My appointment yesterday pls read

Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym

Re: My appointment yesterday pls read

Postby chicagobfs on January 12th, 2012, 12:55 pm

I actually still twitch while asleep.. Had sleep study and the oxygen was fine... Not sure what to think about it all but thx crissi I loved your post gave me a lot to think about .
Last edited by chicagobfs on January 12th, 2012, 2:40 pm, edited 1 time in total.
User avatar
chicagobfs
Hero
Hero
 
Posts: 339
Joined: January 28th, 2011, 10:41 pm
Location: USA, IL

Re: My appointment yesterday pls read

Postby Silverbullet on January 12th, 2012, 2:01 pm

I am not sure what to think either. But fingers crossed that there are benefits ahead for you. :roll:
Silverbullet
 

Re: My appointment yesterday pls read

Postby chrissi on January 12th, 2012, 5:46 pm

Oxygen is fine here too. Between 97% and 100%, perfect. But my Co2 is way too low (not measured in sleep studies), and that makes it impossible for the oxygen to be transported the right way to muscles. In pulsoxymetrie (what they use in sleep study) they look at the oxygen in your blood, not muscles. Well, I will see how it all turns out. Right at the moment my leg pain is really bad and my arm is vibrating again. I feel I tense it, hubby can actually feel it vibrating too, but I cannot really release it. If I concentrate a lot, I can loosen it for 10 sec or so, damned, I really have no control over it..
"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
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: My appointment yesterday pls read

Postby Silverbullet on January 12th, 2012, 6:21 pm

I am sorry it is so uncomfortable for you at this moment.... There is one thing that sticks in my mind and that is the intensity to understand. Many things in this life we cannot understand. A pain I know. But in some ways I wonder if just reinforcing this stuff in writing about it kind of makes it a well trodden route. If this does have a psychological caused maybe we are not doing ourselves any favours reinforcing it.

I am not suggesting it being write or wrong. I am just reflecting on your post. I am giving all you have said some consideration and applying what little I know and that is we learn good or bad behaviours by repartition. I use the word behaviours as intentional and none intention learning.

I hope this makes sense. It is late and I am tired! :)
Silverbullet
 

Re: My appointment yesterday pls read

Postby chrissi on January 12th, 2012, 6:47 pm

Missbehavin just showed me a vid with a stretching to loosen the nerves in legs with tensed up muscles and..damned, it helped!!! I yelled in pain doing the stretches, but now I feel tons better. I guess I am tensing up those muscles myself and then i squeeze that nerve.
"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
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: My appointment yesterday pls read

Postby mariaj on January 12th, 2012, 8:42 pm

Spencerryan1 wrote:Do you guys think that muscle twitching can be apart of a somitization disorder?


Absolutely! My mum had ALS and I remember when we first went to see a neurologist he told me that mum was "fasciculating everywhere". I asked him what that was and he said twitching. Well I then obsessed about it and hey presto within 2 weeks of telling me about twitching I then started to twitch! If that isn't somatisation then I don't know what is. Once I got the correct help ie get my thinking in order, I fully recovered. Took 2 years but I got there in the end and have been well for at least 2 and 1/2 years
mariaj
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: January 19th, 2008, 12:33 am
Location: Sydney, Australia

Re: My appointment yesterday pls read

Postby Wells05 on January 12th, 2012, 9:24 pm

Chrissi u are amazing!!! Great post friend :) ash
Wells05
Hero
Hero
 
Posts: 404
Joined: April 9th, 2011, 10:07 pm

Re: My appointment yesterday pls read

Postby chicagobfs on January 13th, 2012, 1:05 pm

Chrissi you doctor suggested that you will get even more pain in the future? This doesn't really match some of us on this forum. In my case like similarly to others the pain decreased with time. I do agree with some points he made( big anteans or somitization disorder etc) but I'm not so sure about early Fibro stage.
User avatar
chicagobfs
Hero
Hero
 
Posts: 339
Joined: January 28th, 2011, 10:41 pm
Location: USA, IL

Re: My appointment yesterday pls read

Postby chrissi on January 13th, 2012, 1:09 pm

No he said right now it is a somatisation disorder which might head into fibro if I don't find a way to calm my body down. But he said it doesn't necessarily lead to fibro.
"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
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: My appointment yesterday pls read

Postby chicagobfs on January 13th, 2012, 1:12 pm

Pk that sounds better :D More optimistic at least...
User avatar
chicagobfs
Hero
Hero
 
Posts: 339
Joined: January 28th, 2011, 10:41 pm
Location: USA, IL

Re: My appointment yesterday pls read

Postby chrissi on January 13th, 2012, 1:27 pm

But he has seen quite a lot of fibro patients that-looking back-started like that, with all that BFS crap.
"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
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: My appointment yesterday pls read

Postby chrissi on August 7th, 2013, 6:34 am

Ok I just found this old thread of mine and thought I could just bump it up , to give newbies a read of one of the possible reasons for BFS. For me, this was it. I did the therapy and was healed. Another twitcher from here did it with very good results this march, but having little relapses in time of stress etc.

