anxiety management: a different approach

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

Moderators: JohnV, Arron, garym

anxiety management: a different approach

Postby erika on August 25th, 2003, 7:56 pm

Hi everyone, I'm new and I'd just like to say A THOUSAND THANK YOUs to arron and everyone else who contributes to this site. I've had persisent, horrible, terrifying fascics for two years, seen three neuros and no one has ever mentioned the term "benign fasciculations" to me. For some reason having a doctor tell you that your symptoms are normal is not as reassuring as hearing that there might be benign condition.

At first I was hesitant to read anything on this site because I have sworn off reading anything als-related after that fateful day two years ago. (do you ever wonder what our lives would be like today if we had never looked up "muscle twitches" on the internet that first time?) But it was at the advice of my psychologist that I finally did read some of these posts, and I can't express the wonderful relief I feel.

This brings me to the purpose of my post. After my third normal neuro exam, my neuro suggested I get counseling for the anxiety I was experiencing as a result of my fascics. I have never been a hypochondriac and I've never really had any problems with anxiety previously. I felt that all of my anxiety was simply from my fascics.

Two panic-attacks later, I realized that my anxiety was interfering with my life and I started seeing one of my school's psychologists. She was incredible. The first thing she said to me was "I'm not here to convince you that you don't have als. I am here to help you manage the anxiety that your fascics cause." It was such a different approach compared to what I had been doing -- which was like carring around an index card of all the reasons why I am healthy and don't have als.

It has been a slow process, but most of my daily anxiety about als is gone. Most of the time, I KNOW I don't have als. There are so many reasons why it is OBVIOUS that I don't have als. but I am still struggling with these irrational frenzies that seem to be brought on by some particularly scary (for me, that means in my hands, feet or shoulderblades) or persistent fasics. I lose all ability to think rationally and then I am convinced I am dying, and then I completely freak out.

Those freak outs are the hardest thing for me to deal with because I become so irrational that nothing can calm me down. but I do feel liek I am making progress with my psychologist.

Anyway, I'm wondering if anyone else has tried to help alleviate their fears with the help of a psychologist, and not just a neurologist.
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Hello Eika

Postby John on August 25th, 2003, 10:00 pm

Welcome Erika
You will find some good suport on here . Arron's post are great . I have'nt seen a Psychologist, but a family counselor did help .The word BENIGN is a wonderfull word . I am sorry that it took you so long to find us . I went to two different Neurologist to find mine . My anxiety was high untill I found this site,and I'm glad the Psychologist is helping .My right foot twitched all day today and is very sore now ,but I know it won't kill me,and I know it not ALS .


Good Luck to you
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Postby garym on August 25th, 2003, 10:07 pm

erika,

I'm glad that you seem to be finding some relief from the anxiety. I just had my first emg today (been twitching 2.5 mths) and the dr. says BFS, not ALS. I thought that would completely alleviate my anxiety, but it hasn't. Guess I'm looking at a second opinion.

Glad to hear there is hope.

Gary
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Finding a name for what I have

Postby patricia bunnell on August 26th, 2003, 2:03 am

Hi Erika and all,

I remember finding this website and reading about myself on the net. I laughed...I cried...I was angry. I laughed for joy...sounds silly huh? But I finally found out what I "had". Up till that point even the neuro was trying to convince me that my pain was Fibro Myalgia. I knew the pain wasn't FM. It was from my muscles twisting themselves in knots (ok...thats what it felt like). I cried...because I learned I "had" something! Strange as it may seem...it's a relief to have a name for what's going on in my body. I was angry...I can still remember that neuro walking away from me...treating me as if I was making it all up. I have to admit...that WAS my biggest fear.

Did she know how many times my brain was telling me "there's something WRONG with me"...and I had NO answer? I paid her big bucks to tell me what was free on the internet. That smug look she had...gawd...it still hurts.

How will I know it's gone? Will it ever be gone for good? Will I be one of those that have it forever? Will it get worse? I read some of your stories and I have it pretty bad. I know there's no answers for these questions...but if I have anxiety about my BFS...it's these questions.

