My BFS...6 months in,my 126 (OMG...) BFS symptoms

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My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby chrissi on January 7th, 2012, 7:55 am

I am 6 months into this crap now and just wanted to give a short feedback on how my BFS developed. For a first note..I think my symptoms have improved quite a lot. Maybe this might help some other people going through the same rough BFS start as I did.
I underlined all the symptoms I still have. New ones are increased back pain and headaches and phases of dizziness. My tremors have diminished a lot since the beginning, my twitching is fluctuating but less, the myoclonic sleep starts have completely gone, my body parts stopped falling asleep constantly, foot and wrist jerking diminished a lot, swallowinmg issues have completely gone except my geografic tongue and this involuntary swallowing stuff, the internal vibrations in my legs have diminished a lot. My overall pain had gotten better and now concentrates on my right leg and my right arm. My left side, where all that stuff started, is almost fee of symptoms. I get some visible swelling in my hands and feet and lately also around my eyes.


Precursor symptoms: some tingling, hands falling asleep, finger stiffness
Full-Blown BFS from head to toe:

Skalp: freezing, shocking sensations, tightening sensations on skalp
head: head tremor , I think deriving from my spine, makes whole head tremor, occasionally my whole head is shaking with my pulse, very weird, dizziness, vertigo
face: facial twitches, especially lip twitches in the corner,some nose twitches, strange sensations on my face like invisible hair, gle-like-sention, water sensation, face tremors in cheeks, right side of face along jawline going numb
jaw/mouth: jaw twitch when I loosen it, tingling/numbness from my ear to my chin along the jaw bone, jaw tremor makes my teeth clap, buzzing "electrical" feelings of jaw, lips and tongue, gum itching, burning tongue, bad lip tremor when smiling or drinking, tongue twitches that can be induced by yelling or wiggling my tongue
neck/throat: globus sensation, feeling of dry mouth or extra saliva, problems to get swallowing process started, tongue biting,tongue feels heavy , huge and and "strange", choking, neck twitches, involuntary swallowing "jerks"
shoulders/back: deltoid and back twitching esp. at night when I lie on them, sore shoulders, feel weak, problems keeping my arms up, burning pain in shoulders, constant internal vibration in the area where my right arm is attached to the shoulder, tremor, pain between shoulder blades
arms: internal vibration in right arm, arm is moving and pulsating with my heartbeat, arm feels fatigued very easily, sore muscles, arm twitches esp. in trizeps, bad arm tremor when leaning on it slightly or lifting objects, almost comnstant pain in ellbow, tightening sensations in my lower arms like pulles muscles, often a whole strain along my ellbow is hurting, wrist pain, glue-like-sensations on my forearms , arms fall asleep easily, veins stick out a lot
hands: bad finger tremor in both hands (see vid), thumb tremor makes it impossible to use mobile phone, pain in palms esp. in area where thumb is attached to wrist and the meaty part below the pinky, veins stick out like hell, twitch hotspots: between thumb and pointer, under pinky, thenar muscle, extreme finger stiffness, fingers feel swollen especially in the morning, tickling sensations, numbness in pinky an ring finger, hands fall asleep as soon as I lay down, loss of dexteritty in hands, problems dealing with tiny objects, dropping things, after fine works my fingers feel lead-filled and slowed down, hand pain, wrist pain, needles and pins, itching between pointer and thumb, at night my fingers have a life on their own, move around, lots of finger jerking and wrist jerking, sometimes I wake up at night with fingers tremoring bad or-even more scary-my arm feels not attached to my body andI have no control over it for a few minutes
chest/belly: some twitches, not really a lot of symptoms except some tightening/vibrating feeling in chest
Hips/butt: Hip pain,groin twitching (often kind of vibrating, rumoring twitch), butt twitching, butt falling asleep regularly, private parts twitching
legs: 24/7 calf fasciculations, thigh twiches, sore muscles, feeling as if someone had strapped a rubber band around my leg so there's bad blood circulation and "pressure" in it, sometimes very very bad, strange numbness on my shins and calves, especially felt when warm water running over it, feeling of cold or wet patches, on my mailny hurting leg (right one) one big vein sticks out like a snake, looks odd, extreme pain and pulling sensations in my hamstrings, cannot stand still because legs will hurt like hell, legs fall asleep a lot, toes move around from twitching, buzzing sensations in my arches, tons of arches twitches, toe and arch cramps, numb spots on my big toes, my right ancle feels weak and "strange", I feel like walking movements don't come naturally (I have to concentrate on every step), ancle pain,legs feel rubbery, perceived problems walking down stairs or on uneven ground, feet feel swollen, lefs feel heavy and weighted down, feeling of walking on my bones or next time walking on pillows, cannot walk with socks on straight surfaces ( feel slippery), my gait is insecure, always afraid of tripping, cannot trust my legs because they feel so weak, legs vibrate when lying down, lrg bounces up and down when outting pressure on toes
other symptoms: lots of jerking and myoclonic jerks, I can feel and see my pulse moving in all kinds of places on my body, lightheadedness, problems to concentrate, anxiety, brisk reflexes
Last edited by chrissi on July 3rd, 2012, 3:33 pm, edited 6 times in total.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My BFS...6 months in, development of symptoms

