wendya432
Active member
- Joined
- Jul 10, 2013
- Messages
- 75
- Reason
- Learn about ALS
- Country
- US
- State
- mi
- City
- Davison
Just wondering how you all deal with the daily issues of being uncomfortable all the time? It's not even so much pain, although I do hurt and have days that I am in pain. But every day I am just so uncomfortable. I think it's a combination of the weakness and spasticity. I do take baclofen now, 10mg at night and 5 or 10 during the day if I'm bad. And I'm on tegretol which has helped a bit, too. Although they both make me sleepy. But I just hate that I'm so stiff and sore all the time.
An example.. when I am just up and about doing things around the house, my legs just feel awful. Not like oh my gosh I'm in pain, but just like, wow I need to sit down because I just can't stand up any longer. I do the dishes and have to stop before I"m done because my hands have gotten stiff and can't grasp things well anymore. And they just feel... tired I guess.
So at this point I'll sit down and I still have this aching uncomfortable feeling of my arms and legs just being over tired I suppose.
My neck and shoulders tend to hunch up and forward. I don't realize it until they are aching and I have to try to get them to relax and go into a more natural position. But they are stiff and tired, too.
My ankles hurt from the spasticity in my legs and I'm guessing from the muscle weakness. (It amazes me that I can have this spasticity and still feel so weak)
Then I get this tightening feeling in my rib cage. Almost like the practice contractions you get when you are pregnant. But they don't go away until I take a baclofen and a robaxin.
I guess my question is, is there a better way to deal with this stuff? Or do I just have to get to a point that I accept that this is my life now and I'm not going to feel ok anymore?
I don't want to complain. I know I don't have it so bad. But I hate feeling like this all the time. It just never lets up. And I have a 4 year old at home with me all day that I'm chasing around (he's going to preschool soon).
Also, on a side note. My labs the neuro did last visit all came back normal. Zinc, vitamin E, and copper all are right in the middle of the range. Also tested negative for the fragile X syndrome he had done. I think at this point he's kind of grasping at straws. Next appointment isn't until December and he mentioned maybe doing a muscle biopsy. I'd almost be happy for him to say, I have no idea what's going on, everything else has been ruled out, your UMNs are dying and you're going to be in a steady decline. I think I could just accept it and move on, you know? Oh well.
An example.. when I am just up and about doing things around the house, my legs just feel awful. Not like oh my gosh I'm in pain, but just like, wow I need to sit down because I just can't stand up any longer. I do the dishes and have to stop before I"m done because my hands have gotten stiff and can't grasp things well anymore. And they just feel... tired I guess.
So at this point I'll sit down and I still have this aching uncomfortable feeling of my arms and legs just being over tired I suppose.
My neck and shoulders tend to hunch up and forward. I don't realize it until they are aching and I have to try to get them to relax and go into a more natural position. But they are stiff and tired, too.
My ankles hurt from the spasticity in my legs and I'm guessing from the muscle weakness. (It amazes me that I can have this spasticity and still feel so weak)
Then I get this tightening feeling in my rib cage. Almost like the practice contractions you get when you are pregnant. But they don't go away until I take a baclofen and a robaxin.
I guess my question is, is there a better way to deal with this stuff? Or do I just have to get to a point that I accept that this is my life now and I'm not going to feel ok anymore?
I don't want to complain. I know I don't have it so bad. But I hate feeling like this all the time. It just never lets up. And I have a 4 year old at home with me all day that I'm chasing around (he's going to preschool soon).
Also, on a side note. My labs the neuro did last visit all came back normal. Zinc, vitamin E, and copper all are right in the middle of the range. Also tested negative for the fragile X syndrome he had done. I think at this point he's kind of grasping at straws. Next appointment isn't until December and he mentioned maybe doing a muscle biopsy. I'd almost be happy for him to say, I have no idea what's going on, everything else has been ruled out, your UMNs are dying and you're going to be in a steady decline. I think I could just accept it and move on, you know? Oh well.