A Quick Stop In to Say Hi!!

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A Quick Stop In to Say Hi!!

Postby puggriffey on March 3rd, 2009, 1:35 am

Hey all-

I returned this evening to see the old place and drop an update your way. I am nearing my five year anniversary with these symptoms, and I wanted to drop in to report on things. I've been away for almost two years now.

Life is very, very good. I remember always wondering if "old timers" that came back and said similar things were sincere, or were just sugar coating things for our benefit. I can assure you that is an accurate report. I feel as good as I ever have, and am as physically fit and healthy (if not more so) than the day before I first googled twitching and sent my life into a temporary hell. I am a veteran of 7 (yes, 7!) EMG's, a full work up through Mayo in MN, and numerous Neuro, Endo and other "-Do" visits over three + years of constant worry and self examination. It was hell - I know you know the drill.

My update in a nutshell:

- Most days, twitch "free". I'm sure I twitch, and occasionally catch a small one consciously, but I believe I now twitch on these days as any other person does, myself included before the "fall"...

- I go through several periods where twitches in more numbers return. These are usally clusters of days ranging from 3 - 10 in length, and are clearly more "twitchy" than others.

- I have definitely narrowed down the "triggers" for these heightened periods:

- Trigger 1 (most often): they follow a period where I get way overtired, and don't get enough sleep. A series of long shifts with late nights for work, for example, especially if I have a pressing deadline (stress). But it doesn't always have to be stressful. I did two successive nights of neighborhood watch last month, for example, with little sleep both nights, and the next week was "twitchy".

- Trigger 2 (often): they appear right before, and then again right after a cold or illness. It's weird, but they seem to subside greatly DURING the cold, but they return full blown after. Again, this sometimes walks hand in hand with Trigger 1, especially if I don't get good sleep.

- Trigger 3 (sometimes): If I go through a period of extended non-activity (e.g.: sitting behind the desk all day for a several days), especially if it follows a period where I was VERY active, I will notice my muscles get twitchy, often in the areas I worked hardest when I was active (legs after running, for example). This isn't always the case - a lot of times rest is good, and almost always extended physical activity greatly subsides the twitches, even when I was still worried about them - I think because it makes you feel "healthier".

My "cure" was calming down. I went to therapy and got control over the things in my life I CAN control, and accepted those I can't (twitches are on that list). I also made some meaningful changes to the rat race lifestyle I was leading - I ate better and slowed down. I left a ridiculously stressful job and got my work/life balance straightened out. I prioritized sleep and physical activity. I accepted that this all may be a part of "me" for a long while, if not ever, and made peace with that. Most importantly, I just at some point finally let go of the worry and decided while I could never KNOW for certain, that this most likely WAS nothing, and that doing more worrying wasn't helping. It sounds so annoying when you're on the front side of this I KNOW, but trust me, before long, that will be your "remedy" too. I hope you can get there much sooner than I did - I sincerely regret the three years I wasted in constant worry over this, but I can't get them back. Maybe you can...

Overall, I still have muscle "issues". I fatigue a bit quicker doing normal things than I used to. I still get periodic buzzing, pins and needles, weird pains, etc. without explanation. I get sore a lot too - something I don't remember before all this, but then again, I was much younger. But overall, I am stronger than I was before (my lifting is better than ever, for example), there has been no functional deterioration whatsoever, and all systems are as normal as ever. That is no exaggeration.

Much of the non-twitching "weird stuff" you all are experiencing - the head fog, buzzing, thickness of speech, perceived weakness (and oh yes I know, there is nothing perceived feeling about it when it's at its worst - I had a day where I couldn't lift my hair brush to my head) - all of that is largely a byproduct of the stress brought on by the twitches, and not likely part and parcel with the physiological causes of the twitches themsleves. You can feel all of that melt away, and the real you return, very shortly after you get your mind past the worry - believe me. It is hard to realize just how much you are putting your body through when you are going through the unknown periods - the stress literally compounds the whole thing, and medications can't always recalibrate you (and sometimes add side effects of their own). I DO recommend using Klonopin as needed throughout your recovery to help you sleep and relax whenever you need to (within reason), as I do think that in many cases, including my own, it is simply too much to ask to get through this without help. It still helps me to this day if I'm having a really bad twitchy day to take a half a pill at bedtime and get solid sleep - without fail, my next day is golden.

Finally, what have I learned. In my dealings, and in the conversations I have had with two fellow sufferers (one of 22 years!), I believe:

- this is a syndrome brought on by an event/events that lead us to "overload our wiring". Fry the system, if you will. Whether it is an illness or virus, a period of elevated physical exertion or emotional stress, a reaction to a prescription or medication, a life event causing severe psychological and/or emotional trauma, a pregnancy, or other related things, something sets off a reaction in our body that causes a permanent imbalance in our system. While we still function normally over time, this imbalance basically means that future triggers bring on these responses again quicker and more pronounced than a non-BFS person.

