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Re: Here I am again ...

PostPosted: March 31st, 2015, 3:26 pm
by Ghayes420
Hang in there Will. Your description of symtpoms are still well within the realm of BFS. This rollercoaster is a crappy ride. Hang on, it will get better!

I have met up with a few BFS'ers. All great people. Good luck!

Re: Here I am again ...

PostPosted: April 1st, 2015, 9:26 am
by will97
Thanks Greg, trying to hang in there ... but its been tough and still is ... twitches still there in fore arm and weird feelings in my face and body as well :(

I really hope that this stays benign ... and that I can get a break from all this crap ... on top of this I am meant to have surgery on my right knee in a month as I tore my ACL and my meniscus in my knee playing hockey about 5 months ago ... and the rehab is meant to be quite long ... (9-12 months) and I know that I will have muscle atrophy and weakness in my right leg ... but I am so scared that this atrophy will play with my mind even more and that on top of rehab I will be quite anxious about the more serious disease :(

I wish to be stronger, I really do ... some days I must say that I feel like giving up but I really love life and my familly so I am trying my darn best to get over my fears and move on with my life ... but saying that and doing that are two whole different ball games!!!

Re: Here I am again ...

PostPosted: April 1st, 2015, 2:21 pm
by Ghayes420
I hear the pain in your writing and it makes me sad. It makes me hate BFS even more than I already do.

Don't give up, don't even think about it. If you are dying from a terminal illness and want to give up fine by me. I would too. But to give up over some fear and anxiety is not acceptable. Not acceptable to your wife and kids either. So until then, distract yourself and find the help you need through therapy and medication.

You aren't alone. If you think you are you are delusional. You are not alone.

Body check BFS hard into the boards and keep on skating!

Re: Here I am again ...

PostPosted: April 1st, 2015, 2:40 pm
by Buzznerd123

Re: Here I am again ...

PostPosted: April 2nd, 2015, 8:34 am
by will97
Thnaks guys, its really nice to have your support ... I really appreciate it. Unfortunaltely my fore arm is still firing away as it has been and it doesnt seem to be letting down and I have so much pain in that area ... like if teh muscle would be atrophying (btw, is there any pain associated with muscle atrophy?)... in addition to that, my left thigh muscle (on the outside knee) has started twitiching away since yesterday morning ... maybe its all the added stress .. and I also have started twitching in the right thigh this morning ... to add to all that mess I have been having twitches in my face area (chin and cheek) ... oh and then there is that inner vibrating sensation along with twitching in my upper back and left deltoid area ... so bottom line ... I am a train wreck waiting to happen

Thanks for the tips Buzznerd123, I wish I could go for a run, for a bike ride, play hockey or anything but my ACL is torn in my knee so I cannot really do much at the moment ... I am getting operated on April 30th to replace the ligament in my right knee.

and you are right Greg, I am in pain ... and I am waking up each orning hoping and wishing that this will all clear up somehow with a miracle or with a magic spell :) ... anyone know a magic trick to make this crap disapere??? :mrgreen:

I hope that the long Easter Holiday will do me some good and that I will be doing better ... I really hope that it will get better again somehow!!!

Re: Here I am again ...

PostPosted: April 8th, 2015, 7:02 am
by crotwich
bobajojo wrote:I hear ya Cro.

Can I ask, how often do you feel them above your waist? Mine used to be primarily in my calves with random pops everywhere else but now my upper body is constant. Sucks.


Hi Matt,

Sorry for my late reply. I would say that approximately 80% of fasics that I can feel are below my waist. Calves and feet go continuously (as bananas, as you would say). :)

As for above my waist, I can feel one in every 10-30 seconds. I feel like I'm plugged into some power station and I am just 9 months into this *beep*...

Will, sorry for hijacking your thread, I hope you already feel better. As you see, there are few of us with similar symptoms, so hang in there.

Re: Here I am again ...

PostPosted: April 8th, 2015, 1:47 pm
by will97
It's about a month that my forearm has been twitching ... its not a hot spot as it doesnt tiwtch non-stop. They are very fine twitches that I can feel and that I can see when my arm is resting against something hard (like a desk or my leg).

