My symptom management top ten

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

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My symptom management top ten

Postby Floater on April 16th, 2005, 1:26 pm

i have had BFS over 2 years now.. been through everything trying to get rid of it.. somethings i have found to be good and somethings i have found to be dangerous

GOOD
1. ESSENTIA water, pedialite, electrolite water without sugar SMART WATER..est
2. epsom salt bath everynight.. throw the whole 4 lb bag in the tub with a few drops of lavender. (especially for those who work hard labor jobs)
3. klonopin. the only drug i have taken out of many that actually helped my symptoms. ( though i never tried beta blockers)
4. Massage get one at least once a month it removes all the toxic waste from your muscles and it feels great.
5. light therapy. lay out in the sun or go to tanning beds. (especially those with bfs that have popping and snapping joints.. for some reason it has helped me tremendously,,must be a vitamin d thing)
6. B-12, folic acid, b-1, vit E ( please consult your physican and have your vitamin levels checked before doing this you may find that your deficiant in one of these like me i was low on B-1 now since taking it the buzzing and tingling have greatly improved)
7. Sam-e ( if it doesnt help your twitching it will help you cope better with BFS especially for those who find this condition mentally challenging..)
8. Sexual Intercourse or love making ( the only time that im free of all BFS symptoms..)
9. Vacations.. taking a break from life ...especially vacations involving the Ocean,, warm weather and swimming...sunlight
10. being around family and loved ones.. i found that being alone or by myself makes me ponder more on my illness. having someone there who understands what your going through is most benificial

BAD
1. Vitamin B-6 ( to much is toxic to the peripheral nervous system)
2. Creatine powder ( can cause liver damage and nerovascular problems)
3. coffee (Caffiene) hard to avoid but tempting especially carmel mochas
4. Anger or stress ( duh! )
5. Herbal remidies like valerian root , kava kava ( herbs need more reasearch to be proven safe alot of herbs are unregulated and could cause more harm than good)
6. Fast food ( dont eat this crap! eat healthy youll feel healthy)
7. alcohol ( may provide relief but just wait till the next day )
8. SSRI s drugs like paxil or zoloft can make your bfs symptoms worse. i was having seizure like attacks and myoclonus.. bluck:( )
9. THC ( this one is hard,, sometimes it amplifies internal stress.. sometimes it does the reverse)
10.Most Doctors ( they just dont get it and ussually will blow you off. Just keep hunting until you find one that is willing to work with you and try new therapies,, find one that is intrested in your BFS and will read your little print outs. one that believes you)
Last edited by Floater on April 30th, 2005, 1:10 am, edited 1 time in total.
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Postby marieclare on April 16th, 2005, 3:14 pm

That was SUCH a great post--i only read the posts that have HELP suggestions!! How MUCH Klonopin and how often?!!
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Postby Floater on April 16th, 2005, 5:10 pm

i ussually take 2 mg in the evening before my bath on workdays.. weekends i rarely take klonopin

great for sleep
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Postby traveler27 on April 16th, 2005, 11:59 pm

My body feels less stressed on the weekends than during the week, but I need the Klonopin every night (I take .5 mg per night). I get all kinds of jerks and jumps throughout the night that keep me from getting rest. You don't have that trouble?[/u]
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Postby Floater on April 17th, 2005, 7:47 pm

you mean right when your falling asleep you have a jerk that wakes you all night?? if so its called myoclunus and is very common with BFS especially in the early stages.. if your having problems up your dose before bed,,, try 1mg if that dont do it try 1 1/2 then 2mg..it should keep you from jerking.. klonopin is specifically prescribed for myoclonus and other crap.
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Postby joeyata1 on April 17th, 2005, 9:47 pm

floater you call this your illness? this isn't an illness or sickness. unless you have pain with your bfs its a massive nuisance and cause anxiety but i wouldn't call this an illness. look at the millions with cancer diabetes ms and on and on suffering deep pain daily thats an illness
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Postby Lance on April 18th, 2005, 5:07 am

thanx floater

coffee for me is hell!

stress is purgatory!

WHILE I am excercising I am completely free of symptoms!- heaven
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Postby Floater on April 18th, 2005, 5:54 pm

BFS is an illness/syndrome..
people that have BFS usually suffer from it.
its more subtle than most illnesses,,,, but it is a true clinical illness. i have had chronic liver imflamation since aquiring BFS. My neurologist believes that there is a cause and effect relationship between my liver and my neurological illness.

my symptoms include:
hundreds of muscle twithches a day
paratheisia
over 2 years of elevated liver enzymes
on and off positives in the auto immune tests
palmar erythema ( palms and feet )
uncontrollable facial flushing
leg pain
popping and snapping joints

i would say im suffering from an illness.. there is something happing.. it might not be disabling ... so much is unknown. maybe this illness is degenerating my liver or vice versa neurological
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Postby amy_twitch on April 18th, 2005, 9:58 pm

Hi Floater---I just responded to another post to both you and Ginny.

Given your symptoms and the liver inflammation, I'm curious to know if you've been tested for autoimmune hepatitis. I've read more than a few posts related to various kinds of autoimmunity and a possible relation to BFS. (not a solid connection, but enough to make it worth looking at). I'm just curious...

Thanks for the posts above.
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Postby Floater on April 19th, 2005, 6:23 am

the doctors i went to say its unlikely i have AIH ,,, they seem to think i have fatty liver... my liver enzymes ALT and AST are just slightly above normal... all other liver test came back normal... but you know i do believe i mught have AIH..its the docs who dont believe it. a liver biopsy would confirm it. but the docs say its to risky and watching my enzyme levels would be more safe..should they go real high the a biopsy would be needed:)
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