The reasons for BFS can be various, but I have a feeling the this applies to a good portion of Twitchers on here.
"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
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: My appointment yesterday pls read

Postby twitchguy on August 8th, 2013, 1:24 pm

Chrssi,

I believe your post nails it quite nicely.
For me, my BFS started in my first year of university at what preceded it was not only anxiety but specifically hyperarousal/hypervigilance.
I think that "filter" notion is quite true because in addition to the BFS, which was novel to me, I also experienced and continue to experience eye floaters
and blue field entoptic phenomena. Normally the brain "filters" this stuff out but as a result of the hyperarousal I became acutely aware of bodily things.

Regarding what precedes BFS, I have to agree with those childhood factors and the ideas behind it. I have a choleric father,I stressed over marks since grade 1, I got bullied/excluded growing up, and I was smart for my age (was tested for giftedness)- I thought about things and paid attention to things too much. Suffice to say I didn't have enough or the correct social outlets and I bottled everything up and developed somatic symptoms which drove me and my doctor up the wall. They eventually went way but not before I developed "cholinergic urticaria" (nervous hives) as a result of stressors which really impacted me in high school.

I hope I do find away to mediate my mind-body connection before I develop some really serious issues (BFS is a warning sign - I agree with you there Chrssi).
My grade 10 math teacher said I would die a young man (if I don't chill).
It will be a challenge surely, as I'm still in university and the work is getting tougher and social pressures are always around.
I hope I can train myself and correct my "filters."

God and nature bless.
twitchguy
Interested
Interested
 
Posts: 16
Joined: October 31st, 2012, 11:35 am

Re: My appointment yesterday pls read

Postby muppetdog on August 9th, 2013, 4:02 pm

Ok, I had to chime in on this one.

I also experienced and continue to experience eye floaters


These are NOT something your brain will filter out. They are masses of coalesced proteins floating around in the fluid in your eye. When they float in front of the visible light shining on your retina they cast a shadow. Tons, and tons, and tons of people have this. Not a big deal, but not something your brain can ignore. They will never go away but later when you're older and the fluid in your eye thins out, they may sink to the bottom and becoming less noticeable. If you all the sudden have a bunch more of them, or a sudden increase, you should see and eye doctor; it could be a sign of detached retina.

blue field entoptic phenomena


Everyone, again, Everyone has this. If you stare at a blue sky long enough you will see tiny light movement - or a white computer screen sometime. Its from the white blood cells in the back of the eye. Everyone has this. Ask anyone, they have it if you show them how to see it. Everyone in my family has it.

Also, ask around a bit, a ton of people will tell you they have floaters.

Floaters are annoying and really hard to miss for anyone; the blue field effect is a bit more nit picky. Not many people pay close enough attention to see that one. I had to figure that one out myself, also.

Here's another fun one, next time you are driving close one eye and then the other and compare the color contrast. The eye that is on the side of the light source (direct sun angle) will seem way more green compared the other. The eye on the opposite side of the light source will appear more red. You can also do this inside with a lamp. If you find this is true you have "normalcy syndrome." ;)

God forbid someone read this and think that if they have floaters or see faint sparkles in the sky, that they have "BSF." :)

MD
User avatar
muppetdog
Selfless giver of time
Selfless giver of time
 
Posts: 224
Joined: March 30th, 2012, 2:53 pm
Location: Colorado

Re: My appointment yesterday pls read

Postby twitchguy on August 9th, 2013, 4:43 pm

You're absolutely right...they are normal.
But you missed the context. I was speaking to Chrssi's filter point with my person experience to illustrate.
I did not have these experiences until my BFS started, all of which was a result of anxiety- specifically a heightened state in which I became cognizant of bodily things.
(That's the same exact time the BFS started.)

Also I've seen a number of eye doctors and they cannot see my floaters with their lamps. But they are there in abundance.
Apparently at my young age of 20- they are not "true floaters."

To quote wikipedia which I resent but:

"Floaters have been reported in patients as young as 3. Floaters in teenage patients and young adults are usually harder to treat. For people in this age group, the floater that is seen usually looks like a kind of translucent worm/web/cell. These particular floaters aren't really floaters in a technical sense as they aren't found in the vitreous humour, instead they are found right on top of the retina in the premacular bursa. Very little is known about this region, and it only becomes distinct after the vitreous detaches from the retina at later stages of life. Due to their microscopic size they cannot be seen by professional doctors. They only appear as big as they do because of their proximity to the retina."

Thanks for your input. Bottom line is I need to chill my nervous system out...somehow.
twitchguy
Interested
Interested
 
Posts: 16
Joined: October 31st, 2012, 11:35 am

Re: My appointment yesterday pls read

Sponsor

Sponsor
 

PreviousNext

Return to Symptom Management

Who is online

Users browsing this forum: Google [Bot] and 5 guests