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Can I live with this?

PostPosted: December 31st, 2012, 9:39 pm
by petloy
Hi, December 16 I had an episode of Right middle ear muscle spasms it lasted the whole day, I took flexiril 5 mg and it has subsided since then, last December 23 I had a muscle twitch on my right foot I took Flexeril 5 mg it seemed to help but then I had twitching in my legs, thighs, calves and abdomen since then., Last night I started to have twitching in my left eyelid, I went to my neurologist and will be scheduled for EMG next week, she told me that she thinks it's not ALS. My question is Can we live normally with this disorder? I am scared and the twitching in my legs I can manage, but it's the eyelids that seem to bother me more...I I just need some success stories right now.

Thanks
Peter

Re: Can I live with this?

PostPosted: January 1st, 2013, 12:11 pm
by raindog
petloy wrote:Hi, December 16 I had an episode of Right middle ear muscle spasms it lasted the whole day, I took flexiril 5 mg and it has subsided since then, last December 23 I had a muscle twitch on my right foot I took Flexeril 5 mg it seemed to help but then I had twitching in my legs, thighs, calves and abdomen since then., Last night I started to have twitching in my left eyelid, I went to my neurologist and will be scheduled for EMG next week, she told me that she thinks it's not ALS. My question is Can we live normally with this disorder? I am scared and the twitching in my legs I can manage, but it's the eyelids that seem to bother me more...I I just need some success stories right now.

Thanks
Peter


Can I live with this?

Answer YES

Re: Can I live with this?

PostPosted: January 5th, 2013, 10:06 am
by SuziQ
Can you live with this? Absolutely. BFS is not going to kill you.

Will you have a high quality of life? No reason why not, but it depends upon the severity of your symptoms, the efficacy of any treatment you receive, and your emotional state. We all have a different threshold for coping with stress and illness. Frankly, a lot of this condition is mind-over-matter. Anxiety over the symptoms also tends to escalate the symptoms severely, which of course, generates a vicious cycle.

We've seen folks with severe fascics and debilitating cramps whom have lived joyful, productive, blessed lives; and we've seen some with only minor symptoms who have felt miserable and hopeless. Each person is different. The degree to which one person copes better than another has nothing to do with one's fortitude, strength-of-character, or tenacity. It is highly subjective, random, and individualized; however, there are things that ALL of us can do to improve our outcomes. To the extent that you can take control of your thoughts and perceptions, you MUST do so. The body will do what the body will do, but your thoughts are the epicenter of all, I believe. If you can learn not to obsess over the symptoms and just go about your life, you will find this much easier to deal with.

It is also imperative for both your physical and mental well-being that you get yourself on a regular program of physical activity. It doesn't have to be strenuous, but it does need to be consistent. Walking, running, zumba, pilates, yoga, swimming, what-have-you; plus some form of strength training are really essential for keeping the body and mind on an even keel. A balanced diet, stress-management, sufficient rest, exercise; the prescription for ALL human beings as we bump through this life, of course apply here as well. Do what makes you feel as whole and healthy as possible, and set solid boundaries to preserve what is most sacred to you. That's all any one of us can really do.

Blessings,
Sue

Re: Can I live with this?

PostPosted: January 5th, 2013, 1:42 pm
by TwitchingDuck
Great post Suzie!

Re: Can I live with this?

PostPosted: January 6th, 2013, 8:27 pm
by paulhp
it started for me when i was just 17 ..... some people thought i was mad i even had to visit a psychiatrist who yes you guessed it said i needed anti depression pills ........ anyway i am now 37 and still have the same symptoms

It never gets better it just gets easier

Re: Can I live with this?

PostPosted: January 8th, 2013, 12:33 pm
by Bosley22
Hey petloy, feel free to stop by the bfs chatroom. there are twitchers there 24/7 to help you out when in need. http://us4.chatzy.com/Twitches-R-Us

Re: Can I live with this?

PostPosted: January 9th, 2013, 11:07 pm
by BFS-twitcher
Peter,

I am in the same boat as you. The random muscle twitch is no longer a concern to me. I brush it off very easily and ignore it. The eyelid twitching is what drives me crazy. Some days I think I have Parkinson's, some days I'm confident it's BFS. My eyes have been twitching since August 2012.

I read somewhere on this board that Gatorade helps and I drank tons of it for a week and it actually made it go away... 4 days after I stopped drinking Gatorade it was back to normal.

I get the eye twitch in both eyes randomly and sometimes at the same time. This is the biggest symptom I can relate to which has made my mind go on so many different directions. My PCP must think I am a hypochondriac and I actually don't blame him.

My latest symptom are my joints. They seem to crack and pop all day during normal everyday movement. It's as if all my joints in my body have been loosened or altered in some way.

I have been dealing with BFS for 14 months now and it has taken a toll on my psyche...

Your definitely now alone...

Re: Can I live with this?

PostPosted: January 9th, 2013, 11:17 pm
by BFSBurger
paulhp wrote:It never gets better it just gets easier

Well, I wouldn't take it that far. For most, it gets better, and even goes away.

Re: Can I live with this?

PostPosted: January 10th, 2013, 4:44 am
by chrissi
Hah well, I have faced this question 2 times before in my life, with things that were much more mentally painful and scary than BFS. There's only one answer to this question: yes. Because you have no choice. This question is absolutely irrelevant because you are already living with it my dear. And to be honest...you BFS symptoms sound VERY VERY moderate up to now. So they might well get worse for a while. But still then, you will be able to live with it. Why not? It is not your choice anyway, so you can as well accept it, erase that question from your mind and go on. BFS does not enable you, it is the anxiety that enables you. Maybe there are phases where the symptoms physically affect you , but then still this is temporary. Out of all diseases in the world, if you take away the anxiety, the physical part of BFS is not that bad.