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AboutBFS.com • View topic - Bad days

Bad days

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.

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Re: Bad days

Postby edado69 on December 3rd, 2012, 5:03 am

Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Bad days

Postby edado69 on December 7th, 2013, 3:36 am

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Re: Bad days

Postby edado69 on January 15th, 2014, 7:15 am

Had a few decent weeks, but 3 days ago thumb moving powerfully and last couple of nights, neck to toes twitching a lot. Also cramp to the right toe. Difficult time.
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Re: Bad days

Postby edado69 on January 28th, 2014, 11:20 am

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Re: Bad days

Postby edado69 on January 31st, 2014, 1:49 pm

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Re: Bad days

Postby edado69 on February 1st, 2014, 4:41 am

My constant posting is in keeping with the unprecedented pattern of my fasciculations. At the least I can now see that there is a difference between twitching and constant, generalized, popping up - many places everywhere at the same time. The change has been somewhat abrupt over the last couple of weeks. Reading back my old post, I can see that I had changes of pattern and fasciculations got worse overall, but this is on a different level. I reduced my training, but this made no difference. Actually, should there be any relationship, it made it worse.
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Re: Bad days

Postby leaflea on February 1st, 2014, 7:58 pm

Sorry you are struggling so. I am still six years behind you so certainly can't offer any advice except to check your anxiety level and general level of happiness and check it carefully. Sometimes I am more stressed than I realize. Often when I have had any somatic symptom my husband asks "what are you stressed/worrying about?" It made me mad and often I could not think of anything right away, but more often than not, I think he is probably right. Some of us are just more "wired" to carry stress in our physical bodies and twitching can be a result of doing that too much for too long.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Bad days

Postby edado69 on February 3rd, 2014, 8:46 am

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Re: Bad days

Postby edado69 on February 20th, 2014, 9:47 am

A few days when at the least I could sleep, but now 5 days of very florid, constant, fasciculations to lower and upper limbs, and back.
No sleep, and this is not because I am not tired.
I have tried my usual remedy (gym in the evening): not helping.
The most remarkable aspect is the fact that twitches are more diffused (many fasciculations on the same muscle) and constant.
Hands are particularly affected.
Scary as much as bothersome (the two are interchangeable...). But, I am trying my best.

PS: still doing press-ups on the tip of my fingers
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Re: Bad days

Postby edado69 on February 22nd, 2014, 4:02 am

What a nightmare! I am almost 7 years in and I would not have expected to write updates such as this one. Yesterday I was doing some running and I got cramps. NEVER had this before. I was at my usual pace. Last night, cramps to my adductors stretching my lower limb. Again, unprecedented. I slept nothing at all. With florid, profuse, fasciculations and worsening aches...Horror. I am at the lowest point ever and I really fear for the worse.
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Re: Bad days

Postby TwitchyDoc on February 22nd, 2014, 5:13 am

edado, do not worry. From my experience (after 7 years too), I can tell you that I am sure fasciculations are worse than 2-3 years ago. Does it ever get better in your case (e.g. good week, bad week)?
The recent proceedings in the neuroimmunology has shown a lot of interesting things (like the gluten sensitivity causing fasciculations and even in one case mimicking full blown ALS). I wanted to exlude as many allergens as possible and only now eat vegetables, fruits, meat (unprocessed), rice and potatoes. No milk, eggs alcohol etc. I do notice improvement but only time will tell as it would take at least 1-3 months. I believe there must be an environmental factor as the symptoms fluctuate for many of us and continue for years.
If you really want to have a break from fasciculations, I suggest going on the Tegretol 3x200mg.
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Re: Bad days

Postby edado69 on February 24th, 2014, 5:28 am

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Re: Bad days

Postby edado69 on February 24th, 2014, 5:28 am

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Re: Bad days

Postby edado69 on March 8th, 2014, 7:17 am

Constant, bothersome, 2 weeks shoulder girdle muscles twitching on the left. Never had it before this way.
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Re: Bad days

Postby edado69 on March 10th, 2014, 3:24 am

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Re: Bad days

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