Well folks I'm afraid this could be it.

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Well folks I'm afraid this could be it.

Postby Arkansan on March 14th, 2016, 6:07 am

I haven't slept all night. I keep feeling a crawling, vibrating type sensation in my muscles, all over including my abdomen. Twitches in my throat, ribs, etc. My right leg is very stiff to walk on almost like it wants to be rigid. I keep getting random pains in muscles, deep deep aches that worry me that they could be cramps, sometimes the muscle is a bit sore for a second afterward. When I started to fall asleep my right arm felt like it was cold and tingled all the way down to my finger tips. My toes and feet tingle as well.

Leaning forward in my chair causes some minor pain and discomfort in my lower back, and as I type this I can feel a tingling/crawling feeling in my lower legs with some interspersed twitches. I have really taken a nose dive in the past few days and I'm terrified between all the pain, stiffness, twitches in odd places, etc that I could really be in trouble this time. I've had mild panic attack this evening.

I don't know what to think anymore, I'm at the end of my rope. Just a few days to a week ago I wasn't this bad.

Someone tell me they have been in the same boat. Everything twitches, multiple spots at once, the pains are weird, my legs are so stiff it's weird to walk, I just don't know anymore. I'm so afraid that this is it.
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Re: Well folks I'm afraid this could be it.

Postby Yuliasir on March 14th, 2016, 8:44 am

Arkansan,
it is really a pity to see you in such rapid dive.

but it happens to us, especially when we start to listen to our body, which had obviously happened to you after your 6 years Ok post. For me it looks like you just started to check, if you are really so Ok, and from tiny issues you rapidly went to complete breakdown, because anxiety disorder just waits to put its teeth into our soft sweet brains.

I do not see nothing in your symptomes to be more worrysome than in other fellows. I see you note minor pains (we have NORMALLY about 150 episodes of transient pains per day, looks like you had counted them all). You do not report real issues which may look suspicious for any doctor but again all only things of the range of 'it feels like' - which is an indicator of perception bias.

Seems like you have a bout - but a bout of anxiety disorder, which is expected every 4-5 years in our cohort. Yours just seem ot be a bit delayed.
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Re: Well folks I'm afraid this could be it.

Postby JOHN1189KY on March 16th, 2016, 9:04 pm

I had a neurologist tell me once that *** is not about feeling, but its about failure. Your muscles slowly stop working, they start failing. You may have restless leg syndrome. It causes these awkward crawling feelings in your arms and legs, there are effective treatments for this disorder. Keep your chin up and speak with your Doctor. I have been dealing with these twitches and other symptoms for almost 6 years. I finally (after seeing two neurologist) took my family doctors advice and started taking an antidepressant. I was amazed at how many of my perceived symptoms disappeared.
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Re: Well folks I'm afraid this could be it.

Postby Arkansan on March 16th, 2016, 10:17 pm

JOHN1189KY wrote:I had a neurologist tell me once that *** is not about feeling, but its about failure. Your muscles slowly stop working, they start failing. You may have restless leg syndrome. It causes these awkward crawling feelings in your arms and legs, there are effective treatments for this disorder. Keep your chin up and speak with your Doctor. I have been dealing with these twitches and other symptoms for almost 6 years. I finally (after seeing two neurologist) took my family doctors advice and started taking an antidepressant. I was amazed at how many of my perceived symptoms disappeared.


Yeah I just started taking Lexapro. So far it's hit or miss, but this is only my second day. I've felt so bad for the past few days that I just couldn't let it go. I've had twitches in my throat, tongue while at rest, my legs near constantly, twitches that I could see but not feel. My muscles have hurt like crazy, and any activity seems to produce a bit of discomfort. My throat has been dry for a week now, and today it seems odd to swallow and I find my self tripping over words. Hell it even feels like I've had twitches inside my esophagus. I've had multiple spots firing away at once. Earlier I was feeling of my adams apple and I swear it felt like one of the muscles near it was rapid fire twitching.

The hardest part is trying to separate out and accept this as something in my head. I've had soo much pain and soo much symptoms the past few days that it's just so hard to let go. Honestly I'd appreciate any encouragement or advice at this point, I'm at about the lowest I've been with this.
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Re: Well folks I'm afraid this could be it.

Postby Yuliasir on March 17th, 2016, 3:04 am

I've had soo much pain and soo much symptoms the past few days


which is 100 % different from MND you fear of. Pain and multiple symptomes without clincical weakness means a bout of BFS.

two days of lexapro (escitalopram) would not make any difference. I am on it right now for 3d month and I would be for the next two on full dose and for an extra month or two on lowering dose. You need 2-4 weeks to start feeling some differencce.
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Re: Well folks I'm afraid this could be it.

Postby mwagner on April 20th, 2016, 10:50 am

So much of what you describe has happened to me in the past 4+ years of dealing with this. I went through a period where my leg was feeling really weird, stiff and awkward and totally freaked out. I now have come to the realization that my body is just weird neurologically. I have shooting pains on occasion, I have weird stiffness, almost weakness sometimes, I have hot spots, twitches all over sometimes (I woke up this morning to a twitching storm), but that's what BFS is.
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Re: Well folks I'm afraid this could be it.

Postby pinprick on April 20th, 2016, 11:54 am

I'm an old timer ...
8 years ago i got what i was thinking everything possible. Pins and needles, tingling, bee sting sensations, electric discharge, burning, ants crawling under skin, random pains turning around ... etc, ... and obviously some twitches.
Well ... that's not the truth ... there is more.
8 months ago i was hit an other time (I have been hit 6 times now since 1992!).
Left leg stiff (feel like my leg is a piece of wood), constant sciatica like pain in my left leg, can't walk long without having some pain in my left leg, muscle pains for nothing like i have overdrive the muscles.
Obviously, legs are more implied since i use them every day but i have trouble too with arm.
I had an MRI to rule out some nerve compression and there is absolutely NOTHING. The spinal column is perfect.
I had an EMG and they found a slowing down of the velocity.
I had a blood check for lot of things (lyme, antibodies, B12,B9 ...etc). Nothing.
I asked to have a skin biopsies but the neuro said there is nothing here to do it, or something like this.

THE problem is that those checks are done when ... it is too late. The event that causes the trouble is gone.
I know that this problem is a cousin of a GBS, that is a neuropathy. The last neuro told me i have SFN and long fiber neuropathy.
Many of other peoples having GBS, SFN, CIDP have ... twitches... but it is not the major complain since in many case there is a strength lost (not in SFN by the way)
With each attack, new symptoms added on top of the others.
But why it is coming back about every 4 to 7 years approximately in my case?
I was able to do hiking 8 month ago despite those troubles and now ... yep! that's the end of everything. Can't do things when i am having those type of pains now.
-----
So, when I'm reading your case ... we are in the same boat.
It's not in our head, it's real.
There is no medication to address the problem in order to prevent at least new attacks in following years.
The only thing available are patches like Lyrica, neurontin, lexapro, cymbalta ...etc.
I'm on Lyrica and it doesn't do so much.

Good luck
Life sucks ...
Idiopathic SFN (head to toes) ... auto-immune related
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Re: Well folks I'm afraid this could be it.

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