I hate how I feel...even though Rx makes me feel better...I have mush for brains.

Tricia
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Postby erika on August 27th, 2003, 1:09 am

Tricia,

I understand how you feel about wondering if this is all going to last forever. I try to think about that in two separate ways: like, will the twitching last forever? and will my anxiety last forever?

from the posts, it seems like bfs can sometimes go away, but it can always come back. and we can't really control that, or even do that much to help. but the anxiety is something that we can work on.

for me, I know it's unrealistic to think that my anxiety about als will ever go away completely. like, I'll never be 100% sure that I don't have als no matter how long I've been healthy or how many neuros I see. but I do think I can get my anxiety under control to the point where I don't think about it all the time and it doesn't affect my life the way it does now. and just that hope that the anxiety can get better really helps me deal with things.
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Postby kim on August 27th, 2003, 1:32 pm

Hi Erika!

I have sought counciling, and it has been a tremendous help. Keep with it, you will be so glad you did. It taught me a lot about how to look at things differently, and how to cope with my fears. I must admit I'm also on anti-depressants, and they really helped me a lot! I will probably never go off of them. I feel so much better (mentally and physically) and my worries and fascies are at a bare minimum since I began treatment.

Kim
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Postby Arron on September 3rd, 2003, 12:37 am

Hi Erika and all, I too know all too well the anxiety of this stuff and that's why I am here. I was a TOTAL mess once I looked-up "twitching" in an old medical journal. The twitches I had for about a week didn't scare me in the least. It's when you find out that it's a sign of a serious motor neuron disease that freaks you out and starts this whole anxiety thing rolling.

I am glad to be here for you and I am here to help support anyone willing to listen. Yes I am hard headed and opinionated sometimes, but if I wasn't, I'd be nothing more than a big noodle, and I'm far from being a noodle. If I didn't have opinions, why bother speaking at all??

Anyway, I'm glad I can be of help to some of you. I still do research this stuff and still, everything is pointing towards a chemical cause, such as hormones or other "natural" body chemicals triggered by something.

Hang in there. This stuff is annoying and even painfull at times, but as I've said before in many other posts, not ONE person has gone on to develop ALS from BFS, and not ONE person has been rendered uslesss or crippled from this stuff either. I can think of thousands of thins that can be worse that are MUCH more common than this stuff.
So hang in there :-)
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Hormones

Postby Diann on December 16th, 2003, 3:41 pm

Hormonal, rings a bell for me. My cycle has been out of wack since several months before the twitching started, I attribute it to intense stress and anxiety I was dealing with really big issues in my life. My Gyn changed my pill that has helped some,but there diffinitely has been a change hormonally in my body.
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Postby sarahtonin on December 19th, 2003, 4:29 am

I definitely think hormones have got something to do with it - I had a IUD fitted shortly before all this crap started. But I have also found that taking a magnesium supplement (just not mag, not a mag-cal combination) seems to have really reduced my twitches - so who knows :?:
I don't think we'll ever really know. :?

Sarahx
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When do docs say BFS

Postby Jayel on January 7th, 2004, 8:38 pm

When I went to my neuro he asked me why I was crying. I told him my ultimate fear. He said he was not even going to bring that up. When I mentioned BFS he smiled and said I was clearly "educated" having checked into all angles/possiblities. He took the first EMG as a good sign and decided I could return if I wanted and if the BFS continued for a period of sev. more months. He suggested I not go to another dr. as they would be glad to "charge me and my insurance" for the very expensive EMG. However, he did NOT say I had BFS. My therapist requested a copy of his reports which really said he thought it was anxiety related.

If many scientists don't believe in God because of ;ack of physical proof, why do doctors, who believe in the scientific method, not question what they CAN SEE and FEEL. Some reports suggest that exposure to toxins causes twitching. We have a cluster of people in our area with cancer, and many of them are younger children. Noone is questioning but I am. Maybe I will be the next Erin Brockovitch (sp??).

ANy thoughts.....?
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When do docs say BFS

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