tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
The experts and the different websites that we read will all tell us that the malfunctioning motor neurons and subsequent muscle wasting is not painful. And while technically this is true it is also misleading. As in my experience ALS is very painful.
Physically -
We go through excruciating muscle cramps in every imaginable part of the body. This morning I was awoken by my left forearm cramping so bad that it caused my fingers to curl and lock. While this is not the motor neurons dying or the muscles wasting away, it is caused by ALS. What little muscles I have left in my arm have to do extra work to just function during the day. That, with the work that the fasciculations constantly put on them, cause them to fatigue and cramp. The worst for me is when my neck and jaw cramp and lock up.
We go through extreme headaches. These headaches are most likely caused by CO2 building up in our blood as we sleep. This is caused by our breathing muscles not properly expelling carbon dioxide. Again it is not the motor neurons acting out or the muscles dying, but it is a direct result of these things happening that causes our diaphragm to no longer function, causing us to not properly remove the CO2 from our body, leading to incredible head aches.
We go through joint and complimentary muscle pain. As certain muscles die, it puts additional strain on our joints and other muscles. Last week the muscle on the top of my left foot was in extreme pain. This was caused by the other muscles around my foot weakening and being dead, putting more strain on the small muscle at the top of my foot. A muscle not meant to do the work that it now has to do. Again this is not pain from motor neurons dying, or muscles dying, but it is caused by those things happening leaving our bodies in a weakened state.
We go through coughing and joking fits. I do not know why our bodies secrete so much phlegm but they do. It is in some way a direct effect of this monster. It is painful in the cramps, the headaches, and the soar throats that it causes. Motor neuron or muscles dying may or may not be the cause but either way it is painful.
Mentally -
I cannot even begin to explore this. The anguish our minds go through and that of our loved ones is more sever than any pain that can be imagined. We waste away a little more each day and can do nothing to slow it or stop it. It is truly out of our control.
Conclusion -
There are of course Medications, the Bipap, Venting, Feeding Tubes and other things that can help manage all these pains. These are all viable options and good for some. For some of us though, we choose to live with the pain. For me the mental clarity is worth the pain. I also choose to "fight" this disease by letting it take its course. I will, by Gods Grace and Mercy, try to serve my family with any form of energy that I can muster. I will not let ALS take away my love for them by making me mean and bitter. The pain will not negatively effect who I am. I cannot stop ALS, but I can define who I am and what my actions will be. It is all that I have.
Physically -
We go through excruciating muscle cramps in every imaginable part of the body. This morning I was awoken by my left forearm cramping so bad that it caused my fingers to curl and lock. While this is not the motor neurons dying or the muscles wasting away, it is caused by ALS. What little muscles I have left in my arm have to do extra work to just function during the day. That, with the work that the fasciculations constantly put on them, cause them to fatigue and cramp. The worst for me is when my neck and jaw cramp and lock up.
We go through extreme headaches. These headaches are most likely caused by CO2 building up in our blood as we sleep. This is caused by our breathing muscles not properly expelling carbon dioxide. Again it is not the motor neurons acting out or the muscles dying, but it is a direct result of these things happening that causes our diaphragm to no longer function, causing us to not properly remove the CO2 from our body, leading to incredible head aches.
We go through joint and complimentary muscle pain. As certain muscles die, it puts additional strain on our joints and other muscles. Last week the muscle on the top of my left foot was in extreme pain. This was caused by the other muscles around my foot weakening and being dead, putting more strain on the small muscle at the top of my foot. A muscle not meant to do the work that it now has to do. Again this is not pain from motor neurons dying, or muscles dying, but it is caused by those things happening leaving our bodies in a weakened state.
We go through coughing and joking fits. I do not know why our bodies secrete so much phlegm but they do. It is in some way a direct effect of this monster. It is painful in the cramps, the headaches, and the soar throats that it causes. Motor neuron or muscles dying may or may not be the cause but either way it is painful.
Mentally -
I cannot even begin to explore this. The anguish our minds go through and that of our loved ones is more sever than any pain that can be imagined. We waste away a little more each day and can do nothing to slow it or stop it. It is truly out of our control.
Conclusion -
There are of course Medications, the Bipap, Venting, Feeding Tubes and other things that can help manage all these pains. These are all viable options and good for some. For some of us though, we choose to live with the pain. For me the mental clarity is worth the pain. I also choose to "fight" this disease by letting it take its course. I will, by Gods Grace and Mercy, try to serve my family with any form of energy that I can muster. I will not let ALS take away my love for them by making me mean and bitter. The pain will not negatively effect who I am. I cannot stop ALS, but I can define who I am and what my actions will be. It is all that I have.
