The Twitching Scale

[bobajojo]

After 3 years of reading stories on here and talking with other BFSers, it is clear that we have a wide range of symptoms. Some people have just a handful of twitches a day or can even go a day without twitching, while others entire body is in constant twitch mode with no breaks. And ofcourse, others have symptoms other than twitching like buzzing, numbness, muscle fatigue, tremors and cramping.

Where are you on the twitch scale? For me, my entire body is in twitch mode. I get daily hotspots like both my thighs today, the right side of my jaw, and my left bicep (19 weeks now without a minute break). But on top of that, my calves and feet never ever stop, both elbows twitch relentlessly, my thenar muscles pop and flutter at least once a minute, and every other muscle in my body takes turns popping, pulling, or firing off 10 in a row in one spot. When I lay in bed, I average about 20-30 twitches that I can FEEL per minute somewhere in my body.

I get jealous when I read people write on here that they had a good day with twitching. That never happens with me. But then again, I'm sure others get jealous when I write the I have barely any sensory symptoms. I'm sure we all took different paths to jacking up our nervous systems and its created quite a wide range of symptoms. No BFSer is the same, that's for sure.

Just my thought of the day. Feel free to describe your BFS.

-Matt

[Xina535]

I seem to have a little of everything.

Kind:
tiny twitches that feel more like vibrations, buzzing - mainly in face and hands
a big thumper here and there, mostly back and legs
and the knocking kind, that go "knock knock knock" and stop and then start again somewhere else
I am not sure that I get twitches that I can't feel, but can see. I only look for the twitch and see it if I feel it, so if there is one going on that I can't feel, then I have no idea that there is a twitch. Most of the time when I look for the twitch and find the spot and look at it, it stops or moved to a different spot.

Frequency:
When I wake up, no twitching for the few few minutes, but throughout the day, a mix of all the above twitches, about 2 per minute. On bad days, probably 4.
It seems I do not twitch at all or hardly when I am in a hot tub or in the sauna.
I notice I twitch more when I drink coffee that day. Trying to stop that.

[leaflea]

Yes babajo, while I feel for you, I also am jealous of the "just twitching" you have. It is the changing pattern (or lack of a pattern) of vibrations, buzzing, tremors, numbness, and pain that gets to me. I am thankful for the downtimes where I have relatively little of any of the above. Going beserk today though! I get flare ups and would like to determine a trigger. Could be stress and/or lack of sleep and/or dehydration. Can't tell for sure.

[physerv24]

My "constant" twitching is confined to my upper body; both biceps, triceps, forearms, elbows, chest, shoulders and abdomen. Although my legs twitch daily, they are mostly the big jumpers and no more than 2 or 3 times per hour. The upper body is constant and can bee seen from across the room. Not much in the face with the exception of my eyebrows. Unfortunately, I also have cramps that accompany my twitches. Sometimes just a minor jabbing or sharp pain but other times a dull ache that last for hours, especially after a very "active" localized twitching episode.

I also got a few bruises after the EMG, anyone else get that?

[bobajojo]

Physerv,

How constant are they in your upper body? Do you have more than one area going at once? For me, my left bicep has been twitching in one spot for 18 weeks. In addition, my forearms by both elbows are constantly popping in a few areas. If I hold my forearms up to the mirrors I can see the twitches popping up here and there, not one spot but all over. Lastly, I'll get a few pops per minute somewhere else in my chest, shoulders, triceps, etc. So, its pretty *beep* constant. Just wondering if yours are similar. -Matt

[physerv24]

Hey Matt. Yes, constant in my upper body with both biceps and elbows going like gangbusters. With my biceps, the only time the stop is when I flex. As soon as I relax my arm they take off. Don't get me wrong, I am so unbelievable thankful for the negative EMG/NCS, but I had hoped that with that news the twitching would slow down. Not happening. I just try to stay busy and keep moving to get my mind off of it. Triceps just started firing while typing this!

Side note, I don't want to take the tegretol. Have you found any other meds that help?

[bobajojo]

I've tried everything (gabapentin, tegretol, supplements, diet, exercise, muscle relaxers, SSRI's, CBT therapy, meditaion) and nothing has helped.

[physerv24]

That sucks. The one's that bother me the most (mentally) are in my hands. I hate the constant finger twitching.

[nrwtwitcher]

My body twitches also nonstop. Nonstop twitches in my calves and feet. Often in my upper legs and my upper arm (left one). I can see and feel most of these twitches but I have some twitches I cannot feel too. I am sure, that these twitches are not so strong as the other ones. My twitches are like waves and worms, sometimes they are extreme fast. I have multiple twitches every second.

