Help!

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

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Help!

Postby JMH1504 on January 10th, 2016, 12:13 pm

Hi All, this is my third post to this site. I have been diagnosed with BFS by a neurologist now confirmed recently by second opinion also and have now been trying to deal with this condition for over 3 years. I have come to terms with the fact that it is not life threatening but I am having so much trouble finding a way to cope with it on a day to day basis. It is 2.30am as I write this being kept awake by continual twitching in the arches of both my feet to the extent that it causes my big toes to move, continual twitching in both calves, continual twitch at the side of my left eye and random bodywide twitches elsewhere including thighs, hamstrings, neck, face, torso, hands, arms etc which is becoming more and more frequent and intense. Along with the twitches I get random tingling, foot and hand pain, cramps in the arches of my feet, muscle pain and stiffness etc. I have a beautiful supportive wife and two fantastic and awesome kids but find this condition is causing me to spiral downwards taking my family with me at the same time and it scares me where this is going to end up. It is now having an impact on my professional career as well as I am having so much trouble focusing at work. I have tried numerous different strategies including psychologists, hypnotherapy, Chinese acupuncture, kinesiology, magnesium supplements, benzos etc but nothing seems to help or work. I am thinking of trying naturopathy. I know BFS feeds off anxiety and stress but find the constant twitching and everything else that comes with it makes me anxious, frustrated, angry, tired and now depressed. Is there anyone out there in the BFS world with any ideas, methods, strategies etc that have helped them cope on a day to day basis as I need something that is at least going to help me deal with this *beep* awful condition. Sincere apologies for the rambling post. JH
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Re: Help!

Postby mariaj on January 13th, 2016, 6:34 pm

I think the key to you getting better is to work on your anxiety. I had the same problems as you back in 2008/09 but am now fully recovered. Looking back it was my reaction to the twitching the anxiety that was crippling. I seeked helped from the anxiety centre (look them up on the web). It took a lot of work on my part to get my thoughts in order with their help but once I really Accepted my condition was benign I found my body started to settle over time. I was also told that if my twitching ramps up during recovery to not worry about it and just float with them so to speak! It's exactly what happened and over time the twitches fizzled out anxiety stopped. My twitching comes back occasionally but my attitude is one of dismissiveness towards them. I developed a "who cares" attitude and all is good. Honestly I'm not trying to promote this organisation as I've not been back on this site for years (except yesterday) but I just came across your post and it resonated with me. Look up www.anxietycentre.com. The key to regaining your normal world is to eliminate anxiety. Hope this helps
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Re: Help!

Postby MarioMangler on January 13th, 2016, 11:23 pm

^ listen to what she said. Some good advice there.
BFS FAQ:
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
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Re: Help!

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