Would you wait until your follow-up or call your doctor?
Hi everyone! I’m newly diagnosed with RRMS (diagnosed in May) and I’m still trying to learn what’s normal and what isn’t.
I had my first Tysabri infusion about 2½ weeks ago, so I know it’s still early. One thing I’m really struggling with is fatigue when I’m at work. If I’m getting up and down and walking around a lot for even 30 minutes, it’s like I hit a wall.
The best way I can describe it is that it feels like someone strapped 200-pound weights to every part of my body. Even my brain feels heavy, like it takes so much effort just to think. Once it starts, it’s hard to push through, and I feel completely drained.
For those of you on Tysabri (or any DMT), did you experience this? Did it improve over time, or is this something you still deal with?
Would you contact your neurologist now, or would you wait until your scheduled follow-up in November to see if the infusions have had more time to work? I’m trying to figure out what’s worth calling about versus what I should expect as my body adjusts.
I’d really appreciate hearing your experiences. ❤️
It might be worth talking to your neuro, but fatigue is unfortunately very common for most of us. Pushing through is often futile. Have you had any guidance on pacing or spoon theory?
I definitely have heard about both but, at my work we are short staffed and not sure when we might get any help so, I’m have to compensate especially since I’m the team leader 🙄(not by my choice). It’s so hard to pace when you are expected to pick up the slack so, at this point I pretty much have to push through 😩 My neurologist already knows about my fatigue and has put me on provigil to help but I’m still having a hard time functioning through the fatigue.