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shakes and twitches

PostPosted: August 27th, 2002, 10:03 pm
by Debbs
Hey this is a great site full of info! I can relate well to the shakes and twitches, but how is one diagnosed for bfs ? is it simply thru a neuro ? I have no real idea if I have bfs yet, but I twitch in the mornings and at night mostly while at rest all over my body but mostly in my arms and legs, sometimes feels like my body is having a party but forgot to invite me....I have a lot of fatique, if I excercise like walk for 30-40minutes I come home and sleep, my muscles are sore sometimes to touch and feel like ive gone a few rounds in a boxing ring , using a hairdryer tires my arms out and if I lift my arm higher my arm shakes, I have no numbness at all in my body,but I do feel weak,always stiff the next day after excersise, doing squats caused my muscles in my legs to acheand twitch, so I cut them out...Does anyone else relate to any of this ?Does it sound like Fibro to you ? Same things happened several years ago, I had an MRI but showed nothing, the Neuro said I was simply anxious !!!! sent me home told me to relax :( Could I be so stressed that my muscles twitch ? is that a possibility ?? Has anyone had any success using magnesium to relieve the twitches ?

PostPosted: August 28th, 2002, 12:44 am
by Arron
Hi Debbs, yes, what you described "sounds" like BFS or Fibro. They both have overlying symptoms and some believe they are one in the same. The rule of thumb with this stuff that any neuro will tell you is that twitches without the presence or "real" weakness (not perceived weakness) is a benign condition, most likely BFS. An EMG is the ultimate test that will show for sure whether you have anything nasty going-on or not. I get the tremors in the limbs too, especially when doing anything or holding weight in my hands and such, as do many other people with BFS. Stress and anxiety can cause a LOT of strange symptoms but I think that some stuff (like BFS) get's blown-off as stress and that most doctors have never even heard of BFS. Hang in there, neuro's know what they are talking about, even if they aren't hip to BFS yet, they know whether it is something to worry about or not. Hope that helped. :-)

PostPosted: August 28th, 2002, 11:49 am
by SoJerseyMom
Hi, Debbs! I too have twitches, mostly at night, sometimes in the morning. I can identify with the feeling that your body is "having a party". From what I've read here, and heard from my doctor, BFS is diagnosed largely by ruling out other more serious conditions.

I believe I saw a post about magnesium somewhere on this forum. You might check all the other postings under symptom management.

PostPosted: August 28th, 2002, 9:34 pm
by Debbs
Thankyou Arron and SoJerseyMom, I really appreciate your posts. I also have the internal twitching and sometimes a jerking sensation, my concern is that my heart is a muscle and will this twitch too, if everything else is twitching involuntarily will my heart also, that bothers me, did this go thru your mind too ? How long have you both had bfs, and has it gotten better ? Do you have days when there is no twitching at all or is it with you 24/7. I am currently trying the magnesium but I had a weird reaction to that last night so Im hesitant to take it again.

Look forward to your posts

PostPosted: August 29th, 2002, 1:00 pm
by Arron
Hi Debbs, I'll answer your question as best as "I" can. Everyone has a different experience with this BFS stuff though.
The heart twitch; No, it won't twitch. Doctors have said that involuntary muscles are controlled by a part of the brain that isn't affected by any of this stuff, although a hickup is kind of like a huge twitch in the diaphragm, but the heart won't be affected.

I have had BFS for about 18 months and since I was SOOOOOO freaked out when I saw that twitches let to ALS, I started doing serious research on ALS and BFS and found that most text books are WAY wrong about the difference between a "twitch" and an ALS twitch. They are TOTALLY different. Jyst remember an easy rule of thumb. Twitches without the presence or weaknedd is NOT ALS. What they mean by weakness is NOT fatigue "precieved" weakness or weak "feelings". They mean not being able to hold a cup or a tooth brush, or not being able to stand or walk and it is progressive and ONLY progressive. ALs does NOT and can NOT come and go. So if you "feel" weak one day and a couple of days later you feel great and are out running around, that ain't ALS. Also, twitches are a SECOINDARY symptom of the weakness, not the other way around. In other words, by the time you even notice any twitches, the ALS has already taken hold of your body and you WILL be showing some kind of signs of weakness by then.

Yes, we twitch some days 24/7 and other days hardly notice any at all. It really comes and goes and is highly reactive to being tired, stress, anxiety and being ill, which ALL amplify the symptoms.

If you had a strange reaction to magnesium, or ANYTHING, do NOT continue taking it. There is no real know anything that stops the twitches. Some people start taking something and say it has helped while other's have taken the same things and gotten no results at all. I think it is the placebo effect myself, although there is no doubt that anti anxiety meds DO ease the fears and anxiety of fearing the worst which in turn calms you down... when you are calm, the symptoms will be calm (for the most part anyway).

Hope that helped. Have a good one!

PostPosted: August 29th, 2002, 2:44 pm
by SoJerseyMom
I started about fourteen months ago with muscle cramps, mostly in the calves, and occasional patches of numbness or tingling in the legs and face. Twitches came later. Fortunately, none of this is 24/7. It comes and goes. I'd have to say its either gotten better or I've gotten used to it! In any case, I seldom have the numbness that frightened me so much at first.

Interesting question you raised about the heart, Debbs. I had a few episodes of palpitations a couple years ago. Tests showed nothing and it was believed to be stress. But I've wondered if it was related to the BFS. Thanks for clearing that up, Arron!

