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Pain and BFS

PostPosted: October 19th, 2014, 8:29 pm
by reanne2489
Hi all,

I know from reading BFS in a nutshell that aches and pains and cramping often come attached to BFS.

I was wondering to what extent the pain can be felt though? I got a normal EMG result this week after 5 weeks sold of 24/7 twitching in my left leg. Over the past few weeks, however, the pain in this leg has been increasing. My left foot arch and toes feel very sore and tight. I get throbbing/ stabbing aches in my calf and sometimes up the back of my thigh. My left knee also feels weak. I know some of this may be down to my misaligned pelvis, so that is being investigated, but I find it unlikely that my gait would suddenly become an issue just as my twitching began.

Does anyone else experience really bad pain with their BFS? If so what sort of pain do you feel and how do you manage it?

Thank you

Re: Pain and BFS

PostPosted: October 20th, 2014, 3:54 am
by Tweek
It's hard to figure out what you call "really bad pain". Pain sensation are really different from one person to an other. I mean : some people are more sensitive to pain than others.

Here is why pain is normal with BFS. With this syndrome, your nerves are irritated. You have got two types of nerves : motor nerves, and sensitive nerves. When twitches happens, you can bet that your motor nerves are responsible. But why sensitive nerves would be spare ? If you feel pain, your sensitive nerves are having a bad time for the same reason you've got twitches..

Now, do you know what Small fiber peripheral neuropathy is ? Nothing really nasty, do not worry. ... neuropathy
But it looks like what you have (and nt only you : a lot of members of this board might have it too). Sometimes, SFN comes with twitches.

I undergo pains with my BFS. Nothing dreadful, but almost everywhere : back, hands, arms, legs, soles....

Re: Pain and BFS

PostPosted: October 21st, 2014, 7:06 am
by reanne2489
Thanks tweek

I know everyone else's pain barriers are this isn't the kind of pain that prevents me doing anything- i still walk everywhere very briskly and can run etc, but my leg literally just aches, or if i sit on the sofa with my legs crossed or up near my chest or i squat or kneel, my feet will go into cramp.

I have been experiencing these kind of aching, cramping, sometimes stabbing or weak-kneed sensations for 2 weeks solid and twitching now for 6 weeks solid..

Despite my clean EMG after 4 weeks+ of twitching, there is always the anxiety that it was too early. Although I know, when I think back, I was having some minor leg pain and some light fasciculation-type feelings over the summer. It's just now it's non-stop.

Does anyone know how well I can trust an EMG that was just done in my left leg, with one needle out in my right to compare?

I never saw the entire report- the only part that was tricky to translate was something to do with sensitivity...nothing about fibrillations or sharp waves etc.

I so also get sore hands which can be sore to use or feel stiff which I know would point more towards a peripheral neuropathy than anything else.

Re: Pain and BFS

PostPosted: October 21st, 2014, 10:15 am
by Tweek
Reanne, (I'm french, I pray you to excuse my English)

Pain usually points far away from ALS. Of course, there is exceptions, but... if ALS is what you fear (and I think it is what you fear) pain is one more thing against this diag.

I advise you to read and read again and again this topic : WHY YOU DON'T HAVE ALS.
and this one : BFS in a nutshell

I have been reading your first post here, and I really don't worry for you...
And you have to trust your neuro. 6 weeks of twitching without clinical weakness is A LOT (The normal scheme is : weakness first, atrophy then, and fasciculations after that,. What's more fasciculations are not always present with ALS).

You have classic BFS, and you have to deal with your anxiety. BFS is so weird...

By the way, magnesium could help you with your cramps. You should give it a try.

Take care of yourself.

Re: Pain and BFS

PostPosted: October 21st, 2014, 10:21 am
by RIno468
"nothing about fibrillations or sharp waves etc.:"

So basically a clean EMG.


Now destress yourself.

Re: Pain and BFS

PostPosted: October 23rd, 2014, 6:39 pm
by reanne2489
Thanks guys - the stress has decreased somewhat, and the twitching is a little less. It has moved around if anything- from calves to left thigh, and also into thenar muscles in hands and arms.

The main concern is really the aches and pains I'm getting constantly- my left leg is agony! Sole of foot is painful to walk on, sore knee and aching/ stabbing calf. My hands also hurt. I think this is the hardest part...if this is BFS it's hard to accept the pain that comes with it.

I'm seeing an osteopath this week so hopefully that might lead to some improvement with the leg pain at least! So far my doctor prescribed me Myonal which hasn't done much, and just told me to ignore the pain... :/