Struggling with paraesthesia

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

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Struggling with paraesthesia

Postby twitchinjohnny on August 18th, 2013, 4:28 pm

I know that paraesthesia (tingling, pain, burning and other abnormal sensations) are a fairly common symptom of BFS. I had my first real paraesthesia issues about a year before I noticed my muscle fasciculations. Since last April, the tingling (and sometimes pain) in my feet, legs, hands and arms has been ramping-up again.

I've had more than one MRI (brain & C-spine) that have given my neurologist cause to rule-out MS. I've been on a vitamin B-12 supplement for a while due to borderline low B-12. I'm not diabetic, and I don't think that my alcohol consumption history would be sufficient to bring on a neuropathy. I see my neuro in about a month, and I'm eager to see where he goes with this now.

Anybody out there in the land of BFS have a similar deal? If so, I'd be very interested in any info and/or anecdotal information that folks might like to share on this topic.

Thanks very much!

John
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Re: Struggling with paraesthesia

Postby Tiber2011 on August 18th, 2013, 5:10 pm

I have the exact same problems that you have. I'd be interested to hear what your doctor says.
My neuros say I don't have anything.

I think the best thing to do is sleep. I know it sounds lethargic, but rarely have my paraesthesie bothered me at night.
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Re: Struggling with paraesthesia

Postby twitchinjohnny on August 18th, 2013, 7:02 pm

Thanks for your reply, Tiber2011....

Getting enough good-quality sleep is really huge. I know that lack thereof makes all of my symptoms worse. The paraesthesia in my feet always seem to be worse at night when I'm trying to fall asleep. Also, when I wake up in the morning. Maybe circulation has something to do with that. I'm going to ask my neuro his thoughts on the possibility of neuropathy, spinal stenosis, etc., etc. in my case. I have a brother who now has constant tingling and numbness in his feet and legs, and he's been diagnosed with spinal stenosis.

When I first saw this neurologist about a year ago, he did an EMG on my legs and arms because I was worried that my fasciculations might be due to ALS. Thankfully, he was confident in ruling that out. I'm wondering now if he might do another EMG given that my paraesthesia issue has returned with a vengeance. Sometimes these doctors do another EMG if they suspect peripheral neuropathy.

Perhaps one of the most frustrating "fun facts" that I've come across is that about one third of all clinically documented neuropathy is of an idiopathic (unknown) origin. It's amazing just how much of this neurological stuff, including BFS, is still pretty much a mystery to even the greatest medical minds today. What a drag for folks like us...... yes?

Anyhow, thanks again and I'll keep you posted.

John
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Re: Struggling with paraesthesia

Postby muppetdog on August 18th, 2013, 11:00 pm

My feet and legs are burning, prickling, painful as I lay here in bed right now. Everything you said I can relate to. My paraeshesia has ramped up again as of late, also.

Stretching sometimes helps. I think eating certain things brings it on more. Sometimes I have no idea why it starts. Lack of sleep makes it, and everything else, worse. It is not constant like I have heard diabetic neuropathy is. Tylenol takes the edge off. sometimes I feel like I have a sunburn and I don't. moving around helps. sitting or laying makes it worse. Going from hot to cold makes it worse. Drinking, for me, makes it worse.

Its funny, I read about 1/3 of the cases have no cause the other day. Good work medicine.

Let me know if you ever figure out what it is or what causes it.
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Re: Struggling with paraesthesia

Postby lcanela on August 19th, 2013, 4:27 am

I have had it for a long time, but now that you menction it, I dont remember having it for a long period, or maybe I am just not aware aymore.

Guys, really, stress, anxiety, bad sleeping... avoid all of that. just live a normall life, forget about this BFS stuff, we are not dying because of this, but we will all die eventually,so, just enjoy your life.


My advice: Practice any sport that you like doing, in order to release stress, even yoga or somethig like that will help you a lot. try to smile all the time, try to be happy, and just forget about all of this.

Something else... if you work in front of a computer the whole day, please look after your posture and very important, stretch your cheast!!! look on youtube for how to sretch your chest, it helps a lot.

Regards!
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Re: Struggling with paraesthesia

Postby twitchinjohnny on August 19th, 2013, 4:00 pm

Thanks, muppetdog and Icanela, for your replies. There is much good "food for thought" in your posts. I'm sure that I will reread everyone's replies more than once. While I try not to obsess about this stuff, it's still nice to be able to commiserate with folks who are pretty much in the boat! That's the great thing about this board.

Not too long ago, I must have been mired in a state of anxiety and gloom, because a colleague of mine told me, "why don't you spend a little more time living instead of worrying about dying." Good advice!!!!

John
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Re: Struggling with paraesthesia

Postby Arkansan on August 19th, 2013, 5:26 pm

Full blown tingler here! Constantly, hands and feet are the worst, left hand and right foot in particular, the hand if I open and close it is almost a guarantee. It has ramped up lately fore too but I seem to recall having a good bit of it from the get go.
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Re: Struggling with paraesthesia

Postby jennract on August 19th, 2013, 7:40 pm

Hi there. I don't check the boards too often anymore but I too have been having the tingly, itchy prickly skin thing again for about the last week. Twitching has been very minimal- mostly in the calves but nothing like it used to be. I still get annoyed with this sensory stuff and start worrying or looking for other explanations which never helps. I'm wondering if in any way its related to my seasonal allergies which are ramping up now as well. Antihistamines don't really do anything for the "itch". Stress levels have been a bit increased lately.