It's freaking me out ... why?
1) Because I also have pain with it and there is a tightening feeling in the arm as if the muscle is beeing stretched or pulled. When I make a turning movement with my wrist I feel and hear the muscle as if its being damaged
2) Because I have read and read again that ALS twitching stays in one spot and destroys the muscle before moving to another area ... and this is what I think is happening to me now
3) Because I truely believe that my forearm is weaker and that I have some atrophy ... I am right handed so it should be my strong hand but its not anymore ... I am struggling with some finger movements
4) Because I am really convinced that what I have is not just BFS anymore :(

I just dont know what to do anymore ... I am on the verge of giving up any hope that I had left ... I truely feel like crying and just giving all this crap up!!!

Sorry for my negative message but seriously, I am so frigthened

Re: Here I am again ...

PostPosted: April 8th, 2015, 9:18 pm
by Ghayes420
Bro relax...

Everything you have written is nothing I haven't experienced myself.

I once had an 8 week left bicep twitch. It was big thumpers combined with small fireworks style twitching that would go even when I flexed.

1.) yes, it was painful and caused a pulling like sensation. I tried to grab a dumbbell and Reo out curls to kill it. Bad idea, the bicep burned and burned for three weeks. I thought that was the end.
2.) sometimes ALS works that way with focal twitching sometimes it does not. To speak of ALS in absolutes is absolutely incorrect. In the case when this does begin this way, it certainly would be mega rare for it to happen after three years of bodywide fascics then go focal.
3.) just because you think it is week, doesn't mean it is clinically weak. Two totally different things. You have 'perceived' weakness, totally normal for anxious BFS folks.
4.) so does nearly every person who starts a topic on here.

Go ahead and cry your ass off. After that, get control of your thoughts. See a specialist if you need to and out your fears to bed. You can win this in the end. It's tough. Hang in there Will.

Re: Here I am again ...

PostPosted: April 9th, 2015, 2:13 pm
by will97
Thanks for your reply Greg ... I am going for my first CBT appointment tomorrow, its an evaluation session but I am going to give this a try as it cant really hurt me can it now.

I have been having incredible vibrations/small twitches/buzzing that I cannot see on my chin area (and just under the lower lip area) and my toungue as well has been twitching like crazy as well ... my toungue twitches when it is resting in my mouth and also when I stick it out ... My toungue just feels so heavy ... I see the twitches and they are kind of like small fibralations and also wavy twitches ... Is this normal? could it be bulbar seeing that I have that annoying twitch in my left deltoid that I can feel (ohg I feel them) but that I cannot see?

I feel like this is just a really bad dream and that I need to wake up already!!!

Greg, once again thanks so much for your replies ... the forum seems to be much quieter that it used to be ... dont see to many members giving their input but maybe tahts a good sign that people are doing better over all :)

Re: Here I am again ...

PostPosted: April 9th, 2015, 3:02 pm
by Ghayes420
you haven't seen many replies or responses because the webmaster has not been approving new members. That's to only reason.

Hang in there. Go and see a trained neuromuscular specialist if you have doubt and let him tell you that you are an anxious wreck. Maybe that will make you feel better in the end.

You are not different than the rest of us.

Re: Here I am again ...

PostPosted: April 10th, 2015, 6:20 pm
by jcmommie
Hi Will,

I recognize this level of panic as I had it 6 yrs ago. Honestly, you may need to consider an antidepressant/anti-anxiety med with the CBT. I was on zoloft for about 3 yrs and was able to successfully wean off when I was able to cope with the unknown better. There is no shame or failure in needing some pharmacological help. As was already stated, you may need another neurologist to reassure you before October. No shame there, either.

I also wanted to ask you about supplements. Do you take magnesium? 400 mg at night may help with sleep and cramping. Also, getting enough fluids, potassium & sodium is important. Gatorade works, one a day or extra if you work out, and plenty of water.

This level of stress can be hard on a marriage. I went to counseling and pulled my husband in for a few sessions. I was able to share my fears and we came up with ways to communicate that helped me to distract or redirect myself when I became very anxious. Hang in there!

Re: Here I am again ...

PostPosted: April 13th, 2015, 12:18 pm
by will97
Hi JCMommie,

Thanks for the reply. I do appreciate hearing from others who lived or are living similar situations as I am ... liek I said, I know we all have ups and downs ... but wow what a down I am in ... I wish to just shake it off!!!