[johnnythejet]

[TwitchyDoc]

When I am on Tegretol, I would say it is like 5-8 series of fasciculations per hour, upper body only. By series I mean a repetitive twitching that will last for a few seconds.
Sites ordered by the severity of fasciculations:
-Shoulders / Arms
-Small hand muscles (FDI)
-Elbows
-Chest
-Abdomen
-legs (as rare as a few times a week)

[bobajojo]

Wow, Docen, so that means like once every 8-12 minutes? I would consider myself cured if my twitching was reduced to that level. My muscles are in constant activity. Pops, flickers, pulls, flutters, thumpers, repetitive twitches, hotspots that go for months. My bicep is still going after 20 weeks straight without a minute break. I may have to go back on Tegretol! -Matt

[TwitchyDoc]

Actually, I counted fasciculations for the last 60 minutes - I got only 2 series (biceps and hand). On the other hand, simple stretching or isometric contraction (such as pressing hand against a wall so that the biceps contracts but does not change its lenght] bring them easily.

[Tohapane66]

Non stop calves and feet, at least it seems that way. Arms come on and off. hot spots come and go and can be anywhere, but fortunately don't seem to last more than a day. One exception is the cursed left foot which can last a long time (not up to your record yet Matt). I would rather have the twitching than the sensory symptoms, especially pain and pins and needles. Sometimes I feel frustrated that I can't lift heavy things without knowing that later I will pay the price with fasciculations and pain in my arms and hands.

I'm kind of getting used to twitches after six months. Being trying out acupuncture and have felt much relief at the time, particularly when I got the cursed left foot hot spot.

[readytocheckout]

I'm about 18 months into this, and to be honest it still freaks me out, and is still getting worse and changing.

Twitch pretty much all over including toes, top and bottom of both feet, shins, calves, thighs, butt, stomach, palms (I hate those), tops of hands (I hate those too), fingers & thumbs, forearms, upper arms, shoulders, neck, chin, lips, nose, tongue (arghh this is awful), scalp - have I forgotten anything !!! I don't go for more than 30 seconds without twitching somewhere. I'm also getting vibrating, hand tremors, buzzing, tingling on my face. My nerves are fried !!! I hate all the face and mouth stuff.

I've had 2 NCV & EMG tests, both clear for MND but indicated PNH & carpal tunnel. I've also had spine & brain MRIs and been cleared of MS. Nothing unusual found in the myriad of blood tests I've had except for quite high ferritin which is now normal again. I even tried a hair mineral test which "found" an abnormal calcium/magnesium ratio, not so sure about the usefulness of a hair test though. EMGs were in Aug 2013 & May 2014.

I have been low in Vit D, I take that everyday now, also take magnesium with amino acids. None of this seems to help.

I started out with calf cramps but I don't get much of that now, except for my feet. I tried to do yoga but had to give it up because of feet and toe cramping, it also gave me sore wrists which I don't need due to carpal tunnel.

So what's freaking me out now then (thought you'd never ask). Despite having clean EMGs I have real concerns about my right arm and hand, I am having forearm twitches and some kind of what might be a numbness which is causing dexterity problems when using the PC mouse, I also have weakness in my right forearm but that has pain with it and my osteo thinks it might be a tendon problem (I hope he's right), the right hand is also quite stiff compared to the left. I'm also getting a lot of tongue burning (or is it a very fast twitch??) and dry mouth combined with a swallowing problem (bulbar EMG was clean). The toe next to the big toe feels weird in my shoe, I can't tell if it feels numb or swollen and it's been about 4 weeks like that.

Yesterday I did a bit more walking than usual and today I'm really paying for it with very sore fatigued thigh muscles. Any exercise or anything that needs muscle strength will bring on the twitching.

I have joint pain in both thumbs, right wrist, and right ankle. The burning over my right ankle is painful. I've lost a lot of body fat except for my stomach (typical !) and my hands look like they're 90yo, my feet are doing the same and I've lost padding in my fingers. I get muscle and what feels like bone pain in arms and legs, and I think I might have developed some TMD. Before BFS started I did not have one single issue from the above list. I haven't even mentioned what this has done to my state of mind, I only have my EMG security blanket to cling to right now, and all you wonderful folks at this even more wonderful website (straight from the heart - thank you)

So as I PM'd to LeroyB the other day, apart from all of the above I'm a very healthy human being lol, but feel totally alien (and sick and worried). I so wish I could just go back to plain old twitching. Symptoms seem to be changing a lot.