Accepting BFS: My Journey

[MitchellRoom69]

Hello everyone,

Ive been experiencing the whole bunch of "classical" BFS-symptoms for about 4 mths now: generalized fascics, shakings & vribratings, stiffness, exercise intolerance, muscle-aches etc.
After the first - very, very hard - weeks, 3 (!) absolutely clean neuro-examinations with EMG and with the (blessed) help of the members of this community - I found myself accepting my weird symptoms and began to manage it seriously. Ive been getting better and better - physical and mental - with every day. Until yesterday.

Yesterday Ive done some isometric exercises for the extensor-muscles of my fingers esp. for the index fingers of both hands (stretching against resistance and hold it for a few secs). The exercises went well and it showed no strength-differences at all.
But a few hrs later, when I wanted to go to bed, I noticed I almost wasnt able to stretch/extend the index-finger of my right hand. It seemed it had almost no strength and it was only very slowly and with much effort to move it in stretched position. It wasnt possible to extend the finger against a little resistance. Though I noticed I was still able to stretch the index with the other fingers of my left hand while I hold the (extended) arm - the index began to sink down - much weaker than the other fingers of my hand. It was a very scary situation for me - a feeling of losing control of my muscles.
Today, after 9 hrs sleep, I tried it again and it works much better now - the index of my left hand is still feeling a little "stiff" but works much better and seems to have almost full strength! I can use it like thousands of days before!
Weird, but anyway, I guess yall can imagine that Im still very scared of this experience yesterday. A really, clinical weakness yesterday - and one day later it is gone? A weakness that comes and goes? Could it be the beginning of a permanent clinical weakness?

Have anyone of you an idea what could be the reason for this symptom? Or is there anyone who have experience anything similar?

Thank you very much for supporting me and God bless you all,

Bru

 

[garymills]

Bru,

As I understand it, true clinical weakness doesn't wax and wane. What your description sounds like to me is simple fatigue.

Quit all the crazy testing....it only leads to anxiety.

Take care,

Gary

 

[sammy123]

I agree with BillBob, the testing will just lead to more testing, and in the event a test does not go as you think it should, you'll freak out. Been there and done that many times myself. I found once after lifting weights that I could not resist any force with my left pinky finger, none. It was dead. Next day it was fine again. At the time I thought it was the start of something terrible. Now I know I just stressed it. The muscles of the hand are small and they are easily fatigued. Don't drive yourself nuts, life is too short.

 

[bandQueen]

True clinical weakness doesnt come and go. When you loose muscle strength because of als, your muscles die due to signals from the nerves being blocked. Once that has happened there is no good/bad days. The muscles arent restored and due to the nerve tissue dying there is no way its possible to be weak one day and have strenght in same muscle next day.

Once you loose muscle strength in als, it will never return and only gets worse (thats why people call it a progressive disease).

Hope this comforts you somewhat

 

[GinniferLynne]

You could have just fatigued your fingers.

Did you know that you can fatigue your reflexes to the point that you won't get a reflex response anymore? Well, you can do the same with any muscle or any part of your body.

As the CCF forum says: ALS is CONSTANT, clinical weakness.

Ginny

 

[skylar101]

I think what you experienced is a spasm. It is no cause for an alarm.