Feel safe but so discouraged at 8 months in

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Feel safe but so discouraged at 8 months in

Postby leaflea on June 19th, 2014, 7:25 am

Hi everyone,
After this condition began and I read up on it, I told myself I am "safe" after 6 months and definitely at 8 months. Good news is, I do think that I am!! Bad news is, I think I'm worse symptom-wise. I do have good times, but the flare ups are horrible. Just this week new symptoms include: crazy excessive salivation, hand cramping, abdominal hotspot (different than the first one in October that started this whole thing off - that one was strong, this one is a rumble) with cramping in the same spot, complete shaking in yoga class and the instructor saying "you poor thing, it is an amazing gift you give to yourself to get yourself here today" in front of the whole class. I wanted to scream "shut up! You have no idea, I exercise everyday and in probably as good condition as you!" For being a non-judgemental person, she blew it. Of course, I wondered if there was anything besides shaking she might have noticed because I wasn't sure she would have been able to see it. This morning I woke up to the top of my left foot dancing around. That beats the first thing in the morning tremors I had for a few weeks. I am going to list my symptoms. I know this has been done elsewhere, but maybe it will be therapeutic for me...or anyone else to see how alike we may be - or how different. One thing about bfs...I think it has far more odd symptoms than ALS, not deadly, but debilitating nonetheless. I have tried everything...supplements, therapy, reading, relaxation...I am going to Europe on a three week vacation next week and was/still am so looking forward to it. I just wish I felt better! Here goes with my list of symtoms that MOVE and CHANGE and MIGRATE and VARY from time to time, week to week, month to month:

internal tremor/vibration - usually at night before falling asleep or waking up in the middle of the night with it
real tremor - hand and other places (actually first noticed three years ago now as an isolated symptom)
leg cramping - anterior tibial, calf, and feet
hand cramping
abdominal cramping - started before twitching noted 10/13, and continues as of 9/14
loss of subcutaneous fat in hands and feet
cold hands and feet
swolllen appearing forearms
pain on the top of the foopain on top of hand 9/14
twitching - as a given, absolutely everywhere except tongue and scalp - in every frequency and strength - scapula and thenar drive me insane
tapping/cascading sensation almost constant day and night left ankle/heel - for months
excessive salivation
mild slurred speech
change in handwriting
pain in tops of forearms
heavy insides of forearms in evening
large ganglion types of bumps on tops of hands/wrists which were painful at first, now diminished and no more pain
numbness in cheek lasting weeks
palm itching
frequent yawning - frequent urge to yawn I can suppress too (starting a year or two prior to twitching)
slow relaxation of muscle - during massage for example - a kind of chronic tension
quivering muscle after exercise
shaking muscle during exercise
some weight gain
appearance of atrophy in wrists
appearance of atrophy in upper back (scoliosis?)
upper body trembling upon awakening
soreness and fatigue of upper arms
tripped on a rug - can you say "tailspin"
difficulty sleeping
fullness and itching in ears
sinus issues - honestly longstanding
worsening asthma - since childhood but worse past few years
burning pain throughout upper back
pain between shoulder blades on spine (scoliosis?)
mushy feeling muscles - more than one massage therapist commenting on this "congestion"
poor abdomen/core and upper arm muscle tone despite frequent strength training those areas in the gym
buzzing sensation in various areas, about the size of a quarter
Brief feeling of a bee sting, often on back of the leg
hands and feet falling asleep easily
numb second toe and half of third
dexterity loss in left hand - maybe perceived (in mid July 14))


Fibro anyone? I didn't used to think I fit the description, now wonder if I do.
Hashimotos? Preliminary tests suggest not.
Suggestions? Ready to consider a medication if it has truly helped anyone.

This all started at age 46 after a MAJOR stress period of 3-4 unrelenting months of stress. I am now 47. Female. The internal vibration at night started during the stress, the rest of the symptoms followed the stressful period, just when I was starting to calm down. I am not typically, knowing myself for 47 years, an anxious person, but seem to be now. Health Anxiety has made occasional appearances over the years, but I used to be a bit of a clown, happy and funny. My sense of humor makes rare appearances now. I can say the symptoms intensify with any stress; my stress tolerance/threshold has diminished. I feel my nerves have been damaged by a long bath in adrenaline. My life really is beautiful. I want to enjoy it. I DO appreciate my good days, and do have them. It is helpful to keep a small journal to remind myself of this on the bad ones.