Postby Pete Borota on January 7th, 2012, 10:14 am

Hi Chrissi,

I think for a lot of us have always been of high anxiety. Unfortunately our symptoms drive us to higher states of anxiety and so it becomes a self driven monster. For me breaking this is to lower anxiety, get whatever exercise you can and get a good sleep pattern.

We know in time that our symptoms will slow and we have to be aware when we get stressed or ill. Hopefully he forthcoming year will start to see you symptoms decrease.

Pete
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Re: My BFS...6 months in, development of symptoms

Postby chrissi on January 7th, 2012, 3:01 pm

My anxiety is totally down and I think this plays a part in why my symptoms got better. I hope that the rest of the symptoms will vanish with time, unfortunately this pain is a real nuisance.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby Pete Borota on January 7th, 2012, 5:17 pm

You and me both sister :D I know it'll take around 6 weeks to relent
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby bailyloves on January 8th, 2012, 6:09 am

Hi chrissi.I think u r just replica of mine,lot of similarity dear.Just relaxed i am with this stuff since last 2 years.Hope they will go soon..take care..baily.
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby Silverbullet on January 10th, 2012, 5:06 pm

Yep! I get lots of this crap! also REALLYI as much as you my friend I am sure! I am putting some distraction strategies in place. I am contemplating shock therapy !! Joking :)
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby chrissi on January 10th, 2012, 5:15 pm

I will get kind of shock therapy LOL...we'll see how it works..
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby Pete Borota on January 10th, 2012, 5:26 pm

Interesting :D
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby chrissi on April 6th, 2012, 5:58 am

*kick* O often hhlinked this lately and so I don't have to look for it that long...
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby KatieMG on April 6th, 2012, 6:44 am

I have a lot of similar symptoms so I am glad to see you saw some improvement over time.
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby chrissi on June 15th, 2012, 2:12 pm

Had some new PMs about this post so I just push it up again..
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby chrissi on July 8th, 2012, 10:53 am

*push*
Hey guys, I totally do not mind you PMing at all, I like reading your notes, but I think it would be a good idea if you would just -additionally to PMing me- write down the weird stuff you share. Because it is amazing how many of you share a good portion of that symptoms and actually also very strange things like the glue-like feelings on arms etc..I think it would be even more reassuring if newbies would see that I am not the only one that has "their" stuff but that there are-apparently a lot-others too
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby Scandinavian girl on July 9th, 2012, 2:16 pm

I'm so glad t hear that you are better. That gives my hope.
I can recognize so much of your symptoms that I almost couldn't believe what I was reading in your post!
I have a lot of water sensations, like ice cold water drops hits me, some times very hard. And the feeling of having a hair around my toes, on my arms, in my face etc. No one I know understands anything of what I'm going through:(
Was it just time that helped you? I need every advise I can get, I'm feeling desperate.
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

Postby chrissi on September 12th, 2012, 3:18 am

*kick*
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My BFS...6 months in,my 126 (OMG...) BFS symptoms

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