I try so hard, but it's only getting worse

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I try so hard, but it's only getting worse

Postby Carmen on May 17th, 2006, 9:28 am

I have twitches since many years, normally they are spread all over the body.

Since March I felt them more or less only in my left arm. It scares me to death and three weeks ago I went to a neuro. He made the normal exam, two EMGs and one NLS, everything was fine and the EMGs were both totally clean.

I thought the nightmare is over now, but it isn't, it's even worse. I developed weakness and musle pain in my arms and ellbows. So I called the neuro again and had second appointment. He told me the chance to have *** is 0%, he suspects a despression and wanted to put me on some medication. I told him I have to think about it, cause I am not really convinced.

Meanwhile sometimes my right arm twitches as well now. And I read in the internet that it oftens starts in one arm and spreads out afterwards to the other. I can hardly control my anxiety. In the night I am dreaming about ***, can no longer relax, can not think of anything else, torture myself with searching the internet for *** symptoms. How can I go on like that? Does anybody has a tip for me PLEASE!!!

Thanks
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Postby puggriffey on May 17th, 2006, 10:44 am

It's going to sound too simple, but it's the only one that will work. You have to let go of the fear.

In November/December of last year, I went through yet another episode of extreme anxiety and panic about "new" symptoms I was having. They WERE REAL - fatigue, weakness, aches, lots of fascics, bulbar symptoms, neck "weakness" (it felt hard to keep my neck upright), etc. I ended up in the Mayo Clinic, and despite the fact everything felt so, so wrong, nothing came back abnormal, and all was deemed OK. It didn't feel it, and I couldn't believe it, but what else was I going to do? The best medical insititution in the world had done a thorough check on me, and all was fine. Was I going to believe they were wrong?

Finally, I accepted the fact that despite my physical "problems", I had to get on top of the anxiety and fear. I sought therapy with a psychiatrist, and did a lot of searching for one who did holistic therapy - not just doling out drugs, but also talking and counseling and working on the problem, not just how to make it feel better. And while this process went on, and as my primary anxiety started to subside, my physical symptoms actually got WORSE for a while. Why?

Well, when you recognize what we are doing to our bodies - constant fight or flight, flushing TOXIC chemicals (adrenaline, cortisol, norepinepherine - when chronically exposed to the body become toxic) into our musculoskeletal systems, heightened blood pressure, etc., it's pretty obvious that this process which took some of us months or YEARS to produce cannot be unwound in a second - certainly not instantly after we "find out" we are OK. So, your body goes through a transitional period and adjusts - sometimes in ways that aren't pleasant, and possibly producing these "new" feelings/sypmtoms that we all dread and most struggle with. How many times have I said/heard on here that "if it were only the twitches, I'd be fine, but it's everything else that gets me..." No doubt true.

The tough part is pulling it together and convincing yourself that your body CAN be perfectly "normal" even with all these sensory/motor "problems" going on. PERFECTLY NORMAL, HEALTHY PEOPLE HAVE ENDLESS ARRAYS OF UNKNOWN FEELINGS, SYMPTOMS, SORE ARMS, WEAK KNEES, ETC. JUST LIKE WE DO - THEY JUST PROCESS THAT INFORMATION DIFFERENTLY, AND AVOID THE DOWNWARD SPIRAL OF FOCUS, WORRY, ANALYSIS AND FEAR THAT EXACERBATE THOSE MINOR, BENIGN "ISSUES" THAT CROP UP NOW AND THEN. What helps(ed) me is envisioning that there is no such thing as **S or *S or whatever you are afraid of. Then put yourself in a mindset of - what would I be thinking about this now if I didn't know about these potentially scary outcomes? Most often - I get to the point where I realize it would just be a sore leg, or a weird, annoying buzz, or whatever....at that point, it becomes easier to recall the time in your life before you knew/worried about all of this, and you can much more easily recognize how to get your mind out of this "trap" you feel you're in. At it's basic form, that is CBT with "training wheels", and if you practice and commit to it enough, you start to realize - hey, not everything has to be **S, and I am not necessarily destined to suffer from a fatal disease. Maybe I'm just having some aches and pains.

I hope that helps. I right now have a "sore, weak" right leg, with a ton of buzzing in the calf. There was once a time where this would have committed me to the **S in me - whoa is me downward spiral. It's still tough some days, but for the most part I can clearly see now that what I most likely have is a sore, weak-feeling leg, and I can react accordingly (rest it, ignore it, go on with life). And most of all - stop wasting precious time focused on it, and losing out on the living part. My best wishes that you can begin to do the same with your arm.

