I'm perfectly fine now...

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

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I'm perfectly fine now...

Postby Souris on June 21st, 2004, 8:18 am

Hi everybody,

I'm back on this forum in order to give some re-assuring news to all those who are still scared about their BFS symptoms.
I was a regular poster here until about a year ago, and I was totally panicked. You can read my old posts and you will see that I was pretty sure I had ALS.

Now, a year later, I'm perfectly fine. I had some changes in my life last year, and new challenges made me forget about my symptoms and concentrate on more important aspects of my life. Then also, although this may sound funny, a real, however benign, health problem made my BFS symptoms go away. In October 2003, I had surgery on my right knee because of a meniscus problem. This was a very easy surgery, but it made me focus on my knee for some time and took my attention away from BFS.

For a couple of months, I had no symptom at all. Lately, I had a very stressful period again in my job and I felt my fasciculations and some cramping come back. I can feel them everytime I'm stressed out and tired. They don't scare me anymore at all, they come and go with stress and exhaustion. The occasional tongue twitch makes me smile now when I remember how those used to scare me to death...

Now I see my symptoms as a warning signal from my body to calm down a little bit, which is good, because I'm a very active person and I didn't pay enough attention to my stress and fatigue level before.

This ALS-scare period made me know myself and my fears better, and I feel a lot more relaxed and happy today. My ALS fear cost me basically a year of my life, but I think I had to go through this.
I am pretty sure this kind of hypochondria will never happen to me again.

I hope this can re-assure some of you who are still in the midst of their health fears.
I'm sure you'll be fine.
And thanks again to all those who took the time to answer my posts when I was scared. You all helped me a lot through that difficult period, and I hope you're all doing well, too.

Take care.

Souris
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Postby thetwitchkid on June 21st, 2004, 8:36 am

Thanks for taking the time to come back and share your story. It is VERY helpful.
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Postby Florian on June 21st, 2004, 10:35 am

Souris,

great news and iam happy for you!

Regards Florian
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Postby John_JR on June 21st, 2004, 8:46 pm

Souris,

Thank you for your positive post and I'm happy for you.

When you had your knee surgery, were you prescribed antibiotics? If so, could you please tell me the name?

Thanks,
John R.
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Postby Arron on June 22nd, 2004, 1:30 am

Just some comments from Arron on Souris's great post:


".... Now, a year later, I'm perfectly fine. I had some changes in my life last year, and new challenges made me forget about my symptoms and concentrate on more important aspects of my life. Then also, although this may sound funny, a real, however benign, health problem made my BFS symptoms go away. In October 2003, I had surgery on my right knee because of a meniscus problem. This was a very easy surgery, but it made me focus on my knee for some time and took my attention away from BFS."

This is exactly the key. Meds just don't work to "cure" BFS. They do hide the symptoms by "numbing" your senses, very much like alcohol masks the BFS symptoms for most people, but the only sure fire "cure", (if there is any), is coming to grips with this stuff and stopping yourself from dwelling on it, because your body reacts to it and causes the symptoms to worsen. When you are busy and doing things, you tend to forget about your symptoms and the BFS really starts to subside.


"For a couple of months, I had no symptom at all. Lately, I had a very stressful period again in my job and I felt my fasciculations and some cramping come back. I can feel them everytime I'm stressed out and tired. They don't scare me anymore at all, they come and go with stress and exhaustion. The occasional tongue twitch makes me smile now when I remember how those used to scare me to death..."

This is exactly some of the reasons some of us BFS verterans believe BFS is a body chemical thing rather than a true neuro or muscular thing, simply because stress and anxiety fuel this stuff so well, where "moods", attitudes and stresses don't really affect or interact with true neurological or muscular diseases. Ever hear about "happy" people coming down with Muscular Distrophy or MS or any other kind of serious neuro muscular problems? Of course you have. Aren't kids happy people. Ever hear about "Jerry's kids"? If it were only that easy. If it was just a matter of being "calm", "positive", "happy", stress free", anxiety free" and so on and it affected a "true" neurological and/or muscular problem, then we would have the answer to all of this stuff, as well as a cure. It isn't that simple though. The one thing that IS that simple is that YOU can "control" this stuff by calming yourself down, taking your mind off of it and STOp dwelling on it. Once you ahve done that, (and it takes more than a few hours or a day or two for it to work), then you'll find that your symptoms will subside. And you TRULY have to RELAX. You can;t just pretend to do it or it won't work. It is hard, I know... been there, done that and have since moved-on and have hardly any symptoms at all, and when I do... it doesn't bother me at all.

"Now I see my symptoms as a warning signal from my body to calm down a little bit, which is good, because I'm a very active person and I didn't pay enough attention to my stress and fatigue level before."

When you are all stressed-out about the fear of having ALS, this just fuels the fire and your symptoms get worse. Learn to do what Souris, myself and mahy other's have done, which is get busy, move on with life and stop dwelling on it, and it WILL start to subside.


"My ALS fear cost me basically a year of my life, but I think I had to go through this."

Yeah, and it cost me over 2 year of my life before I realized it wasn't ALS and that there is indeed life after BFS. Now it's been over 4 years since my first symptoms. Don't let that happen to you. You can learn from our experience and use that to your advantage. We are trying to help you, so use our info as a tool to get yourself better! Only YOU can make YOU better, although it took prescription after prescription of Ativan to help me through the first 2 years. If you need meds, use 'em. That's what they are there for.


"I hope this can re-assure some of you who are still in the midst of their health fears. I'm sure you'll be fine.
And thanks again to all those who took the time to answer my posts when I was scared. You all helped me a lot through that difficult period, and I hope you're all doing well, too."

It's all about SHARED experiences and medical data. Listen to the people with experience and learn from it so YOU can get better too. That's why people like Souris and myself keep coming back and helping other's. Hang in there. It DOES get better!
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Postby Nole on June 24th, 2004, 8:47 pm

I agree 100% with Aaron and Souris, moving on with your life is the best cure there is. I have had BFS for two years now, and the moment I realized I was fine (which luckily for me was just about 2-3 months) and had a benign condition I have been fine. Yeah I twitch from time to time, but I dont even think about it. Life is good when you can get past the fears. There are plenty of BFS survivors out there that can help you, keep the faith that all will turn out for the better.
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Re: I'm perfectly fine now...

Postby Pascal35 on August 11th, 2014, 11:49 am

Thats a great and encouraging conversation which i like to bring it back so a lot of us can read and get some positive feelings...
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Re: I'm perfectly fine now...

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