Thankful for this group and this board!
Last edited by leaflea on September 22nd, 2014, 7:04 pm, edited 3 times in total.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Feel safe but so discouraged at 8 months in

Postby Steph on June 19th, 2014, 2:10 pm

Hi Leaflea,

You and I seem to be on the same crazy train BFS journey. I remember when all of this started for me 10 months ago and I read through an old thread of Chrissi's with a similiar list. At the time I thought "wow, I'm so glad I've only had a couple of those issues". Fast forward to now and the twitches are not really even a concern anymore. I have experienced nearly everything on your list and Chrissi's original list, plus some awful GI issues, hands falling asleep frequently and migrating sharp pains (I had one that kept recurring last week that felt like someone was driving a nail under my fingernail on my left pinky). I also shake like a leaf during Yoga and BodyPump classes. Right now, everytime I lay down to sleep my entire body trembles just as I doze off and wake up. At first it was only internal tremors, but now others can actually feel them. That one is really driving me nuts! I also question Fibro. I got the all clear from my neuro after a clean EMG a couple of months into this and haven't been back. I am wondering if maybe there is some type of treatment to alleviate at least some of this craziness.
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Re: Feel safe but so discouraged at 8 months in

Postby leaflea on June 19th, 2014, 5:20 pm

Yes, Steph, we are in it together! I thought of a few more - the hands and feet falling asleep and a numb toe and a half. Sometimes brief feeling of a bee sting. My symptoms have changed since the beginning, can't say progressed, but changed for sure. I have tried juicing and gluten free. Please let me know if you find anything to bring relief. How old are you and how did yours start?
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Re: Feel safe but so discouraged at 8 months in

Postby Steph on June 19th, 2014, 9:16 pm

I turned 37 in March and my symptoms started after a several month period of extreme stress (my husband and I both changed jobs and we moved to a new community). Ironically, the symptoms started after everything had settled down and I was just starting to feel less stressed. I did have a few weeks in January where I almost went symptom free. But, it didn't seem to correlate with any changes I had made with diet, etc. I agree about the symptoms changing, at this point I have no idea what will come next. These sensory issues are much worse that the twitching is for me, as I find them more difficult to ignore.
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Re: Feel safe but so discouraged at 8 months in

Postby German2 on June 20th, 2014, 11:22 am

Dear leflea,

you know already, that we share a few symptoms. It also started for me with moving to a new community over here. I also have a lot of strange symptoms, partly scaring me like hell.
I add my list of symptoms as a further example:
started with pain an twitching pinkies almost 2 years ago (also vessels had a painfull rush, s.t. for hours in those fingers)
Nerve pain with changing locations
sensible sensations in hands (cold, could not stand)
noise sensivity
gorge cramps came and go (now I am into it again), same with swallowing
burning hand and feet
stiff muscles
pain in jaw and clicking
clicking of joints
numb fingers in the morning (s.t. during the day)
slight muscle decline in hand and feet (partly reversible, but new one appeared)
Pain in muscles, especially in the new "holes" just for a while
limb twiching bevore sleeping (went away)
fasciculations starting 11 month ago in legs, quite strong ones. Now just hotspot under one feet. A few twiches here and there
Could not speak any more for a few hours in one day (never came back)
Pain in toes and fingers
Most doctors diagnosed me with somatic disorder. My new neuro found antibodies against nerve system (ganglioside). Most of neuros wouldn't ever examine. Now I try on cortisone. Before we tried antibiotics (to kill potential bacteria- but it did not get better, it got worse). I know it is quite a lot of therapy all at once. But my new neuro is of the opinion to give certain therapies a try...(I remember that 4 years ago, I had so much pain in my left upper leg, that I could not walk for weeks - no reason found. After that my thigh went numb for more than a year. Maybe that was a beginning...
I also had normal figures with my thyorid..but antibodies came out very high...So I got a therapy with refferring hormones (my thyroid would be three times bigger than normal - strange,because that was tested more than once before) - diagnosis: Hashimoto. I am ok with that, because the hormones helped me quite a lot against my axiety. So it was worth a try.
Maybe this offers a view possible thinks to check or to recheck for you.
Acutally I just have to wait what happens after so much therapy all at once. For me it is better than to do nothing.
But I am still afraid of "what comes next".
Like you, I am already in the saftey zone. But last week an ostheopat told me that he thinks of als or ms when he realizes my functional disorders in my body. So the beast is out again somehow...

Hope that you could find a bit reassurance out of this list of symptoms in comparison. And maybe one or two aspects you might check.
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Re: Feel safe but so discouraged at 8 months in

Postby German2 on June 20th, 2014, 11:56 am

I forgot to mention that I realized since a few week, numbness of my skin of my shoulders..
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Re: Feel safe but so discouraged at 8 months in

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