Something simple to help newbies - keep a symptom journal

Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym

Something simple to help newbies - keep a symptom journal

Postby MarioMangler on September 30th, 2014, 12:36 pm

If you are new to BFS, I'm sure you come to this board for the first time and you are just overwhelmed with what you are supposed to be looking for. Or which topics you are supposed to be reading and which topics are nonsense. However, here is something simple that will help every newbie. Lord knows that in my early days it helped me:

Start keeping a symptoms journal

I can't tell you how helpful it was in my early days to have a place where I wrote down my weekly BFS symptoms. Every Monday at work, I would take out my little journal and I would make a list of all the things that were bothering me that day. And I would include a number next to it (on a scale of 1-10) of how bothersome those symptoms were. For example, my journal in the early days would have looked something like this:

Twitching eyelids - 4
Crazy left leg - 7
Cramps in both thighs - 3
Right pinky feels weak - 10
Buzzing feet - 7
Hard to breathe/chest spasms - 9
Buzzing mouth - 8
Right side of the nostril buzzes - 2

Doing this is a great way to get your fears out on paper where you can chronicle them and you can get a handle on what is bothering you the most. And then if you watch and you pay attention over time, you will see that your symptoms don't actually ever progress into anything. They just sort of wax and wane based on what your sleep level is and what your stress level is at the time. In other words this is a cheap way to get around paying for therapy and doctors appointments and expensive biofeedback machines, you can basically just do it yourself with a pen and paper. You can also track your diet and your sleep levels to see if they are doing anything to make your body act up.

However, the true benefit in keeping a symptom journal is when you start looking through your old ones. I swear, I have about six years of symptom journals lying around in my notebooks, and when I go back and look at what was bothering me in the old days, it is pretty amazing. It is amazing because some of those symptoms I don't even remember having anymore! Seriously, in my first six months of my symptom journals I was mostly terrified of my right pinky being weak. It always felt weak. I gave it a ten pretty much every week for nearly six months. But now, it is six years later, and I look back on my journals and I don't even remember that! I have no recollection whatsoever of my pinky being my most troublesome sign. Nowadays my pinky feels fine, and it has been fine for probably five years.

In any case, a symptom journal is great for random little mental high fives like that. Start keeping track of your symptoms, and you will start getting a better handle of when your symptoms are good, and when your symptoms are bad. In fact I even got my wife involved. She loves to remind me every year that when my BFS starts acting up around August, and I start to get bothered by it, she will be the first person to remind me, "Remember, it always gets bad right around now. You always complain about it between August and October. Don't forget, this isn't new." Then of course I can go right back and look at my symptom journal and realize she is right.

So there you go, just something free and simple that anyone with BFS can do. And it will help you a lot.
Last edited by MarioMangler on September 30th, 2014, 3:58 pm, edited 1 time in total.
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
Posts: 1672
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: Something simple to help newbies - keep a symptom journa

Postby mwagner on September 30th, 2014, 3:14 pm

Love the idea. I do it myself but simpler. Just rate my twitching every day, and if there is an outstanding symptom, I write it down like "tongue twitched today". I actually had tongue twitching yesterday and looked back and had had it almost exactly a month ago as well. Nothing like finding a pattern to your twitching!
Posts: 1066
Joined: August 27th, 2011, 5:15 pm

Re: Something simple to help newbies - keep a symptom journa

Postby Crampydr on September 30th, 2014, 3:14 pm

Thank you, what a helpful post!
Posts: 14
Joined: July 6th, 2014, 10:13 am

Re: Something simple to help newbies - keep a symptom journa



Return to Symptom Management

Who is online

Users browsing this forum: No registered users and 1 guest