Karen-
That's one of the few posts that would drag me back on here! Congrats to you and I hope your new found state of mind is a lasting one.
I am a 13 month twitcher, and can honestly say I'm past the fear now. It was a wild ride, and I'm sure it'll have its ups and downs, but life goes on and it's so sweet.
For those of you new here and going through the unbearable fear and anxiety, please know we REALLY have been where you are, and there really is a syndrome of unexplainable symptoms that can be quite severe, but WON'T kill you and WILL go away (or at least be far more manageable than they seem today). I love the growing numbers of us popping back in to tell the tale - all nearing or beyond that "infamous" 1 year mark.
In order of relevance, here are some things that really helped me out, now that I can look back on it:
SSRI - I ended up finding Lexapro to be the one for me, and I DID try a few with awful results (bad symptoms, etc.). Sticking with it though, and really enjoying the benefits of it, I can tell all of you flat out this guy needed a good healthy dose of Serotonin in the worst way. To feel your symptoms of depression/anxiety/whatever, wash away (poor sleep, general muscle tension, constant "nagging" negativity, stress, poor eating, etc.) was the single biggest step I think to true recovery. It is incredible to me now, looking back, at really how "off track" I had become, and the burden of lifting this 1000 pound gorilla around all day, every day, I'm SURE was contributing greatly to my symptoms. P.S.: I once left it home when traveling overseas, and couldn't get a replacement prescription filled - in just 10 days, I can tell you what a notciable difference there was, and my twitching returned worse when I hit the 8 day mark than it has since I started. I am one to listen more to my body than to the science - I know there is no definite link between stress and this stuff scientifically, but I know for me, it is a clear link...
Cognitive Therapy - I have gone for my last regular counseling session as of last month, and both me and my therapist were just incredibly amazed at how things have changed. First and foremost, this OCD sufferer is not afraid to admit that I may have tough psychological challenges that I've been dealing with for some time. True therapy doesn't dwell on why, or those mysterious causes that triggered my OCD, it starts with acceptance that many, MANY smart, grounded, healthy, successful, "normal" people struggle with difficult to explain mental issues - they just do. True therapy gets you past that stigma, to acceptance, and how to deal with it effectively. And let me tell you, in this humble person's opinion, it is worth every cent. I fought even the thought of therapy so hard, for so long, and now I regret it. I know how to recognize the situations and triggers that put me in difficult places, and how to prepare myself better for those things. I understand and recognize symptoms and flare-ups in their initial stages, not waiting for them to overwhelm me. And, like I said above, I am no longer afraid to let medicine help me - not define me, or control me, but help me get to where I want to be to live a happy, normal life. Why, oh why, did I wait so long and suffer so much - I just don't know. Probably pride.
Exercise - at first, after you haven't done it for a while and you've been twitching, this is almost a killer. It will AMAZE you how difficult a simple walk is, or lifting a suitcase. I can only surmise that it's because the twitching is fatiguing your muscles in some way...who knows (or the ocnstant stress). But walking, consistently, and doing light exercise regularly, breathes life back in you - in so many ways. And yes, when that walk's done, your muscles are firing on all cylinders, but it was mentally refreshing in a way to know why, and have some cause and effect to explain it. In fact, to this day, my twitching "relapses" still seem to be triggered by exertion - I lift something heavy, or I work out a little harder than normal.
Sports Drinks - I can't tell you why. Or even that I'm certain that they help. But when I have a bout of those shaky, twitchy days, I drink 2-3 per day and they do seem to help.
Acceptance and distance - It's hard for me to say, as this site was SO helpful for the darkest days...it feels so good to know you are not alone, and for that I will always be grateful. That said, true acceptance that yes, I have BFS (or whatever) and there may really be this thing that's unexplainable but totally BENIGN, was THE FIRST KEY to true recovery. And I went through a number of stages - a "pseudo-recovery", where I felt like I finally had beaten this thing, a terrible relapse, waxing and waning fear and dread, numbers of doctors' visits, etc. Then, like Karen said, it all of a sudden just lets you go. You feel it, you know it's different. It's almost like your body and mind just say enough is enough. But to get there, I had to stop checking in here. It was a constant reminder, and it always presented the slim chance that some new idiot poster would say something that would trigger just that little grain of doubt. It was amazing - qualified, incredibly experienced physicians would give me a clean bill of health, and it would all be undone by one "account" of someone with *** that may or may not be entirely true. So I just stopped, and with it came the ability to let my mind focus elsewhere. Blessed relief. I still check in time to time to see how my friends who were suffering when I was (Karen, Gary, Amy, Aaron, to name a few) are doing, but to get past this, I really think you've got to get past it all (and yes, I applaud those strong few who can persevere and keep giving support even when they are past the fear - you are heroes to me)
Today my left arm is twitching bad - very annoying. Instead of fearing it, jumping on the internet to try and diagnose/explain it, and letting it consume me, I package it up as a bad day, probably triggered by the stress I was under last week, or the touch of a stomach virus I had, or the lifting of boxes I did this weekend. Do I care to go beyond that much? No. Do I pretend everyone out there suffers from this annoyance? Absolutely not. But do I suffer from it? Yes. Will it kill me? No - no more likely than getting in a car wreck later today or the 3 (shame on me) Krispy Kremes I had for breakfast yesterday. That's recovery - that's where you get to folks. Your twitching may never subside, and you may never know what causes it, or be able to take a pill for it and have it magically go away. But if it is our cross to bear, then it is one that I will gladly accept, and thank God that it's as bad as it gets for me. Eventually you just realize - it's not that bad at all.
I wish all of you on here true peace of mind, and strength to move past this. You will be fine, and someday you'll live to tell about it.
JG
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