A pep post...your favorite success stories!!!

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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 22nd, 2012, 4:23 am

Hi everybody,

I had a very shaky weekend with some good and a ton of bad BFS-moments.

Saturday I was feeling again like -well not a million, but rather like let' say- 10 000 bucks.

I got up early in the morning (well, don't sleep much, anyway... :-( ) took my fishing backpack and had a nice walk down to the lake (I live right next to one).

Only so much twitching, some intestinal trouble, but not too bad and not much muscle pain to speak of.

Then, I caught a pike, which is noteworthy as I have never caught ANY fish down there in quite a few attempts (I am a beginner and apart from all the legal theory I really don't know what the hell I am doing...).

Actually, I started this new hobby hoping for some stress relief and relaxation and a good reason to hang out at the lake. This was before this BFS crap started and it didn't help much in the prevention of it. It may, however, play a role in coping with it.

Anyhow, by the time I got back I was pretty elated and mildly fatigued as I had been fishing for a couple of hours.

Then I prepared the fish, had a nice sunbath afterwards and listened to the soccer games on radio and was really enjoying myself.

But the, kind of out of the blue my legs began to ache. Just slightly at the beginning, but over the course of 1-2 hours more and more.

Yesterday, I could hardly walk as my thighs and calves were not just sore and achy but were outright painful. There were painful spots along the muscles

I took a hot bath with epsom salt in the evening as I read somewhere on the forum that this might help. Don't know, it didn't hurt, so maybe I'll try again.

Today it's the same, soreness, aches and pain from sole to belly. :evil:

I walked to the office anyway and I get the very faint idea that some exercise helps the pain somewhat...just not too much of it.

Bottom line: I hate it, I hate it, I hate it any I want my life back.

So, I found quite nice story of a real oldtimer who DID get her life back, even after quite a long time.

She endured it for 7 seven years and at some point got better.


So folks, join me in remembering and realizing that there is absolutely justified hope no matter what the symptoms or course.

viewtopic.php?f=8&t=2415
You can't stop the waves, but you can learn to surf!
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 23rd, 2012, 3:57 am

Hi everybody,

I have nothing new to report today, just the good old twitching, buzzing, rumbling, sleep deprivation and pain.

So, I want to cross reference a post by BFSBurger and back his view on things.

viewtopic.php?f=4&t=18235

It really sucks, it takes a long time but in the end the vast majority, if not everyone gets better.

An as everyday I'll pitch in some more evidence for this notion.

viewtopic.php?f=5&t=1543
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 24th, 2012, 3:29 am

Hi,

nothing new to say, just some old story to share.

Be good everybody.


viewtopic.php?f=8&t=11095
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 26th, 2012, 3:49 am

Hi everybody,

I have another goodie for all of us, sending us all with some hope and optimism into the weekend.

Don't feel like repeating the same statements again.

Read and get your own opinion.

Heads up, everybody!

viewtopic.php?f=4&t=3121
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 27th, 2012, 4:29 pm

Hi everybody,

today was not good for me and I feel right out miserable.

I had a neuro exam on Thursday and he was actually rather thorough doing several EMGs (ughhh....that hurt!!) and nerve conduction tests (ugh...also hurt) and now he wants to give me the whole shebang...lumbar punction (cerebro-spinal fluid testing), bloodwork and MRI and to do that he sends me to a hospital for a couple of days.

Oooooph...gets me anxious again in an instant...would he get so much into it if he wasn't seriously concerned????!!!!

Well...maybe not, probably that's just the standard operating procedure for unclear cases...

...still...I am sh****** my pants...

But what's even worse is the muscle pain and fatique. :evil:

Is has continuously gotten worse over the last two weeks.

Today I could hardly climb the stairs from the basement and doing the shopping was really awful.

Man, if it keep progressing like that I will be bed- or wheelchair bound before christmas...

This slowly develops from annoying to debilitating.

Anyhow, I'm trying to stay positive...cause there isn't really much else to do about it.

And for this purpose I have another story.

I just GOT to believe that there is some relief waiting in the future, like in these stories. Even when the road towards relief is neckbreakingly tough and inhumanly long.

viewtopic.php?f=2&t=6283
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Re: A pep post...your favorite success stories!!!

Postby MarioMangler on October 27th, 2012, 5:37 pm

Just keep in mind that everyone's symptoms are worse this time of year. It happens like clockwork right around October every year. i don't know why, but just because your symptoms are bad now doesn't mean they will be in February. This is just sort of what happens around here. My symptoms suck right now too. Just like they did in October of 2011. Just like they did in October of 2010. Just like they did in October of 2009. etc. You just have to learn what the patterns are.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 28th, 2012, 1:54 am

Hey Mario,
thanks for your uplifting words, I have real need for those.
I guess that's what being an experienced veteran is all about.
You've seen it, you've been there, you know the patterns, you don't get freaked out by changes as easily.
Uncertainty and not knowing what lies ahead for me is the most difficult thing to deal with at the moment.
Of course, you never know what will happen in the future but then again, you normally do not experience such a rapid and quite extreme symptom development, either.
And the muscle pain is really killing me mentally.
Thanks again!
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 28th, 2012, 3:10 am

Hi everybody,

as it is sunday, I'll take a break from whining.

Things are what and how they are.

And they can get better...or else everybody can learn to deal and live with them.

The evidence list is growing.

viewtopic.php?f=4&t=17103&p=125876
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 29th, 2012, 6:12 am

Another good one.

I, for my part, can really use another good story, as my BFS has turned over the course of a weekend from annoying to right out debilitating.

Right now, I'm in a lot of pain and I can't walk.

The muscles in my thighs feel like painful knots of concrete and pin me to the chair...if not the bed, yet.

So, that's also something I have read about before in survivor's stories, but to be in those shoes is quite extreme, I have to say.
It's like very, very dark clouds have obscured my future and I am really anxious what's to become of me.

I still think it's BFS, but I have no idea how to handle this and to keep functioning in my life and job.

Still, others have experienced similar extreme symptoms and they managed to deal with them or found a way to get some relief.

So, insetad of automatically thinking the worst it is better to read another great story, giving hope some chance.

viewtopic.php?f=4&t=14261
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Re: A pep post...your favorite success stories!!!

Postby LApea on November 17th, 2012, 12:00 pm

A story very worthy of being here! :)

viewtopic.php?f=8&t=18364
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Re: A pep post...your favorite success stories!!!

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