Jerry2 update: it's 8 months: not doing well but still alive

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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Seepi27 on June 17th, 2012, 4:06 pm

jerry2 wrote:Thank you for your thought. Yes, I do feel strongly some of my sllep phases are severely disturbed and that this may cause some of my problems. I believe it is the early morning phase, the dreaming phase. I don't relax at night I get tense and muscle aches and nerve problems like tingling over the limbs.

I have already found institute here that does the sleep study, mostly for apnea, although I don't believe I have apnea as my wife says I rarely snore.

I also have too vivid dreams mostly, more than normal time nightmares (not night terrors, just bad vivid dreams) and from such vivid dreams I wake up restless, like I was really there.

This theory is all good but taking a nap makes my hands go wrong is against it, in afternoon nap I don't think you have all the sllep phases. If you have dream one, than perhaps. I do hovewer unfortunately believe that most neurological diseases are not curable and that neurology is the part of health science doctors really can not do much. I mean, we don't even know why we need to sleep, don't we? I know they can "treat" aplen with a mask, but if you have vivid dreams with no medications, I don't think they can help you.

But yes, I'd like to come to sleep study, because I do think maybe there is something visible what happens to me when I sleep on EEG, EKG... I don't believe they will be able to treat me, but at least they will be maybe albe to see everything is not ok and I am not just a hypohondric.


But you are quite clearly a hypochondriac. Who on earth is bothered about vivid dreams, or would even countenance having sleep studies done because of them? Most people I know would kill for vivid dreams!

You are certainly a hypochondriac, because I am too, and like recognises like. There's nothing wrong with you apart from thinking there is, and I believe that goes for a lot of people here, including myself.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby german on June 17th, 2012, 7:02 pm

Jerry, when I worked ems ( 24 hour shifts) and we would get a call waking me in the middle of the night i would get the same symptoms. It was so bad that I would always consider telling my partner that i couldn't make it but i would just keep on walking and get to the truck and after a while it would die down a bit but not leave totally for a while. I would get very frequent episodes of numbness & tingling in my extremities during this time.
When I was experiencing these symptoms I be honest and admit i was severly struggling with anxiety and i can remember how it just stayed around. I feel for you. You sound very much like a fibro case. I'm not trying to label you but from the outside looking at you as a presenting patient i would in no way lean toward any of your symptoms being due to A??. Go to a fibro forum and read or ask some questions if you haven't had the chance. I just wanted you to know that as far as the body shaking and tremors, that is very often related to anxiety. No B.S., straight up. My sleep stuff did go away by the way but it was quite a while before it did.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 18th, 2012, 2:03 am

Seepi27 wrote:
jerry2 wrote:Thank you for your thought. Yes, I do feel strongly some of my sllep phases are severely disturbed and that this may cause some of my problems. I believe it is the early morning phase, the dreaming phase. I don't relax at night I get tense and muscle aches and nerve problems like tingling over the limbs.

I have already found institute here that does the sleep study, mostly for apnea, although I don't believe I have apnea as my wife says I rarely snore.

I also have too vivid dreams mostly, more than normal time nightmares (not night terrors, just bad vivid dreams) and from such vivid dreams I wake up restless, like I was really there.

This theory is all good but taking a nap makes my hands go wrong is against it, in afternoon nap I don't think you have all the sllep phases. If you have dream one, than perhaps. I do hovewer unfortunately believe that most neurological diseases are not curable and that neurology is the part of health science doctors really can not do much. I mean, we don't even know why we need to sleep, don't we? I know they can "treat" aplen with a mask, but if you have vivid dreams with no medications, I don't think they can help you.

But yes, I'd like to come to sleep study, because I do think maybe there is something visible what happens to me when I sleep on EEG, EKG... I don't believe they will be able to treat me, but at least they will be maybe albe to see everything is not ok and I am not just a hypohondric.


But you are quite clearly a hypochondriac. Who on earth is bothered about vivid dreams, or would even countenance having sleep studies done because of them? Most people I know would kill for vivid dreams!

You are certainly a hypochondriac, because I am too, and like recognises like. There's nothing wrong with you apart from thinking there is, and I believe that goes for a lot of people here, including myself.


You obviously didn't read my WHOLE post of my problems. Vivid dreams is not a problem, but it is part of what is happening to me during sleep. Sleep study is for other things. I don't have problem with vivid dreams, but I won't list my symptoms again as I did in the first post and long before that. Take a look if you are interested. Sleep study is my latest and miserable idea to get to the bottom of this...
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 18th, 2012, 2:05 am

german wrote:Jerry, when I worked ems ( 24 hour shifts) and we would get a call waking me in the middle of the night i would get the same symptoms. It was so bad that I would always consider telling my partner that i couldn't make it but i would just keep on walking and get to the truck and after a while it would die down a bit but not leave totally for a while. I would get very frequent episodes of numbness & tingling in my extremities during this time.
When I was experiencing these symptoms I be honest and admit i was severly struggling with anxiety and i can remember how it just stayed around. I feel for you. You sound very much like a fibro case. I'm not trying to label you but from the outside looking at you as a presenting patient i would in no way lean toward any of your symptoms being due to A??. Go to a fibro forum and read or ask some questions if you haven't had the chance. I just wanted you to know that as far as the body shaking and tremors, that is very often related to anxiety. No B.S., straight up. My sleep stuff did go away by the way but it was quite a while before it did.