JG
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Postby alwaysworried on May 17th, 2006, 12:58 pm

:D You are correct!
What we have is a residual of stress hormones etc which needs time to disperse, after all how can we expect years of stress induced problems to rectify themselves overnight, you have made me feel a lot better.

Thanks.
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Postby Carmen on May 17th, 2006, 1:56 pm

Thanks very much puggriffey for your valueable answer.
You helped me a lot! I will re-read several times in order to get all details and act accordingly.

Again thanks!
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Postby puggriffey on May 17th, 2006, 6:44 pm

Anytime -

Please take heart in the fact that (and all the vets on here can tell you this is true) it was just MONTHS ago that I was an absolute basket case, and overwhelmed with concern about new symptoms that were extraordinarily powerful and real. Just months later, they are largely gone, and the improvement is very very real!. I've got a ways to go to 100%, but in just a few short months, you can make incredible progress. Take a stab at starting today! You'll thank yourself for it.

Today I woke up and told myself - "I might feel weird or have some bodily 'problem' - it just is what it is - let it go and enjoy the day". And overall, I did it!! Something so simple sounding but so HARD - it is a night and day improvment over my old approach. You'll LOVE it, as so many vets on here do.

I am thankful for this board, and the ability to help. Life is getting better again - step by step.

JG
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Postby Carmen on May 18th, 2006, 12:34 am

JG,

what is meant by CBT, I googled the web, but couldn't find only Computer Based Training. I live in Germany, so maybe it is not known here. Can you let me know what it is?

Thanks
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Postby goblue on May 18th, 2006, 9:08 am

I believe CBT is 'Cognitive Behavioral Therapy"
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Postby puggriffey on May 18th, 2006, 11:19 am

Yes -

In a nutshell, it helps the patient zero in on a pattern of negative and/or catastrophic thinking. The patient recognizes that often, any sort of stimuli - be it physical symptom, stressful event, or sometimes just plain old life - is generally interpreted in its worst possible light, triggering anxiety and potentially more symptoms. Once this pattern is recognized, the patient trains themselves to recxognize the negative thinking and explore other potential interpretations, that are most often at least or MORE plausible than the one(s) being entertained. Be it a written list, or a repettive train of thought, the patient begins to form a habit of:

Recognizing negative thinking patterns
"Packaging" the fears and setting them asides as just that - potential fears
Exploring and identifying potential alternatives to the catastrophic conclusions being reached
Gaining repetitive experience that the other outcomes are not only possible, but likely, as they come to fruition time and time again.

That's it in an overly general nutshell. I found it to be even more convincing and useful in that my therapist and I are exploring:

What the life drivers might be for my negative thought patterns in the first place (i.e.: what is it about me and/or my past that stimulates me to think this way versus my wife who could have a leg fall off and not worry about it...)?

What are the feelings and/or emotions that are being suppressed and relaced by these physical symptoms I tend to experience (of course, there is acknowledgement that an organic cause such as BFS may be responsible for the core layer of symptoms, but that a big chunk of what recurs are of somatic origin - i.e.: my arm twitching is initially driven by BFS, but the pain, weakness, tingliness, et al that follows for weeks is a somatic response to the initial stimuli)

Why do I feel it necessary to see/have scientific and/or hard facts in front of me to buy into the alternative possibilities, and how can I reporgram my thinking to default to the benign alternatives without seeking endless reassurance and performing physical "checking/tests"? THIS ONE is still a work in progress, but I tell you - I can now see where the "normal" folks out there are just 180 degrees opposite from us in this one category alone. I don't think we are incapable of, or refuse to, explore other less harmful possiblities for what ails us, I just think many of us on here follow a "guilty until proven innocent" mind pathway versus by wife who assumes "innocent until proven guilty" if you know what I mean? If I can reprogram myself on this one area alone, I will be 95% of the way to a success - and progress is being made. MEDS HELP!! (I found 20mg 2x daily of BuSpar plus .5mg of Klonopin at bedtime to be the perfect "formula" for me, but we are all wired differently)

And the final one - repetitive outcomes confirming the alternatives...well, that'll just take time, but my guess is BFS will afford me many opportunities along the way to find out.

I think with this thing - it's gotta be viewed as a ride...bumpy at times...sometimes taking an unexpected/wrong turn...and hopefully a little rewarding along the way too...But a journey it is, and there's no sense wishing it away or wallowing in the fact that many of us might have an almost daily dose of "new" symptoms for a while. It's how we react to them, and choose to "de-prioritize them" relative to the more important facets of life, that will get us where we need to go with the least frustration, pain, and anger.

Hope that helps - smile and enjoy your day! :D

JG
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