My life with BFS( guest starring OCD and Medical Anxiety )

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My life with BFS( guest starring OCD and Medical Anxiety )

Postby Protoolsnerd on September 6th, 2013, 2:56 pm

My Experience with BFS:

Hey there fellow BFS'ers . My name is Aaron......and it twitch.........HI AARON !! heh. Ok now that I broke the ice , i'd like to tell my story in hopes that it will resonate with other new and established bfs'ers.

Like many of us , my journey started before BFS. It started with anxiety . About 5 years ago I had a massive panic attack. I had had little ones before , but normally , when you're supposed to. This one was at work and not in a time when it should have happened. I thought I was having a heart attack , I was dying …...It was so scary. I was in therapy within 5 days for it. The next 2 years of my life were spent trying to deal with my newly found disorder without medication. My family has a history of anxiety and things like that and I was resistant to start medication without trying first. Therapy did a great job on the panic disorder , but right behind it , when my mental door was open, OCD and Medical anxiety crept right in and made my brain its home. Before the twitching I had scares with many dif cancers ( none of which I had ) stomach issues ( no doubt caused by stress ) , and a few other things.

Then about 4 years ago my bicep started twitching ….....and it didn't stop. For nearly 3 weeks. So what did I do ? TO THE INTERNET !!!! It's helped me so many times before hasn't it. NO IT HASN”T!!! I'll say this now and i'll repeat it later on. DO NOT GOOGLE YOUR SYMPTOMS!! It never helps . I HAD cancer so many times because of it ...but I didn't ….. This time , what comes up ? ALS!!! OH MY GOD!!! I HAVE ALS!!! A 28 yr old with a twitching bicep has ALS one of the rarest diseases in existence . Is it terrible and scary as *beep*? Yes , but do we have it NO!!! What came next ? MS and Parkinsons . Not a benign condition i've never heard of . So I freaked out and I mean FREAKED OUT. Full on anxiety and panic and all that good stuff. I was lucky enough to get into a neuro and have an EMG and Nerve conduction study . Both of which were negative for anything .

Whew …..But did I accept this diagnosis ? Yes and no. My muscle stopped twitching , but the seed of doubt had been planted in my head . Something is wrong with me …..very very wrong.

A bit of time goes by between then and my next BFS symptom. My first finger twitch. My forefinger in my right hand started going NUTS. Back and forth seemingly of its own accord. Again I FREAKED OUT!!!!!!! Even more so then before. All the old fears....ALS, MS , PD and who knows what else. Enough was enough. I took some time , visited family and decided 2 things. 1 I need to get checked out by a neuro , more thoroughly and I need to start looking at medication for my anxiety. I go to an amazing neuro who actually took the time to listen to me and understood my fears. I had an MRI of the brain and a new EMG and nerve conduction study. All came back perfect. So my neuro tells me about BFS. Who what ? Did you say Benign?! BENIGN?! How could something that is doing allthis be benign. He then started to talk to me about managing my anxiety. I started that week on a low dose of Zoloft.

Zoloft saved my life. Almost literally. For a good couple years my anxiety was pretty much gone. My bfs had increased a bit , but nothing serious that really worried me. Random muscle twitches almost everywhere , but none that lasted very long. Then a couple years later , after a period of intense work and stress , my resistance to anxiety was lowered and I got a new twitch. OH NO A NEW TWITCH!! The classic thumb / thenar twitch. It freaked me out a bit, not like it would have before , but certainly put me in a little bit of an anxiety cycle. I also had some of the buzzing / tingling that time. Some dizziness. So I went back to my neuro to make sure it wasn't anything serious . Which it wasn't . He knew me very well by now and knew how to talk to me about what was going on. Even busted out the EMG to check a finger that was buzzing , just to make sure . Still nothing . Man , what our minds are capable of is amazing isn't it. Who knew it was so powerful?

So I calm down and accept my new twitches and moved on. We're now close the present. 3+ years since my BFS diagnosis and 3 years on the same 50 mg of Zoloft. I had since found aboutbfs.com wich was amazing. I wish I had found it sooner , but when we're in the middle of freaking out we're not looking for the most likely benign thing , no that's not how we operate. We end up on ALS forums or MS forums . National institute of health, mayo clinic , sights that are “ reputable “ but still wrong for us to be looking at .

After a smilar period of intense work and stress I new twitch started and it freaked me out , not big time, but enough to get my anxiety up and the shaking and anxiety cycle started. I'm scared cuz I shake, and I shake cuz i'm scared. This time is was positional finger shaking . It was so different from my usual bfs stuff , and having been on zoloft for this amount of time , its effectiveness may be less then I needed. Luckily I found a few posts on aboutbfs where people were describing their positional finger twitches and where Chrissi had the video of her fingers shaking . They were even worse then mine!!! I breathed a sigh of relief …...mostly . I still self check sometimes , look at other people's hands . But I STAY OFF GOOGLE !!!!!! When in doubt I go to aboutbfs first . Now it's ok to find out a rememdy for post nasal drip, but i'm BANNED from symptom searching. Take that as the gospel, it will NOT help you . EVER !!! EVER EVER EVER !!!!!!

So after 4 years or so of twitching , i'm still here. Still healthy , no weakness ( actual weakness , not assumed ) no atrophy , still twitching but i'm getting better about how I react to it. I'm probably going to be switching to Cymbalta soon . From what i've discussed with my sister and others it seems to do a better job for OCD and anxiety like I have . So i'm going to give that a shot. Now medication may not be the right course for you , but for me it was the right thing to do to be able to get my life back.

I hope my post will strike a chord with some readers, and let you know that you are NOT alone. Those posts by others certainly helped me . We're all in this together and there is a support system for you if you need it.
Protoolsnerd
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Re: My life with BFS( guest starring OCD and Medical Anxiety

Postby chrissi on September 6th, 2013, 3:19 pm

Hi:) I really enjoyed reading your post . I mean, you clearly have an anxiety problem, but it is great how you were able to maintain a great portion of humor during all this. Btw: my fingers are a lot better these days.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: My life with BFS( guest starring OCD and Medical Anxiety

Postby Protoolsnerd on September 6th, 2013, 3:44 pm

Thanks for that Chrissi. Your video def made me feel better. And yup anxiety is present in me , and i'm ok with it. Not happy about it, but hey that's life for ya. I'm happy to hear that your hands don't shake as much anymore. I'm optimistic that this will smooth itself out in time , or not who knows. It's a constant thing for me to just let it go. Yes i twitch, and will twitch. let it go........I'm thankful for all the vets like yourself who've been in our position and have helped all of us get through this .
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Re: My life with BFS( guest starring OCD and Medical Anxiety

Postby chrissi on September 7th, 2013, 2:30 am

Generally many BFSers have issues " letting go", not only with BFF stuff, but in many different parts of their life. I have posted about it a lot, but it is really worth it to go through SAMs posts if you have a bit of spare time. The posts are usually long because he knows a lot about good strategies and this is not just explained in a few words. But definately worth using the search function!
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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chrissi
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Re: My life with BFS( guest starring OCD and Medical Anxiety

Postby Protoolsnerd on September 7th, 2013, 2:19 pm

Thanks for the heads up Chrissi , i'll go check that out. I hope there are some people reading this that are getting some reassurance , that they are not alone .
Protoolsnerd
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Re: My life with BFS( guest starring OCD and Medical Anxiety

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