New Here, BFS Progress Update

[GizmoTechHQ]

Hello everyone,

I don't know why I came to this website today. I think I was just bored. Some of you may remember me from the past.

I had BFS symtoms many many months ago, almost a year ago. It went on for about 4 months heavily. It was fueld by my worry. I was more worried than almost anyone at the time. As a promise I made, I continue to post my progress. I almost decided to just move on today without a post but I was sad to see ytewestGo99 is still worrying about this. The guy probably can bench twice as much as me and run twice as far, yet he is still struggling with this. It made me want to post to tell everyone this BFS thing is nothing at all to worry about.

Twitching is not even thought about anymore. Sometimes I notice something, but I even almost forgot the name "BFS". I am here to tell you that this sydrome is something mostly psychological. The more that you worry, the more you watch your body. The more you scan your body like a radar, the more you notice small nothings. The more you notice, the more you worry. The cycle feeds on itself. What you must do is BREAK FREE from the cycle. I did this by joining activities, listening to music, drinking alcohol in moderation, and exercising. I talked to my wife. Do what works for you. What worked for me probably won't work for you. If it takes bunjee jumping and ice swimming do that. Nobody cares. I even ACHIEVED a goal in my own studies and research which seemed impossible a year ago when I was struggling. My life is normal and happy now. I don't worry about death like a did before. We will all be 6 ft. under soon enough, trust me. My favorite actor John Inman died yesterday. Nobody escapes. There is no reason to worry about the how and when. Enjoy your time in the present. Dwelling on your future demise is pointless, especially when you keep guessing at problems that BFS might make you THINK you have. BFS stands for Bull F***ing Sh** as far as I am concerned at this point. When I know I got something serious without a doubt, then I will worry.

You got BFS. So do I. It is nothing at all to me. In fact almost everyone I talked to said they have had these types of symptoms before. The thing that makes it different between us BFS GURUS and them is that we are worrying about it, which feeds that cycle I described above.

Break the cycle you are on folks, epsecially if you have already been to the doctor. You need to see a psychologist if you are still worrying and not moving on with life. BFS is not the problem, it is the mind. That is what I figured out about all this.

I hope this helps some of you. Attack the anxiety/stress, and everything else will return to normal. Control your mind. It can be done with time and patience.

- V

 

[paulrational]

Rubbish, i dont know anyone throughout my life whose had fascics in their calves like i do,in fact most people with real BFS on this forum will eventually find out what the underlining problem is, it aint twichy muscle syndrome.Also my anxiety or worry dosent effect the symtoms what so ever, the twitches you have must be the ones everyone has.You cant blame anyone for worrying when they have symtoms that are the same as something terrifying, only time will make any difference to us all.

 

[LisaQ.]

Hi V,
I'm like you; for me the anxiety definitely makes the symptoms much worse.

There are occasions however, (like right now, ugh,) when my symptoms seem to flare, unrelated to any sort of stress in my life, but as long as I don't stress OVER the symptoms, I seem to be able to get through the flares without too much focus on them.

Thanks for checking back in and sharing your success. It is always good to hear from an old friend. I'm so glad you're doing well.

Blessings,
Sue

 

[LisaQ.]

Hey Jenn,
I don't think V was inferring that all twitching is anxiety, I think the point was that the anxiety over the symptoms (and what they might mean in a potentially sinister, life-or-death sense,) and hyper-focus on our bodies makes the symptoms much worse. Most of us would agree that this is true.

For some of us, (like my husband, who also has bfs,) the twitching happens, but is no biggie. Some of us have a higher threshold for pain, as well. I can't determine if my husband's twitches are more or less bothersome than my own, because I'm not living in his body. All I can do is figure out how to deal with my own symptoms.

I used to completely freak out over various stuff that was going on in my body, weakness, tremors, etc. I would ask hubby, "have you ever felt this, have you ever felt that?" and he would chuckle at me, and say, (ever-so patiently because I had already asked him the same question fifty times that day,) "YES I've felt that, I get that all the time."

It didn't phase him, but at the time, it totally freaked me out. As V said, it was a non-issue for my husband, and now, with time and perspective, it has become a non-issue for me as well.

Yes, some of us do seem much worse than others. Some twitch all day, some have cramps, some of us tremor and vibrate and shake. And none of us has the right to judge someone else based on their tolerance (or not) of their own symptoms. We can, however all agree that anxiety doesn't help. I believe that is all that V is saying here. In many cases, if the anxiety can get under control, the symptoms nearly disappear, or significantly diminish.

I for one am always grateful to hear from someone coping with this thing victoriously. It gives me hope for the rest of us.

