Fasciculations when are they worst for you-Newbie asking

[dragonlibra]

I know everyone is different but I'm curious about how mine are felt as compared to others here.

During day when I sitting in office chair I rarely feel. Though late in afternoon mid back pain stiffness.

Worst at night in lounge chair. Fingers, upper arms, butt, quads. In bed sometimes at night. Then I'm twitching away in the morning. Not as bad as night though. More hand numbness and tingling nights & first thing mornings. It's like worse when pressure on spine.

So far not much muscle spasms. Just painful joints.

Any meds for the the twitching? And how effective?

Thanks.

Rita

 

[trfogey]

There are some meds that the neuros will prescribe, but I've rarely heard anyone say that the benefit outweighed the side effects (would you rather twitch some or sleep all the time?). Stimulants such as caffeine will definitely make them worse, so plan your afternoon and evening beverages accordingly. If your fasciculations are disturbing your sleep, prescription sleep aids might help, but make sure that your neuro clears it with regard to your other ALS meds (if any) and your respiratory status.

Anxiety and hyperawareness also can make fasciculations seem worse than they really are -- you don't notice them as much when your mind and/or body are occupied with other activities, do you? You may find that allowing a bit of time to adjust to your "new reality" may do the trick for you.

Hope this helps. Sorry you had to join our little club.

 

[dragonlibra]

Yeah I'm sure this being the diagnosed week sure didn't help. Thanks.

 

[dragonlibra]

I'm disappointed at lack of response to this ?. I'm new to this monster. Deodorant got a bigger response. Scared. Depressed. Docs been little help so far. Hope ALS clinic Thurs is a help. I will confess to being an impatient person.

Sorry to whine. You all are great here & as my hands go I know tremendous effort it takes many of you to respond.

I found the thread on SmartNav great and am considering ordering instead of dragon speak.

 

[olly]

hi rita.
it is the weekend and it tends to be quiet on the forum,you hopefully will get more answers during the week ahead.
i think trfogey has covered it in his post.
see your gp,they will be able to prescribe something.
take care.

 

[dragonlibra]

Thanks Olly. My Droid wanted to change Olly to Illuminated.

Guess I'm used to online political forums where action is fast & furious.

 

[Ms. Pie]

Hi Rita! Sorry I didn't respond sooner. When I first was diagnosed I felt them quite a bit. Now I don't pay much attention to them. I assume it's a stress thing. You'll "plateau" and things will calm down a bit. Try to stay positive Sweets. Do you have anything from your doctor for stress. Mine perscribed Xanax which makes me feel foggy so I just take 1/3 before going to bed and that helps a lot. I was extremely stressed when I was first diagnosed and felt the need to take 1/2 when things seemed overwhelming. Keep us posted as to how you're doing.
Hugs,
Marta

 

[momofsixkids60]

Rita,

There are a LOT of us who try to avoid these sections . I will only look at them once a qualified member has poseted; such as, Allen.

I have fasciculations in very limited areas. I have them in my feet, where I can not feel them but watch the creepy crawlers go mad. I also have them in my calves. The ones I do feel are on the right side of my back where your bra is and on my right outer calf muscle. The ones I do not feel. Is where the muscle? Is going away. And yes it was deteriorating way before the fasciculations.

There are meds out there and yes I am on plenty; but to be like Allen, sometimes the side effects are worse than the twitching.

Good luck and make sure you discuss it thoroughly with your neuro.

And, sorry you had to join,

Kimberly

 

[sadiemae]

And Rita, as long as you feel the fasticulations, the muscle is still alive. As they(the muscles) die off, so do the fasticulations.

 

[Alyoop]

I have them all over, all the time ( benign). I am a bit whacko, but after 4 years of them, I quite enjoy the feeling. Like Allen says, you get used to then and have to think about them to notice.

 

[Bhappy]

Rita,
My twitches come and go in a variety of places. I've learned to ignore them more as time has gone by. Shortly after I was diagnosed, someone (I can't remember who) on the forum said, "learn to love the twitches because as long as their twitching, the muscles are still working."

I guess I decided to accept that quote and see it as the muscle saying, "Helloooo! I'm still here!"

 

[dragonlibra]

Hi Rita! Sorry I didn't respond sooner. When I first was diagnosed I felt them quite a bit. Now I don't pay much attention to them. I assume it's a stress thing. You'll "plateau" and things will calm down a bit. Try to stay positive Sweets. Do you have anything from your doctor for stress. Mine perscribed Xanax which makes me feel foggy so I just take 1/3 before going to bed and that helps a lot. I was extremely stressed when I was first diagnosed and felt the need to take 1/2 when things seemed overwhelming. Keep us posted as to how you're doing.
Hugs,
Marta

I have xanax from pcp take 1 at night so I don't wake at 4 or 5 which I consider the dark times of the soul.
As to dang neuro, at EMG yep you have ALS here's Rx for Ritulek. No discussion about effectiveness except for liver monitoring. If it wasn't for here I wouldn't't have a clue about it. No discussion if I needed anything. Just off to next patient. Be curious how good his ALS clinic Thur.

Rita

 

[dragonlibra]

Rita,
My twitches come and go in a variety of places. I've learned to ignore them more as time has gone by. Shortly after I was diagnosed, someone (I can't remember who) on the forum said, "learn to love the twitches because as long as their twitching, the muscles are still working."

I guess I decided to accept that quote and see it as the muscle saying, "Helloooo! I'm still here!"

Thanks that really helps.

Rita

 

[Ms. Pie]

Rita, I didn't like my first Neuro for the fact that his answer to my questions was "Get your affairs in order." That was it. And that was the last time I saw him. My 2nd Neuro wouldn't call me until my husband pitched a fit after over a month. I now have a Neuro that I feel cares about me. I learned in ALS Support Group that we need 3 doctors on your team. Your Primary Care Physician, Your Neurologist and your Pulmonologist. I just got a starting point with my Pulmo and will meet with him probably every other month to measure my breathing, I'll meet with my Neurologist every other month as well just to monitor the progression and just talk about concerns, and my PCP whenever I need a good cry or have a cold or need a prescription. She's the best. Anyway, I recommend surrounding yourself with doctors you trust and feel confident in and cared for. Makes a world of difference.

Also, I really get a lot of good and useful information from my ALS Support Group and also the good people here.

 

[susanf]

Rita,
Set up a meeting with an ALSA rep, like Marta said they will direct you. I like my neuro however he "forgets" so I do a lot of research here (thanks Allen).
I know this is so much info being thrown at you.
Susan