- this condition actually "deconditions" the body during its initial course. whether it's muscles tired from all the excess activity, or more likely a result of the initial channel imbalances that likely spur this on, a plan to recondition the body with sound diet, reasonable and consistent exercise, and mental reconditioning through therapy or interaction with family/friends/etc. is probably a wise investment early on in your path with BFS.

- sleep, stress and immune reactions do play a role, and are leading triggers, both during the initial suffering period and the recovery period to follow. Prioritize sleep and take control of your life - ironically, this annoyance we're all dealing with may actually force many of us to take that seriously in ways we never imagined. It did for me, and I'm grateful for it.

- tongue twitches are very much benign too - had them myself this whole time, and am fine. The whole line of thought that these are more sinister than other types is pure myth. Also, "bulbar" symptoms crop up on this board this time of year en masse. Like clockwork. Right when sinus infections and allergies create minor inflammation and subtle changes in the sinuses and head that trigger all sorts of associated responses: thickened speech, neck twitches, tongue twitches and cramping, neck stiffness, pain and "fog" in the head, etc.

- I do not believe diet or exercise CAUSE this or directly treat it; however, I think responsible management and adherence to good practices in both areas help restore the body to a more normal response to future stressors that might trigger flare ups.

- I believe our major initial episodes DO produce a long-term impact in terms of more easily faitguable muscles and potentially more fatigue overall (my firend with this for 22 years said he never did get ALL of his youthful bounce and pep back), but NO permanent erosion of any movement, energy levels, strength (in fact, mine's better), endurance, flexibility, and/or motor skills. None.

- I believe the doctors were right all along - often in medical science, patients present with a symptom or constellation of symptoms that are real, but non-diagnosable. These idiopathic diseases (or conditions) are frustrating, annoying, and most often benign. In our case, A*S and other major causes for concern ARE indeed fairly well defined and easy to detect - they are not vague nor peripheral. They are not easy to overlook. I met the best of the best at the Mayo Clinic, and these doctors were confident that any trained neuro can easily spot problems, and the chances of missing the diagnosis if muscle twitching was related are nil. EMG just further confirms the already obvious.

- I believe what was worst for me was the feeling I was alone, and this board provided GREAT comfort. For those early on in this, you need it, it is of immense help and support and stay as long as you need. However, I feel most on here never really FULLY recovered until we left for a while. You just know it's time. And when it is, do so confidently. But there's no rush. It'll come in due time.

- Finally, work on accepting that this may be a "new normal" for you. In all honesty, I not only don't dwell on or think about the twitches when they arise anymore, I almost anticipate them as "part of me" now. They are, simply, part of who I am. And they really never annoy me anymore. Would life be simpler without them - undoubtedly. But they have not detracted one iota from my quality of life after my acceptance of them and this, and that's where you need to get. I spent so long worrying and wondering about when they'd go away, that I forgot to understand and accept that it is irrelevant one way or another if they do or don't. The main thing was, they were harmless, and in time, we all can live quite well with them or without them. By and large, my two friends with this rarely twitch anymore, and I sometimes do. Time heals this, but why waste it waiting?? You are already healed.

I wish you all the best. Love your family, excel at your job, help someone who is really in need. Control what you can control, and just sluff off the rest. Most of all - know this: the REAL YOU - the one you wonder even exists anymore (happy, confident, worry-free, "healthy") - is very much still there. Sitting right there, right now. I never thought it possible. I felt that the first day of twitching had inexorably changed me forever - "sickened me" permanently. Wrong, wrong, wrong. Now I know the self-imposed worry was holding me captive, and that was changing me for the worse, but that "me" I longed for never left, and was right there all along. Whether it twitches once in a while or not, that ME is as present as ever, and will be here for the long haul. Sounds cliche when you're in the heat of it, I know, but give yourself a gift tomorrow and really reflect on that - what if it IS really that simple?? And start from there. Maybe even give yourself a week away from this board and say "I'll think about this all again in one week, but for this week, I'm going to live as if none of this ever happened" and try it out. What do you have to lose?? Give up thinking about it for Lent. Be creative. You will get there...in no time flat.

Take care, and I'm off again for a long while. Thank you Aaron and Gary and the bunch who make this happen. What a wonderful place - my oasis in a storm. Fortunately for me, and for all of you, like all storms, this one passes and life rolls on.

Best wishes for continued good health -

puggriffey
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Re: A Quick Stop In to Say Hi!!

Postby MarioMangler on March 3rd, 2009, 2:28 am

Thanks a lot! What a great post.

