Welcome to the Experiences with BFS Forum!

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Welcome to the Experiences with BFS Forum!

Postby JohnV on September 12th, 2002, 1:09 pm

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

My hope is that through this forum you will be able to build friendships with those who are experiencing the same issues, problems and pitfalls in dealing with BFS in their daily lives. Let's keep this as our common goal!

In order to keep this a positive place, and to welcome new people in to this community, I would just ask that you respect each other's opinions, and try to encourage each other as much as possible.

Both the poster and the reader should try to remember that written communication is easily interpreted many different ways, so please also try to keep that in mind when interacting in this forum.

Attacks of a personal nature will NOT be tolerated. Please keep it clean.

Also, I would please ask that we try to stay on topic as much as possible in here, just too avoid alienating anyone.

Please refrain from off-topic discussions, use "The Lounge" for that.

Also, remember that behind every screen name is a real live person. As in real-life, people have many different motivations for posting the things they do. This is board is most useful to those in need when we keep the post on the topic of BFS. Ask your self before posting - will this help the person in need, and does this provide benefit to the BFS community?

If you need further information on Internet forums see this page:http://en.wikipedia.org/wiki/Internet_forum. For proper the etiquette to use in the forum see: http://en.wikipedia.org/wiki/Netiquette

Also, if you are new to the forums, make sure you check out the old forum archive by clicking the link in the Main menu on the home page.

Thanks for visiting!

JohnV
Last edited by JohnV on August 14th, 2006, 2:53 pm, edited 1 time in total.
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Postby izzie on February 16th, 2003, 3:57 am

Ihave just discovered your website and I am so relieved. I have had twitching and cramping in my thighs, shoulder, buttocks, arm and calves sine dec 2002. Prior to that I had intermittent twitching in my thighs for about 4 years. I saw a neurologist twice since christmas as I was terrified I had motor neuron disease. He told me I had Benign Fasciculation Syndrome but I didnt really believe him as I had never heard of it. My anxiety has been orbital and I struggle to eat and I cannot sleep without sleeping tablets. I feel I am becoming a complete wreck because of the anxiety. I get into a blind panic when I am convinced I am going to die and no amount of reassurance from friends works. I am scared of being alone so try to be with friends which helps. I stopped drinking but that didnt help and the neurologist actually said a drink would probably be a good idea. I take a very small dose of a long acting benzo in the evening which helps a little but I know it is not a solution for my anxiety. I was interested to read that someone had considerable improvement with an SSRI antidepressant. Has anyone else found antidepressants helpful?
This forum is very positive and reassuring for me, just knowing that there are others out there like me trying to deal with very scarey symptoms. I am determined to think positively but it isnt easy as the fear is still inside
I find night time the most difficult when my mind goes wild wi fear. Any suggestions please
thank you for this forum
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Postby Davidd on February 16th, 2003, 3:32 pm

Izzie--

Your story is just like so many others around here, including mine. One day we're fine and the next day we've got twitches all over. In your case, you already had some twitching but it sounds like a couple months ago in got a lot worse. I can relate so well with how you feel and the trouble that you are having sleeping at night. I went with insomnia for a period of time before seeing a sleep specialist and psychologist in addition to all the other neuros, orthopedics, etc. It took a number of months and help from a number of people for me to learn to deal with the twitches.

I am sure others here can tell you about anti-depressants but for me, I took Xanax for a little while and Klonopin for a little while along with over the counter sleeping medicine. The important thing for you right now is to get your mind settled and get some decent rest. The great news for you is that you've seen a neurologist twice in the past two months and each visit was a success in that you do not have any serious illnesses.

I wish I could tell you just to relax and that it'll be ok....because it will..but, like the rest of us, it is just going to take some time to get used to, but rest assured, you will get used to it. Maybe never 100%, but you will improve and your worries will become less and less.

Try to understand that what you are experiencing are just twitches and that's it. There's no motor neuron disease and nothing physically serious. It's just a twitch -- a small muscle movement -- an annoyance -- but nothing else. It doesn't control your life nor should it. They don't hurt and they don't interfere with anything that you do.

Best of luck with dealing with this and keep us posted on how you are doing. And, as you learn to deal with these twitches, please don't forget to share with us how you were able to do it!

--David
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Hang in there, Izzie....

Postby ANDRU on February 16th, 2003, 10:15 pm

I know it's easier said than done, but you have to de-stress. Please don't worry, because I can almost 100% guarantee that you're NOT gonna get some horrible muscle disease. Yes, by all means, see a specialist just to put your mind at ease, but I'm sure you're okay (twitchy, but okay) :D

Regarding your sleeplessness, may I suggest VALERIAN ROOT. It's an all-natural herb that really helps relax you. 1000 mg. and you'll fall asleep before your head hits the pillow. It DOES have one side-effect, but it's actually a good one -- VALERIAN ROOT gives you really vivid dreams. It works everytime for me. I'll never go back to Xanax or any over-the-counter sleeping pills.

Good luck, Izzie!!!!!
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Postby izzie on February 19th, 2003, 11:51 am

Thanks guys for the support,
I have had a normal EMG so should be relieved but feeling anxious today as the sensation of something crawling under the skin on my L arm AND R leg is scarey. I know I should let go of the fear but sometimes it is very powerful. I dont think there is much more reassurance the neuro can give me so it is up to me. He said I would probably have this condition for ever but not to worry about MND.
I will try Valerian and report back
Heres hoping you are all in good spirits
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