PostPosted: September 1st, 2002, 9:56 pm
by Debbs
Hey thankyou Arron I felt much better reading your post, it certainly settled down my fears about any thing sinnister going on in my body. I have actually been persevering with the magnesium to alleviate the twitching and guess what !! its working extrememly well for me, Im even sleeping better and my brain doesnt feel so foggy anymore and harldy any twitching..woo hoo..Thanks to Dr Jon who suggested trying magnesium. Ive been reading up and magnesium is awesome for a miriad of things it actually is important for production of seretonin, its great for muscles weakness, tissues, bones, the heart, cramps, twitching, concentration...But to be safe Im seeing a physician in the near future to check everything out :D I think lots of my twitching problems are due to fears in life, and many stresses that are apart of living day to day.And if we are not getting the appropriate rest and nutrition our bodies need, well then is it any wonder stuff happens...We all need to look after ourselves I think, and take time out to smell the roses... :lol:

twitching and body jerks.....BFS??

PostPosted: September 19th, 2002, 7:36 am
by Nigel555
Hi Everyone,

I'm so glad to have found this site it has given me hope cos for about a year now I have had aching arms, hands and all over body twitching and the last few months I am getting a lot of body jerks just as I'm dropping of to sleep or if I'm just laying still in bed, i mainly get them in my legs and arms about 10 a night, so would this also be linked to bfs ?? would love to know if anyone else suffers with the same thing. they are a pain in the butt as they keep me awake then the next day I feel washed out and stressed, and so the more the twitching becomes and then the more I worry. :cry:

I have been worrying myself sick that I may have ALS but after reading all your mails I have a feeling of hope as I work as a butcher and can still lift 45lb boxs of beef in one hand and if what you people say is right if I had ALS I would not be able to do that after one year, would I :?:

I do suffer with a phobia about having something like ALS or cancer and have done for a good few years now, I'm always full of anxiety and stressed out cos of it, cos like most people you start to reserch your problems and "BANG" you have everything under the sun, as the say a little knowledge can be a dangerous thing, ho how true that was for me

Best Wishes to everyone

Nigel UK 8)

PostPosted: September 19th, 2002, 10:05 am
by Arron
Hi Nigel, the jerks you mention are classic Myoclonic Jolts and are no big deal. Everybody get's 'em at one time or another. If you are stressed-out or have anxiety, those jolts can happen more often and what you describe about being constantly worried about your body having something wrong is called "health anxieties" and is actually pretty common. After a year of all of this, you certainly don't have ALS. Sounds like classic BFS to me and if you have lots of aches and pains along with it you might as well have Fibromyalgia or instead of BFS you might have BCFS which all are benign but have different symptoms such as pain, aches and cramps... either way, they are benign. Hey, can you slice me a big fat juicy filet mignon? Love that stuff! Have a good one!

PostPosted: September 19th, 2002, 11:05 am
by Nigel555
Hi Arron

Just wanted to thank you for kindly taking the time to reply to my post it was very much appreciated

meant to say that my eye lid has also been twitching every *beep* day for about 6 months now as well is this part of BFS also? :?

Many Thanks

PostPosted: September 19th, 2002, 11:39 am
by Arron
Nigel... yep, that's par for the BFS course... if you were twitching in your eyelids for that long with ALS, you wouldn't be blinking anymore, that's for sure. BFS is fun, isn't it? :shock:

While falling asleep

PostPosted: September 19th, 2002, 12:10 pm
by Davidd
I'm new the board but certainly glad I found it!

As I am about to fall asleep at night, I feel like my body is short-circuiting...I close my eyes...and then just about the point where I'm about to fall asleep, my calves start going crazy. They don't hurt, but I just get these annoying popping sensation all over the calf muscles...and then I'm awake again! All this started only a month or 2 ago. Unfortunately I feel like a zombie every day because I hardly sleep.

But, I took .5 mg of Klonopin last night for the first time and I only woke up once in the middle of the night and actually slept for 6 or 7 hours which is A LOT for me. Xanax didn't work for me and neither did over-the-counter sleeping pills. So I would try the Klonopin if you haven't already. I can tell you that after a good nights sleep, it is much easier to deal with the twitching the next day.


PostPosted: September 20th, 2002, 1:42 pm
by Nigel555
Hi Dave,

it may be the same sort of thing as mine cos just when I'm about to drop off my limbs jerk only one at a time mind but it can happen about 10-20 a night and like you it keeps me awake and the next day I'm tried to.

have a read of Arron reply to my post a couple above this one

I'm sure it nothing to worry about if it only happens when you are about to drop off

good luck mate

regards Nigel

PostPosted: October 18th, 2002, 4:59 pm
by JudyB
Nigel555 wrote:Hi Arron

Just wanted to thank you for kindly taking the time to reply to my post it was very much appreciated

meant to say that my eye lid has also been twitching every *beep* day for about 6 months now as well is this part of BFS also? :?

Many Thanks

Nigel - my eye has been twitching for 2-3 years now. Sometimes so badly that it goes down my cheek and pulls at my mouth. I thougt it might be bells palsey, but thank God it's not. I notice it more often when i am very tired or very stressed.

PostPosted: October 19th, 2002, 12:30 am
by Nigel555
Hi JudyB

Thanks for repling to my post,

I have had a twitchy eye before but it usally only lasts for about 3-4 weeks but this time its been going on for months as I say.

I have notice from reading other people post's that its commom with BFS.

Thanks again JudyB

best wishes Nigel