I've only had BFS for 7 months, but I hope to join you on the "completely recovered" side of the dance floor very soon. Lucky for me, I've already reached the point where it just p*sses me off more than it actually worries me. Worry seemed to leave me a long time ago. I assume there's some sort of a mental recovery going on there. :lol:

Thanks for stopping by.
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 Quick Stop In to Say Hi!!

Postby May on March 3rd, 2009, 7:18 am

This is an excellent post! A most read!

Thank you so very much for this extremely encouraging update.

Regards,
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Re: A Quick Stop In to Say Hi!!

Postby ed73 on March 3rd, 2009, 10:06 am

Post of the month!

Thanks,

Eduardo
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TWITCH PRO SINCE JUL-08
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Re: A Quick Stop In to Say Hi!!

Postby Mendota on March 3rd, 2009, 10:31 am

Hi Puff,

I think you're right on the money as far as triggers. And everything else, for that matter. Most excellent post.

Everyone agrees: the trick is not to give in to the obsession, the compulsive seeking reassurance, and to just forget about your very real, but ultimately limited physical problem. "The only thing we have to fear is fear itself."

And you're also right about the limitations on the medical side. This is just the way it is.

I am still curious about one thing, though. Exactly how do so many people have the same severe anxiety reaction to the physical symptoms? I really wonder if a few search engine hits, no matter how scary, can by themselves produce such long-term and truly devastating psychological damage. This makes me think that there there is something going on that is sufficient to produce both twitching etc. AND anxiety. So you have people on these boards coming at it from the physical side talking about chemicals, and people coming at it from the psychological side, talking about relaxation, but I suspect that it isn't just one or the other. I do agree, however, that the thing we have by far more control over is the psychological side, and that's where our expectations and efforts should lie.

Good hearing from you.
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Re: A Quick Stop In to Say Hi!!

Postby SuziQ on March 3rd, 2009, 2:30 pm

(((( Pug )))))

My goodness, this must be oldtimer's month! (Not saying we're old, or anything... :wink: )

It is SO good to see your cyber face and hear how phenomenally well you are doing! You have no idea...(or perhaps you do, lol.) This post is SO timely. That same-old bulbar panic-wagon is circling the camp once more.

I had left for a long time, but I've been peeking in from time, to time, myself.

Yours is an incredible, amazing testimony that MANY people can benefit from hearing.

Blessings and hugs,
Sue
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Re: A Quick Stop In to Say Hi!!

Postby jro on March 3rd, 2009, 4:40 pm

Thanks for the great update. Could you say a little more about what your tongue twitches were or are like. This is the symptom that worries me the most. I've had it for 8 months along with all the rest. No weakness and clean EMGs but other tests do show nerve problems including severe sensory nerve damage so I know something is wrong but hopefully something that will get better, go away, or at least not get any worse.
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Re: A Quick Stop In to Say Hi!!

Postby Mendota on March 3rd, 2009, 11:57 pm

jro wrote:Thanks for the great update. Could you say a little more about what your tongue twitches were or are like. This is the symptom that worries me the most. I've had it for 8 months along with all the rest. No weakness and clean EMGs but other tests do show nerve problems including severe sensory nerve damage so I know something is wrong but hopefully something that will get better, go away, or at least not get any worse.


Ummm... I think the technical term is "bag of worms." Does your tongue look like a shriveled up bag of writhing worms? Someone correct me if I'm wrong about this. You, my friend, are stuck on scared. We've all been there. I'm not trying to be insulting. I've never gone to a neuro, just outlived the worst-case scenario. Every time you seek reassurance you're feeding this anxiety monster. I know, Basso would say something and everyone would go all gooey and feel wonderful. I don't have that gift. We really need Basso back. Or a Basso gnomic prose-poem generating Java applet.

Have you ever been scared about a different disease before? How did that turn out? Were you ever absolutely convinced (say before you went to a neuro) that you had a horrible disease? There are still bad days when my confidence level in disaster goes up to 80% but I know the difference between "knowing fearfully" and "knowing rationally." You got to come to terms rationally and then hang on to that no matter what lies your fear tells you. I'm a trial lawyer. The evidence that we are none of us in real danger is not just by a preponderance (which would allow you to win a multi-million dollar civil lawsuit) but beyond a reasonable doubt (the standard the law uses to send people to prison for the rest of their lives or even execute them). Whatever it is inside us that tells us we're doomed is a totally discredited witness by now. You're going to be fine.

If you have some time, why don't you go to the off-topic lounge and tell us about your hobbies and interests? We all ought to do that. We're more than the fearful bunny rabbits scrabbling for kibbles of reassurance from each other that we act like a lot of the time. I'd like to know more about a lot of the people here.
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Re: A Quick Stop In to Say Hi!!

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