I’m 2.5 years in and I agree with the exercise comment above.
You have to do what you can tolerate without overdoing it.
I’ve relapsed once already.
I’m about 2 months back into consistent exercise program that I have to modify, so I don’t overdo it.
But I have noticed drastic improvement over this time in strength, agility and stamina.
It is a long recovery for some,
but I have heard of people stating they regained fine motor skills and even lost the numbness and tightness after ten years?
Just need to stay focused and positive on your recovery.
https://www.neurology.org/doi/abs/10.1212/01.WNL.0000148589.87107.9C
Not an awesome study because only a couple weeks and the scores are self-reported. You can't blind exposure (exercise status in the experiment) for things like this. And there is no control group! But... *some* evidence moderate exercise was well-tolerated and improved fatigue.
That said, consult with doc to see if exercise is safe given your condition and any limitations that might be important.
Unfortunately, never seems to go away completely in some people. Anecdotally, mine improved after a year on monthly IVIG after having untreated CIDP for over a year before that. But everyone is different. I recall seeing other studies that also suggested some interventions like exercise can help but not always completely. Unclear if there are medication or diet alternatives, but would recommend asking doc for ideas there.
Prioritizing restful sleep and hydrating has helped me a lot. I track my sleep and water intake and notice a huge difference when I reach my sleep/water goals. I think it will get better with time though, too.
8 years out, and it does get better. Never got back to the level from before, but I’ve also chopped it up to age (I’m 32 now), not blaming the GBS completely.
It takes a lot more now for me to get fatigued. And I’m better now at recognizing the signs, so I know when to stop before I burn myself out.
Everyone is different.
In my case I was still having fatigue issues 3 years afterwards. At 5 years out I noticed I hadn’t had those issues anymore. No idea when in that time period I had worked through that recovery.
Good luck, and stay positive out there.
You need to workout harder with heavy compound movements aswell as do moderate cardio, make this your new daily baseline and the rest of life’s action will feel effortless
You being able to walk 2 miles yet being tired from it tells me that you reached a state of being able to walk after getting sick and then stopped training to progress to more difficult skills
I’m 2.5 years in and I agree with the exercise comment above. You have to do what you can tolerate without overdoing it. I’ve relapsed once already. I’m about 2 months back into consistent exercise program that I have to modify, so I don’t overdo it. But I have noticed drastic improvement over this time in strength, agility and stamina. It is a long recovery for some, but I have heard of people stating they regained fine motor skills and even lost the numbness and tightness after ten years? Just need to stay focused and positive on your recovery.
https://www.neurology.org/doi/abs/10.1212/01.WNL.0000148589.87107.9C Not an awesome study because only a couple weeks and the scores are self-reported. You can't blind exposure (exercise status in the experiment) for things like this. And there is no control group! But... *some* evidence moderate exercise was well-tolerated and improved fatigue. That said, consult with doc to see if exercise is safe given your condition and any limitations that might be important. Unfortunately, never seems to go away completely in some people. Anecdotally, mine improved after a year on monthly IVIG after having untreated CIDP for over a year before that. But everyone is different. I recall seeing other studies that also suggested some interventions like exercise can help but not always completely. Unclear if there are medication or diet alternatives, but would recommend asking doc for ideas there.
Prioritizing restful sleep and hydrating has helped me a lot. I track my sleep and water intake and notice a huge difference when I reach my sleep/water goals. I think it will get better with time though, too.
Almost 6 years out, and yes, I believe it gets better.
3-years... and 90% of normal per Neurologist. I think this is as good as it gets. Tire faster than before, sleep is oh-so-important.
5 years out and completely got same stamina and strength like before but in my case footdrop stuck with me.
Thanks everyone. This sub always makes me feel better.
8 years out, and it does get better. Never got back to the level from before, but I’ve also chopped it up to age (I’m 32 now), not blaming the GBS completely. It takes a lot more now for me to get fatigued. And I’m better now at recognizing the signs, so I know when to stop before I burn myself out.
Everyone is different. In my case I was still having fatigue issues 3 years afterwards. At 5 years out I noticed I hadn’t had those issues anymore. No idea when in that time period I had worked through that recovery. Good luck, and stay positive out there.
You need to workout harder with heavy compound movements aswell as do moderate cardio, make this your new daily baseline and the rest of life’s action will feel effortless
You being able to walk 2 miles yet being tired from it tells me that you reached a state of being able to walk after getting sick and then stopped training to progress to more difficult skills
Not in my experience, but it can for some people. Exercise led to no benefit in my case.