Blessings,
Sue

 

[Somethingylikeybilly]

I'm with V-tech on this one. Once you get used to the symptoms you basically just move on like anything else. There's no sense fighting something you can't control. Our hearts beat thousands of times each day. Do we sit and pay attention to having this muscle thump in our chests all the time? No...because we know it is what it is and we're used to it. BFS is the same once you accept the situation. Good luck to all of you out there struggling with this strange phenomeon. But believe me, its not worth stressing over.

 

[sarahnicole]

I agree with V tech it is possible to get used to the twitching to the point were you barely notice them. It takes some time but "really" what choice do we have.

 

[eyennyGlimmer]

Yes, you can have the mind ignore the twitches but my point was this...If someone can make a statement and say that, "they talked to other people and most said they had these types of symptoms before." That is not BFS then, those people do not have BFS if they are having anxiety twitches. No doubt anxiety can make BFS symptoms worse, we all know that. BFS might be bullsh**, but it is real especially to the people that have the more severe PNHE. I hate writing on this thing at times like this because you cannot hear my tone,,,but my tone is ) ..God Bless..Jenn

 

[niakyScotty]

If I may, I think there is a need for balance, even on this discussion.
More evidence of the extremes of our lives, our positions, our existence, which is inevitable, but we have to work toward the middle.

Yes, there is a very good reason to attempt to not let this run our lives, to not let the anxiety take control, whether it exacerbated our symptoms, or causes strife at home, or keeps us from enjoying the short time we have on this earth. This is something we all wish for everyone; some of us have reached this point, and for some of us, it will take lots of time to get there. Through support, love, etc.

But of course, we also have to realize that BFS is a "catch all" term for symptoms that can and do have many different unknown etiologies. My "BFS" was sensory first, then twitching, and now I have serious muscle stuff going on (waiting on tests). Cripes if it was "just" twitching and some cramping, I'd move on. But I can't hold a milk carton right now. And this is after two years after a BFS diagnosis from a major university hospital. What BFS means you have a syndrome of cramping and fasciculations that are not pathogenic; the PHN moniker is closer to a certain kind of BFS that might be the start of the list that follows.

Someone else's twitching can be caused by thyroid problems, eventually found. Someone's else's by Lyme, by vitamin deficiency via absorption problems, some genetically spurred by mitochondrial defects, some provoked by environmental toxicity. etc. You may have been tested for all these, yes, and you get BFS, but my ID doc today told me he's seen dozens of folks, for example, have diagnosis of BFS that later turned out to be something more specific; he talked about how autoimmune disease, especially in men, takes a LONG time to manifest itself serologically even though you have the disease and the associated symptoms. Which is why I got another lupus panel today (his idea) and tests for cryoglobulins (had it once, and he told me it might have been a false negative...one never knows, according to him).

What we must be careful, if we are to provide true support, is accept the complexity of it all, including the original poster and the subsequent response.

We are all in this together, even if we are all suffering from something different etiologically. We share many of the same manifestations, of course, especially the tolls they take that we all know about and something we share in.

(and again, I include myself in the audience of this "lecture" on balance) It really helps me to write out what I need to believe in. It makes it more real......

 

[GamezDaneJones]

V,

Thanks for the encouragement and hope. I am glad that you've overcome the emotional aspect of this and that you've been able to get past the recurring symptoms. This is hope that I will one day also be able to put aside the twitches and live my life the best I can with the body I've been given.

I would also encourage you to temper your victory with the understanding that there are others who have more severe symptoms. They are no longer on the "holy bad, this could be <insert serious condition" that newbies like myself are wrestling with but rather having to deal with the day to day real physiological issues that are hampering their quality of life.

Thanks for your post and the time you've shared. I look forward to future posts from you.

-Dan

 

[Maveric007]

i think what i took from the initial comment, is that the longer you live with this crap and are constantly reassured by emgs, visits to neurologists, rheumatologists (all which i have personally experienced this past year) and finally start to have acceptance that this is not going to kill you, the less you start to notice the twitchng, buzzing, numbness, tingling (yes i still have it all). i just don't notice it as much these days, as i have become used to it, and every twitch (and i promise i twitch etc with the best of them) does not throw me into a panic. i am not as attuned to every wierd sensation in my body as i used to be.

i think that is what the initial post was gettting at, or at least what i took from it and identified with. i truly have not expeienced any physical change in my symptoms since day one (over a year ago) and, mind you have been undergoing great personal stress these days (mom has early onset ahzheimers, and i had a miscarriage last week while still dealing with 2 small children) honestly, i find that this kind of *hit that we all experience in out lives makes me notice the twitching LESS, as i don't have time to think about it anymore, you know?

positive thoughts for all,
mel