I still have those twitches in my fore-arm ... as mentionned many times, I dont necesseraly see them or feel them all the time, but my fore-arm feels stiff, as if the muscle was being stretched out ... There is also some pain and discomfort associated with this ... and know my muscle near the shin area has the same thing ... the muscle feels weaker and like its being stretched out ... not cool!!!

I went for an evaluation session on Friday at a CBT clinic, they told me that they believe that they can help cases like mine, but they need to get back to me within the next 2-3 weeks ... I sure hope that they can but I just feel as if my problem is not in my head but in my body :( I understand what you are saying about having your husband some in some of the sessions, but my wife knows my fears and I think that the problem is that she came to all my EMG appts and all my appts with the neurologists and my last neurologist said ''you dont have ALS I am 99% sure of it'' what you need is some help through counseling or with some meds ... so my wife keeps telling me ''you heard the doctor so you need to stop focusing on that'' ... so I know that she has been there for me the past 3 years, but I know it was hard on her as well and she just wants to snap out of it ... but the problem is taht I too would liek to snap my fingers and make all this maddness go away and live my life and enjoy life, as I used to ... but easier said than done right?

In regards to Zoloft, how did you find that pill and did you have a hard time getting off it? I read that its a powerful drug and that it has quite a few side effects and that getting off of it can also be a struggle. I have been prescribed other types of meds by my doctor but I still am trying not to have to get to use these as I really dont want to start taking some addictive drugs ... I dont want my soon to be 5 year old son to see that daddy is not the same as he used to be (I mean like disconnected and all) ...

I might not be drinking enough fluids and gatorade (for the electrolytes) and I believe that my magnesium levels are in order but I dont think that it would hurt to have too munch magnesium .. maybe I will try and get some more supplements as I used to.

Re: Here I am again ...

PostPosted: April 14th, 2015, 10:36 am
by leaflea

Zoloft (and other related SSRI such as Paxil, Lexapro, Celexa) is NOT addictive, psychologically or physically. Yes, there are some side effects, but they usually go away after a few weeks. Yes, you may withdraw when you stop taking it - but maybe you decide not to stop taking it. That is not the same as addiction. It can be very helpful in breaking the anxiety cycle. I hope CBT can help you. I hope you found a really good therapist. Also find a good book or two. Much of this work can be done on your own. You must put as much effort into your recovery as you do into strength testing, reading about diseases we don't have etc. Do pull your wife in, as she can be on your team and learn new and helpful ways to be supportive and also gain a better understanding of this dreadful disorder.

I can speak for myself that I am here much less than I used to be for two reasons. 1. I was told and can see why it is detrimental to mental health. It is like a big echo chamber sometimes to shout out fears or to see your fears come back to you by many others. Reassurance seeking is much more harmful and addictive than any SSRI medication. I don't see you as doing that as much as some or even myself in the beginning, but just something to think about. 2. I am feeling better. I really don't know why and try not to overanalyze. I used to cramp daily with this but now haven't had a cramp in weeks. I used to twitch hundreds of times a day, now I don't count or notice if I am. There is hope!

I started taking Wellbutrin a few months ago. I believe it has helped. I was very leary of starting this as it is actually one drug that can interfere with sleep and increase anxiety! Good grief, that is the last thing I needed. But, it has some other benefits I found appealing such as treating adult ADHD, SAD (I live in MN where the winters are long and dark), and a few others. It has a low risk of weight gain. It starts working faster than the SSRIs. Thankfully, my fears about this medication have not materialized!

We tend to pay too much attention to some things we read and are told and not enough to others. Our bias is to believe things that align with our fears and discard things that don't. I would worry more about you if I hadn't read what your wrote several weeks later (I have not read your whole history or story so I apologize). Your most recent post says your neuro indicated this is a psychosomatic problem best treated with medication and/or counseling. How we often dismiss those words! And focus on the "99%" sure part which is never good enough for us. My neuro told me he could tell me with 100% certainty I would never have ALS in my life. At the time, I totally lost respect and distrusted him too because I know he is not God and has no business making any claim like that. So, they have a hard time winning with us, don't they?

Wish you well and full recovery!!

Re: Here I am again ...

PostPosted: April 14th, 2015, 10:55 am
by Ghayes420
^^^ very well said Leanne. And glad to hear your sx are subsiding some. I personally can't wait for that day. :)