Read this story, I bet it sounds familiar.

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

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Read this story, I bet it sounds familiar.

Postby uber on May 19th, 2003, 4:09 pm

This is merely to do with symptoms and anxiety, not really those diagnosed with BFS, more for the worried folks. I have noticed a similar trend of people coming on to these boards...all have strange symptoms that seem to be the symptoms of about 4 or 5 Neruological conditions combined and cant ever put their finger on what it is. No doubt some of you guys will of been to see your GP and perhaps been to a Neurologist for Physical Tests, Blood Tests and maybe an MRI or EMG for those of you with more extreme symptoms (severe Vertigo, numbness etc).

Now it all starts with some strange problem, about 95% of the time you will have a bout of the flu or a bad cold and are left with the after effects, commonly known as post viral syndrome. PVS can cause so many neurological problems its just not worth going into them all. Now the normal person who is having PVS, will just feel under the weather and may notice a consistant twitching in the left leg, or strange sensory problems, they wont pay much attention to it at all, and 99% of the time it just goes away and never returns. But for the rest of us which refers to those who spend a lot of time on the net or the person who looks up "twitching" out of chance, you will be just starting your "self diagnoses" honeymoon and trust me (I think we all know) its a hell of a long honeymoon, and its not fun...not fun at all. You load up internet explorer, http://www.google.com and type the follwing symptoms: twitching, numbness, cramps, aches, pains, tremors, strange sensory symptoms etc etc etc. Now this is where it gets scary, cause on the net all that comes back is MS, ALS, ME, PD, HIV etc etc the list of diseases just goes on and on. Now this is where the panic starts to hit (for some of us), you read up the symptoms and start to convince yourself you have it, but I can gurantee you almost 100% no matter what illness you are looking up, there is always inconsistant symptoms to what you have, nothing ever seems to match with how you are feeling and your strange symptoms.

By now you are so anxious and worried you have ran off to your GP and have begged for a refferal to your neurologist. You see your neuro and your tests have came back normal. Your neuro tells you, that you either have some benign problem, either BFS, Post Viral Syndrome and of course the classic culprit 99% of the time...Anxiety.

So where do you go from here??? You cant find any definate answers over the net and your neurologist cant give you any definate answers (at least not the answers you WANT to hear).

Your friends, family and more than likely your GP and Neuro are telling you its "in your head" and you're not too sure what to make of that, as you know you're not imagining these things happening.

Well lets talk about "in your head" syndrome. How much do you sit and think about your symptoms?? how often do you panic everytime you drop something?? how many hours a day do you sit and think (most of the time sub-concious thinking) about what COULD be wrong with you?? do you feel like you are physically dying?? as if some disease is rotting away and every twitch, ache, pain, tremor or mistake you make is all part of some sinister disease that the doctors have failed to find?? Well how much of this is all in your head?? or to put it better "how much of this is made worse by your head?"

Well lets do a simple test, while you have been reading this (assuming you arent standing), have you been concious that you are sitting on a seat?? Think about it now, think hard, does the seat start to feel uncomfertable?? can you feel it digging in?? think about it for 5 more mins, I bet that seat is starting to feel pretty uncomfertable, think about it 20 mins, I bet its starting to feel painful sitting on that seat now. Wanna do another test?? put your hand flat on your desk...keep looking at it, feel it pressing tighter and tighter on the desk...see how long you can keep it there before your hand starts to hurt and feel really uncomfertable. Now apply this formula to people like us, who sit all day worried about every twitch, and every tremor...the more we think about it the more it happens...and in the end you have been thinking about it so much that you start to get a real problem where you are thinking sub conciously. This is where you are starting to loose total control of the situation, your anxiety levels are through the roof and your sub concious thinking makes it so your brain tells your body to feel every twitch, what used to be a minor muscle ache in the leg, is now a severe muscle ache in the leg, what was an occasional twitch is now a constant twitch etc etc. The term for this is psychosomatic anxiety, and im sorry to tell you all, but im willing to bet a big majority of people coming to these boards have it, and im even more sorry to tell you all that it is truly "in your head" syndrome.

But lets not take it lightly, just cause its in your head doesnt mean you have total control of it..at least any immediate control, in a lot of ways its a lot harder to deal with than MS or PD for example...sure it wont kill you like ALS etc, but when you think about it...would it be all that worse if your symptoms turn out to be something like MS instead of just anxiety?? You worry that all these neuro diseases are so bad cause you will end up disabled or dead, but really...will it be any different to how you have felt since you started that self diagnoses honeymoon?? If you are like me, ive never been more disabled or felt more dead in my life, like I have over these past 5 month, Ive hardly gone outside, nearly lost my girlfriend not even thought once about going to work or getting involved in any fitness activities, and im still not out of the slump yet, but im gonna crawl my way back up, and I hope that this post has made some of you guys realise that you can do the same too.
Last edited by uber on May 20th, 2003, 3:44 am, edited 1 time in total.
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Postby reneeintx on May 19th, 2003, 6:10 pm

Uber~

What a emotionally charged post, but great none the less. Describes me to a tee. I've been twitching for nearly 6 months and I did have that "death and doom" feeling you describe. I'm trying to take Jen's approach on this..live today because tomarrow may never come.

Honestly if I do ever get diagnosed with some dibilitating disease or even a terminal one, I can say at least I lived my life like I wanted to with no regrets.

Just a couple of months ago, I could care less about going outside or treating myself to a little something. But I thought what's the use, if I have ALS there's nothing that can be done anyway, except treat the symptoms.

Uber, you will emerge on the other side of this crappy BFS stuff. I can sense it in your post.

Like Jen said, "don't focus on the twitches", and you may find that they decrease in number.

Remember at least the doc's say we don't have ALS. I'm just as frustrated as you are. The doc's basically have put us on the unknown shelf and who knows how long we will be there.

Chin up Uber :)

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Postby KERRI on May 19th, 2003, 6:30 pm

reneeintx wrote:Uber~

What a emotionally charged post, but great none the less. Describes me to a tee. I've been twitching for nearly 6 months and I did have that "death and doom" feeling you describe. I'm trying to take Jen's approach on this..live today because tomarrow may never come.

Honestly if I do ever get diagnosed with some dibilitating disease or even a terminal one, I can say at least I lived my life like I wanted to with no regrets.

Just a couple of months ago, I could care less about going outside or treating myself to a little something. But I thought what's the use, if I have ALS there's nothing that can be done anyway, except treat the symptoms.

Uber, you will emerge on the other side of this crappy BFS stuff. I can sense it in your post.

Like Jen said, "don't focus on the twitches", and you may find that they decrease in number.

Remember at least the doc's say we don't have ALS. I'm just as frustrated as you are. The doc's basically have put us on the unknown shelf and who knows how long we will be there.

Chin up Uber :)

Renee



This post is so true.

Thanks Uber

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Postby Jenn311 on May 19th, 2003, 8:23 pm

Hey Uber...

What a great post! You have come such a long way and I am really proud of you! You are an inspiration to all of us. I agree whole-heartedly with your analysis!
Keep up the love...
~Jen
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