I think next May will be 4 years for me and it does get better just so strange how it flares up from time to time.
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Re: Struggling with paraesthesia

Postby twitchinjohnny on August 21st, 2013, 6:04 pm

Thanks for your replies, Arkansan and jennract. Theories abound as to how much of our BFS related issues may be auto immune in origin. I'd be willing to bet that there might be some connection between the triggering of BFS symptom and those that we attribute to traditional seasonal allergies. I've been trying to figure out what triggers my issues. The more I keep track of my own day to day issues, and the more "research" that I conduct on my own, the more confused I become!

I'd settle for getting to the point where I can just ignore most of this stuff. It seems to be a bit of a roadblock in "getting on with one's life."

Oh, well..... thanks for the posts. Keep 'em coming!


John
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Re: Struggling with paraesthesia

Postby KateBN on August 24th, 2013, 7:52 pm

The tingling is my primary issue, the twitching, secondary. The paraesthesia for me is considerably worse when I'm stressed. It was at its worst by far when it was my sole focus. Horrible. Even then it would improve for brief periods when I was distracted.
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Re: Struggling with paraesthesia

Postby twitchinjohnny on August 25th, 2013, 7:45 pm

Thanks for your reply, KateBN.....

My paraesthesia are mostly in my feet and lower legs, for sure. I do, however, regularly experience some episodes of paraesthesia in my fingers, hands, arms and other places. I was wondering...... hope I'm not being too nosey..... what areas affect you the most? I'm still trying to figure out what's going on with my own situation. So far, the medical conclusion in my case is "a neuropathy of unknown origin." I'm not diabetic, and my history of alcohol consumption doesn't seem to be culpable. So....... all of my symptoms.... paraesthesia included, seemed to be "chalked-up" to BFS.

I concur that anxiety and stress seem to exacerbate the whole experience! When I'm uptight and obsessively worried, the fasciculations and paraesthesia seem to amp-up in a real direct fashion!

Thanks for your input!

John
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Re: Struggling with paraesthesia

Postby muppetdog on August 27th, 2013, 11:00 am

Twitchinjohnny -

What you described pretty much sounds like what I get to go through all the time. I am neither diabetic or a complete drunk, ether :)

So the neurologist don't know what's causing it? Great. Did they recommend any treatment for it? Has it gotten worse?

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Re: Struggling with paraesthesia

Postby twitchinjohnny on August 27th, 2013, 11:42 am

Thanks for your reply, muppetdog.....

My issues with paraesthesia began in ernest during the Summer of 2011. At first the symptoms came and went sporadically. By the Winter of that year, the symptoms were becoming more intense, widespread, and were occurring more frequently. In March of 2012, a neurologist sent me for an MRI of my cervical spine. The results of this test prompted her to rule-out MS as the cause of these paraesthesia. So, we left it at that for the time being.

By June of 2012, my issues with paraesthesia had pretty well backed-off, and it was then that I developed wide-spred muscle fasciculations. I went to a different neurologist in Sept. of 2012 (one who's a specialist in motor neuron disease). He examined me over the course of a few months, did an EMG, and ruled-out ALS. He gave me a dx of benign fasciculation syndrome. Then.... in March of this year (after many months of twitching) my paraesthesia issues returned with a vengeance. They still come and go on a rather unpredictable basis, however they seem more intense, annoying and painful than ever when they're "in gear."

So far, I haven't been offered any dx other than BFS, and therefore, no real suggestions for cure and/or treatment. I see this motor neuron disease specialist again in a few weeks. I plan to give him an ear-full about the paraesthesia problem along with my accompanying theories. For the time being, however, the cause of my paraesthesia is considered to be of an "idiopathic" (unknown) origin.

I know that this is a lot of "blah-blah-blah" that doesn't really shed any light on anything for anyone, but...... it's all I've got for now!

I'll let you know what my neuro says after I see him in September.

John
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Re: Struggling with paraesthesia

Postby KateBN on August 27th, 2013, 6:52 pm

It's mostly feet for me, particularly the left, sometimes up to the ankle (like right now). Then hands. I've experienced it on my scalp, below my shoulder blades, the roof of my mouth, the tip of my tongue, lips ... That's it for now. With the left foot tingling comes a sense of fatigue or weakness or stiffness in my calf and ankle. I don't like it, but I try not to focus on it or I will regret it. Easier said than done some days.
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Re: Struggling with paraesthesia

Postby TwitchyMark on August 29th, 2013, 1:40 pm

Hi, I don't know your age but I am 44 and have degenerative spine issues in my lumbar and c-spine. But my gp told me my C-MRI showed nothing. I finally went and got the report on my own and I did indeed have a moderate c5-c6 herniation with some nerve impingement but no stenosis visible. Also, I had a loss of lordosis (curvature) or "military neck" which can lead to a worsening of the disc flattening and decreased space in the spinal canal. If I just went with what my gp said, I would not have known about those issues. The neurologist dismissed it as well. But I was indeed feeling neck pain, neck weakness and paresthesias into my arms and hands as well as in my legs which has since largely subsided. Who knows if it was indeed myelopathy and radiculopathy to blame and BFS just exacerbated things or if it was all BFS. But my docs never seemed to seriously consider spine issues. If a possible cause is incorrectly dismissed by our doctors, we are going to naturally search out some other, possibly more sinister, cause. I advise anyone to never take what any doctor says as the gospel truth.
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Re: Struggling with paraesthesia

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