Thanx. Actually I would be quite happy to get a "label" and to know what is the name of this sh...
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby volfan on June 18th, 2012, 7:41 am

Seepie - no offense, but I have vivid dreams and am very bothered by them. When they interfere with getting a good night's rest for me, I find I twitch a lot more the next day and I am not too happy about that. I do not consider myself a hypochondriac either. And yet for whatever reason, BFS has found its way to me. And although I don't worry or fret about it very much, I have my moments when I go to the "dark side". Then my Jedi sister swoops in and rescues me. As I have said many times, life is a journey and getting through BFS is as well. Each of us have to find our own path to the end and for some that path is a little rockier than for others. Peace...
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Seepi27 on June 18th, 2012, 3:26 pm

volfan wrote:Seepie - no offense, but I have vivid dreams and am very bothered by them. When they interfere with getting a good night's rest for me, I find I twitch a lot more the next day and I am not too happy about that. I do not consider myself a hypochondriac either. And yet for whatever reason, BFS has found its way to me. And although I don't worry or fret about it very much, I have my moments when I go to the "dark side". Then my Jedi sister swoops in and rescues me. As I have said many times, life is a journey and getting through BFS is as well. Each of us have to find our own path to the end and for some that path is a little rockier than for others. Peace...


Peace to you too. But in the great scheme of things, vivid dreams are as nothing. Sure, they may disrupt sleep, but thankfully they are not fatal. To add them to our list of worries seems to be heavily counter-productive, particularly since they are not part of *any* disease process.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 19th, 2012, 4:01 pm

Seepi27 wrote:
volfan wrote:Seepie - no offense, but I have vivid dreams and am very bothered by them. When they interfere with getting a good night's rest for me, I find I twitch a lot more the next day and I am not too happy about that. I do not consider myself a hypochondriac either. And yet for whatever reason, BFS has found its way to me. And although I don't worry or fret about it very much, I have my moments when I go to the "dark side". Then my Jedi sister swoops in and rescues me. As I have said many times, life is a journey and getting through BFS is as well. Each of us have to find our own path to the end and for some that path is a little rockier than for others. Peace...


Peace to you too. But in the great scheme of things, vivid dreams are as nothing. Sure, they may disrupt sleep, but thankfully they are not fatal. To add them to our list of worries seems to be heavily counter-productive, particularly since they are not part of *any* disease process.


That depends. If you have a vivid dream about a nice girl once a month it is ok. If you have every day a vivid dream about some bad thing and you wake up tired, it is not very good. And if this is in conjunction with your other problems, you want to know why.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby PetrifiedGuy33 on June 22nd, 2012, 7:11 pm

I came on this forum about the same time as Jerry, 8 months ago, when I thought my speech was slurring, I also had frequent fasciculations so I went to Google and you kenw what came up and the next few months after that were really really tough.

I listened to the advice on here from many people who had gone through the same thing, but I wasn't ready to believe it, I kept thinking my symptoms are real and there must be some explanation for it - I can't just dismiss it and whistle on happily into the sunset.

I remember one evening I kept on licking around my lips for hours because I thought I was dribbling, I would read articles aloud to myself to test my speech - my girlfriend thought I was nuts, I would go hopping and walking on my heels around my apartment block etc etc etc - every strange sensation I had during those "freak out" months I attributed to a potential sinister disease.

I still get fasciculations regularly, only difference is i don't pay attention to them anymore. I am busy, my mind is on other things now - too busy to get anxious. My body seems to have dismissed the old fear and now I have these PVCs or irregular heartbeats which I have had before and am having again - something I have also had tested and been cleared for.

You see the pattern here. Yes, we may die from a terrible disease or a heart problem but we also, most likely will not, we can choose to focus on the tiny likelihood it will happen and attribute every sensation our overcharged overconcentrated mind to the doomsday scenario or we can carry on with our lives and out the weird symptoms to one side and focus on far more important things like making our families happy or chilling with friends or finding a job or hobby you love - yes this advice is not something someone in full-on freakout mode needs to get over it, but it will happen, it's a matter of time - you are not a unique case. We are all humans and anything can happen to any of us at any particular time, most of us, however are wise enough not to let our minds paralyse ourselves before our body does. There are no guarantees in life so seeking one is foolish, you will never be 100% risk free from anything but your mind deserves better than the way you are forcing it to obsessively focus on something that has a 0.00000001% chance of happening. This mentality damages you, let it go, accept the symptoms, accept life while you have it. I know it's hard but you are killing yourself without any neuro-degenerative disorder having to do that work for you.

