I give you hope.

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I give you hope.

Postby Chris swl on January 19th, 2010, 4:34 am

Hi friends
My name is Chris and I have not been on this site for months. Some may remember me and other obviously will not know me at all. I spent quite a lot of time on the board during my dark days of BFS and made lots of friends too.

So I am going to pop back on site today to give hope to those whom have this illness BFS. This is a real illness and is not like any nasty illness or ***, it is what it say’s it is ,benign, although, annoying and sometimes painful.

My BFS started in June 05 with a thumb twitch, then Bam!!
Wide spread fasciculation, limb twitches, muscle vibrations, stiffness, anxiety, depression, fear, weakness, Myoclonic jolts (at rest.) Then came the pains in my legs, arms back, etc, etc. The worst pain was in my feet. I was unable to stand for long periods of time, unable to exercise, I gained weight. I was a wreck, crying and self examining on a daily basis, looking for signs of the nasty stuff. I could not even take my daughter to school with out fatigue and pain. I could not go out and socialise And much, much more!! The story goes on.

Until I met people on this site who helped me get my head straight. I stopped listing to that little Devil in my head and accepted I hade bfs, and nothing more.
Now 2008, I very rarely notice the twitching and only have minimal feet pain, which is improving, slowly.
Yesterday I cycled 12 mile on my bicycle I bought two months ago.
Believing I would never ever get over this I sold my other bicycle in 2006. Mistake,
as there is light at the end of the tunnel, Although, it may be a slow process there is an end to this condition, honest.
I now feel mentally tip top, and socialise once again with friend. If someone had told me I would feel this way in 2005 I would refuse to believe them. But the proof is in the pudding, (not that I am a pudding) My life is back, as yours will be too, one day.
For some it takes weeks, other months. For me it took a few years, but so what!! With this condition you have years, unlike the nasty stuff.

So please weather the storm, be brave and live in hope, never give up, try and distress and remember this thing feeds off stress big time. Stress plays a big part in bfs.

Now read what top neuros say about BFS

Benign fasciculation syndrome (BFS) is a neurological disorder characterized by fasciculation (twitching) of various voluntary muscles in the body. The twitching can occur in any voluntary muscle group but is most common in the eyelids, arms, legs, and feet. Even the tongue may be affected. The twitching may be occasional or may go on nearly continuously. Any intentional movement of the involved muscle causes the fasciculation to cease immediately, but they may return once the muscle is at rest again.
Common features
In addition to twitching, patients with BFS often experience pain, paraesthesia, generalized fatigue, exercise intolerance, globus sensation and/or muscle cramping.
Another common feature of the disorder, when seen by physicians, is an increase in the patient's level of anxiety, especially health-related anxiety. It's not uncommon for the patient to fixate on ***/** or some other serious neurological disorder, refusing to believe the BFS diagnosis Since it is anxiety, not fasciculations, that brings patients to physicians, the association of BFS and anxiety is probably an example of ascertainment bias.
Causes
it is much more often due to more benign causes (BFS, over-exertion, etc), and virtually everyone will experience some episodes of benign fasciculation during their lifetime.
The precise cause of BFS is unknown, and, in fact, Mitsikostas et al found that fasciculations "were slightly correlated to the body weight and height and to the anxiety level" in normal subjects. [1] Another factor that seems to be common in many cases is a history of regular strenuous exercise. Or a related disorder may be a contributing factor, and people with essential tremor appear to have a greater than normal likelihood of developing BFS. [citation needed] In addition, there are likely other genetic and environmental factors that make the patient more susceptible to BFS.
There are some intriguing similarities between BFS and chronic organophosphate poisoning, but these similarities have not been explored. It may be that chronically elevated levels of stress hormones in the body cause damage similar to the damage caused by organophosphates
Treatment
Some degree of control of the fasciculation may be achieved with the same medication used to treat essential tremor (beta-blockers and anti-seizure drugs). However, often the most effective approach to treatment is to treat any accompanying anxiety. No drugs, supplements, or other treatments have been found that completely control the symptoms
In many cases, the severity of BFS symptoms can be significantly reduced through a proactive approach to decrease the overall daily stress. Common ways to reduce stress include: exercising more, sleeping more, working less, meditation, and eliminating all forms of dietary caffeine (e.g. coffee, chocolate, cola, and certain over-the counter medications).
Outlook
BFS is not life-threatening and generally not disabling, but it may be persistent enough to create some degree of disability, especially if cramps or pain are also present. In many cases, however, the accompanying anxiety is more disabling than the disease itself. The vast majority of cases clear up spontaneously in a few days or weeks (and in fact are never presented for diagnosis), but some may continue for years.
Good luck to all with BFS/BCFS
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Re: I give you hope.

Postby twin2 on January 19th, 2010, 7:09 am

Hi Chris. Glad to hear you are doing well.

Thank you for taking the time to post your story. I know it will help many through their anxiety.
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Re: I give you hope.

Postby simon_w on January 19th, 2010, 2:33 pm

Thanks for the great post Chris
Regards
Simon
Fascics since Sep 08 when aged 44. Abnormal EMG (denervation/reinnervation L quads); brisk reflexes R arm on one clinical exam. Health anxiety in early stages, less so now
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Re: I give you hope.

Postby Chris swl on January 21st, 2010, 4:30 am

Hi Friends

You are welcome. I should really update that post (2008)as, it is now 2010,( Where does the time go? )
I am fine now, i have a twitch now and again, some times the odd storm. but nothing like the past. I am now pain free and have a life again, so no matter how bad things get remember there can be an end to this horror! if anyone needs advice just feel free to contact me.

My biggest tip is try and keep stress levels down, hard i know but it is connected big time.

Cheers, and keep up the fight.
Chris
Good luck to all with BFS/BCFS
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Re: I give you hope.

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