cramping every night... I cannot believe that this should be benign... in my case of course... really bad days and nights

[edado69]

You can see my twitchers under my clothes too. They are so extreme. And I am cramping every night... I cannot believe that this should be benign... in my case of course... really bad days and nights

Both have been experienced by me on a regular basis.

[edado69]

Over the last 3 days I had at the best 5 hours of sleep per night. Last night it was 2 hours only. Twitching has been amazingly florid and powerful. I know I have used this terms in several occasions, but this condition is continuing to impress me. We are to the point that pretty much at any given moment anyone could observe my twitches also under the clothes in several different places. To the point that I almost feel scared that people may see it.
My wife does, of course, but I am used to the idea.
Sweating at night has been also present. I thought about Morvan Syndrome, but clearly this is not the case either.
I have to work and I take the life how it comes.

This time it really feels I am twitching away. It is a total full body non-stop. I have never been as scared before. Never.

[edado69]

FROM BAD TO WORSE

Yesterday evening, back from work, I had a relaxing hot bath.
I was watching TV with the kids when my arms started cramping. Whet I mean cramping, I really do mean cramps to the point I could not stretch them. First the right, then the left.
I got really scared. Once of those things totally out of the ordinary.
I had to show my wife. I didn't want to, but I was shocked.
She knows, as she can see, how the twitching is going.
She was in tears. I was shocked.
Another night with no "break".
I have to go an be seen again. Things have changed. There is no question about this.
We have to know what we are up against so that we are prepared.
I believe that my "BFS" days are finished.