I know it's tough, I've been there, I don't dismiss the risk of anything, we all just have to realise that life should not be about focusing on death, especially when all the vast majority have are some weird nerve twitches and strange sensations here and there - I think the key task for most people on here and it is not easy is to get their minds focusing on something that will fulfill or stimulate them such that the health fears will fade into obscurity.

take 100 people and ask them to focus on their tongues all day and you'll get plenty saying there's a problem


tell 100 people their leg ain't working properly and ask them to focus on it all day and many of them will come back to you and say "well, you know what, I felt this thing and that thing"

the mind, the mind, the mind - it will take you where you want it to go and it deserves better from any of you that use it to focus on an incredibly rare disease that will almost certainly not affect you.

However if you want certainty then you will go nuts because it doesn't exist, and why are you looking for certainty anyway? we all die, why focus on ALS, why not get all freaked out about a possible apopcalypse or a martian invasion or your house burning down etc etc

Why? Because your mind has fooled you into thinking the symptoms are a constant reminder of something nasty on the way - they are not, you'll be ok, this is called life, try to live it while you can, these symptoms aren't worth it, let your mind have some peace now.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 23rd, 2012, 1:22 am

I could do all that with twitching, numbness and tingling and shaking hands. It is a problem with pain. I can not run, I can not ski, I can not carry weight around (I would like to make apartment in ceiling and I feel like I am crippled). I can not do all the things I want, it is not just a mind focusing game for me at least. You can (it is hard and I have not succeded yet) take your minf off twitching, because twitching doesn't cripple you, it "just" bothers. Pain makes you "ill" and you need to know why...
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby PetrifiedGuy33 on June 25th, 2012, 1:40 pm

my best bet is some fibromyalgia or auto immune related disorder, something hard to diagnose but i'd be very confident that it's not something really bad
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 26th, 2012, 1:55 am

As you mention wierd things. I went to vacation last week. I am self employed so my vacation is looking at computer if everything is ok with the server. Just wanted to say it is not stress at work and vacation is without it. It is same same somewhere, but last 2 years I do not really look at computer all the time, I get SMS if something is wrong.

Anyway, my pain in hand/ankles and nerve pain in foot is the same as at home, but my twitching was definitely down by 70%. 2 days were bad, but the rest was much better. Wierd hand problems during the night is still there, but I had 3 days with no hand shaking and no paresthesia during the night. I would say 30% better overall...

I got some allergy on vacation and they gave me a cortisone shot (I don't know exactly which one) and that day and the next day my twitching was down 90% and I didn't have any night problems with hands. Now it is back to "normal" and my foot pai worsens and my han problems are back.

Could there be a link with BFS and autoimmune system? Some environmental factor at home? Vacation for 14 days really can not reverse the years of some "poison" I guess... I am wondering if this can be true, but on the other hand I am still far from problem free on vacation so I guess the "poision" story is just a story. But I swim and move much more so maybe I don't feel so much twitching, but I would feel it during rest. My hotspot in hips was there for 2 days out of 14 days and it is daily at home.

But as you mentioned autoimmune diseases... But MS is autoimmune disease also, isn't it?
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Yuliasir on June 26th, 2012, 5:28 am

hi Jerry,
BFS seems to have autoimmune basis too, at least some autoimmune condtions, especially related to thyroid gland, might be accompanied with BFS.

Cortisole is strong anti-inflammatory agent, so your improvement under it might indicate a kind of chronic inflammation of muscle and neuronal tissue, not necessarily autoimmune however.

if you do not have specific leisons on MRI, then your chances for MS are also very low.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 26th, 2012, 6:49 am

The joint pain was not better, twitching was and buzzing also. Not pain.

They never sent me to MRI, so I don't know about lesions in brain, but I do believe I do not have MS, I have "just" limbs problems mostly... I don't have CNS problems associated with MS, I am "too old" and "male" although I know it can strike anybody.

I guess not only MS is autoimmune problem. I do have a strong immune system I guess, the cortisone shot (wanted to give me depo medrol but I refused medrol, they gave me some other "sulfa" drug), they told me my allergy will be gone for 14 days and it is slowly back in 2 days (and my ass stopped hurting by now because of the shot) ;-)

I was unplesantly surprised that my left hand thumb pain and my ankle pain was not better, but I guess that is no inflammation pain as it is not red and some days some times of the day it is better (when I move with joint a lot I guess) and 5 minutes later it is bad again, no inflammation can vary so much :-(

I don't know about my 24/7 foot arch twitching, I didn't feel it in slippers (no shoes at the sea) ;-), I didn't look for it and if I twitched and didn't notice it so be it. The twitching is still down by some 50% I think. Few bursts a day and occasional twitch that moves here and there...
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Yuliasir on June 26th, 2012, 9:49 am

I am a bit jealous my friend! you are sitting at the seashore!

there is still 2 month ahead of me before I can get to Porto :) and my daughter is driving me crazy working two days in a row till late hours, and for the next two days she again comes back very late so I had not proper sleep for a month already... twitching and sore hands :(((
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 26th, 2012, 12:06 pm

Yes I am sitting in a seashore in Karpathos, Greece :-) With sore feet but managed to swim for 1 hour like every evening. Now I go to eat stuffed tomatoes and pastitio ;-) I hope I didn't make you more jelaus :D When you will be at Porto, I will be working. And the world goes around.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

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