New to Forum: Seeking BFS Reassurance

[johnnytuna]

Hi, I'm new to this forum - hope some of you can reassure me.

I've had BFS since 1998. Started suddenly after a couple of days illness whilst abroad - random twitching all over my body - literally anywhere I have muscles !!. Very worried, saw neuro in 2000 after exhaustive blood tests at GP's. He did basic strength tests, reflexes etc & quickly told me the condition was benign. Offered beta blockers to reduce symptoms, but I refused since quality of life was ok. (I'm 45, exercise a lot, am very fit etc).
Symptoms unchanged (got used to living with them) until 4 weeks ago. Was wringing out a dishcloth with left hand, when I relaxed my grip top of my thumb twitched several times (very noticeably).
Condition persists - every time I grip something with reasonable force the top of my thumb twitches several times, the only time it doesn't is if I repeat the pressure immediately - it's almost as if the thumb needs to rest before it will twitch again !!
This is pronounced & is annoying and worrying me - any offers ??

 

[owingDuckWhistler777]

I used to get this too - it'll pass!

David

 

[sherlockholmesz2]

I get this sometimes in my right hand too. No worries.

 

[Selena647]

I've been having that same thing happen in my thumb and index finger lately. I think my symptoms may be flairing up right now. I've been getting A LOT more twithching lately....like I had when this all started 6 mths ago.

My point it.....lots of us have this symptom and it will pass!

Barb

 

[HaleyHH]

John,
Like you, I have been suffering from BFS for a long time (since 1997). My symptoms have drastically improved in the past five years, but I still find that my hands (& esp. my left thumb) have a mind of their own sometimes. I especially notice it after gripping (like opening a pickle jar or something), but occasionally my thumb and/or forefinger just start to jump--purely for pleasure, perhaps? Yes, it is pronounced, but usually it lasts for less than a minute at a time. After a few hours or days, it seems to wind down. I still twitch, too, and have a lovely assortment of the other symptoms, but they are nothing like they used to be ). I've heard this can hang around for 20 years or more, but like you, my quality of life is no longer affected, so I look at it as more of an annoyance now. Hope this helps, and have a great day!
Lisa H.

 

[usysparawl]

I posted about this same topic last week. Thumb twitching and thumb jerking are scary, but . . . VERY common. Both my thumbs have done it.

P.S. If you look up benign twitching (I don't recommend it due to the fact other things might pop up), it says the CALF, THUMB and EYELID are most common areas.

Peg

 

[johnnytuna]

Many thanks for the responses - I'm more relaxed about it now. I've read a lot of posts since discovering this forum and it is becoming clear that this syndrome (BFS) affects a lot of people, but that the symptoms can be quite varied - when it first began to affect me I really thought I was on my own.
If what I write can put anyone else's mind to rest, then great.
As I've said earlier, it all started in 1998. I was on holiday in Tenerife & fell ill for a couple of days - nothing severe, just generally 'low' and achy etc.
On day 3, feeling fully ok, I was lying on a sunbed when part of my left pectoral suddenly jumped into life - it was pronounced and quite bewildering, had never happened before. A minute or 2 later, my left tricep did the same, followed by the muscle just above the right knee. All quite painless, but very obvious.
Spent the rest of the holiday in a mild state of worry, twitching was constant and random, some fascics mild, some pronounced. Probably like you all, I pored over textbooks etc etc when I got home & made the inevitable link with MND/ ALS etc - no mention of a benign syndrome at that point.
Began a cycle of worry, constantly testing my strength, fitness etc. (I exercise and play sport a lot anyway), rationalising that I must be ok, then descending again - dark moments, better ones etc.
Got to say that I'm pretty strong minded & didn't let it rule me no one guessed I had a problem but the worry was constant.
Doctor hadn't seen anything like it (he said, but the darker side of my mind believed he was just saying it and leaving a prognosis to a neuro etc.). Every blood & general test possible was done & all ok - but when I asked him if that then ruled out Neurological damage he said no - cue more worry.
Only occasionally really affected lifestyle, once my left bicep was twitching so violently and so frequently that I had to drop out of a badminton match, I just couldn't face it. The event lasted around 4 or 5 hours - a bloody nuisance.
Once also my left quadricep vibrated and twitched so severely and for so long that it was mildly bruised the next day.
When I saw the neuro, my right bicep twitched as I stripped off & he saw it, his only comment was 'oh, how annoying' - the manner, though, in which he said it told me he wasn't concerned.
He ran thro' what I assume are standard tests (strength, reflexes) and told me I definitely didn't have MND, my condition was benign.
He offered me beta blockers (I think) to suppress the twitches, but I decided (quickly) that I didn't want to take medication unless I had to.

Since then the twitches have been my constant companion, sometimes severe, other times minor - sometimes they recede, but always return.

It is not a problem to me, I live with them comfortably. Other than having very occasionally to back off a golf shot because a hand muscle decides to twitch, I don't let them affect me.

The reason I asked about thumb twitching just after exerting pressure was that it was new and didn't follow the pattern of twitches I have hitherto had.

As well as twitching, I also experience mild aches sometimes and also minor numbness, especially in the ball of my left foot - none of it is a problem.

If it helps anyone out there - put faith in your neurologist - if he says the symptoms are benign, you must believe him & begin to live properly, don't let it rule your life.

I'll certainly visit the forum from now on - I'll let you all know when I can grip hard again without my thumb dancing afterwards !

Cheers.