Are lulls in recovery normal? I'm 3.5 months in so I don't have a large portion of time to examine. My symptoms were slowly, consistenty resolving up to a point a month ago when I got my double vision resolved. But after that nothing has changed. Have periods of recovery followed by extended periods of stagnation been anyone's experience?
I am only about 5 weeks in. My first symptoms where are numbness and tingling. Even got the right side of my face. Then two weeks went by and things seemed to be getting better. Then yesterday it hit me again. This time I got all the first symptoms plus leg weakness. Today feels better thank God! I am hoping I am done! Only time will tell from here.
I thought I was done. Almost completely recovered after 8 months. Then after a sinus infection a month ago, I suffered a flare up. Not as bad but definitely discouraging. About 5 weeks into this, so not sure how long this will last. Autonomic symptoms are the worst this time. Hope I've hit the bottom of it so I can work on recovery once again. Still able to walk and drive though so that's encouraging. Waiting it out!
I’m 13 months since diagnosis, and yes, there can be lulls. I’ve had a few, but try to work through them. For me anyway, the are farther apart, and I’m optimistic. Stay tough!
Yes! Many many people report setbacks and plateaus. I'm 2.5 yrs in and can do a lot including work full time, drive, etc. But even now I have setbacks. It has, over time, gotten so that the time between setbacks gets longer and the duration of the setbacks is shorter, but it is just a very slow healing process. Remember that GBS can also stand for Getting Better Slowly.
Best wishes - Elaine
That's what's happening to my friend -- she got her voice and head/eye movements back two months ago and then, very little improvement since. And, she'd been basically in a coma since September -- so it's very, very slow. But she also has MFS so they are assuming it'll be quite a while before we see marked improvement. Sadly. But, as her husband said today-- at least she WILL improve, maybe not as fast as we want, but she will improve.
Today is my 20th day since being released and my legs are so heavy and I am so easily fatigued. I was terrified that it was coming back, so it's a great relief to hear that it seems pretty common that some days are just harder than the day before. To this point its been slow, but noticeable incremental progress, so to have a day where it felt like I took two steps back was terrifying. Thank you all so much for your feedback.
My rheumatologist told me that recovery would be like a bouncing ball-sometimes the ball would bounce higher after it bounces lower but eventually keep dropping as it continues to bounce until it finally stops. That has been my experience. I sure do hate when it bounces high though!
Tarhealing said:
My rheumatologist told me that recovery would be like a bouncing ball-sometimes the ball would bounce higher after it bounces lower but eventually keep dropping as it continues to bounce until it finally stops. That has been my experience. I sure do hate when it bounces high though!
Thanks for all the replies! So it sounds like there's still some room for hope. This is a very bizzare experience. Prior to this, the only ailments I experienced were broken bones, colds, flu, normal infections. Things that you slowly but steadily, and quickly, recover from. But with this the scope is so massive over time. When I first started this trip the mere thought of "2-6 weeks to *start* recovery" (from the internet) was inconceivable. Now if I knew that this lull was just gonna be another 4-6 weeks I'd think "awesome! Can't wait!"
Things are turning around for me once again, thank goodness! Symptoms are backing off and I am getting my strength back. I still fatigue out pretty hard when I over do things but that time seems to keep stretching out later in the day. I never experienced anything like this before June 2014 and I really hated revisiting these symptoms again. I am hopeful to put this behind me again! At least it wasn't as bad and didn't last as long. Now I feel I can focus on regaining my strength once again! Definitely a "bizarre experience!"
Thought I'd update a bit on my situation. This "lull" has continued on until now. A month after my post and still no further improvements. I asked my neuro-ophthalmologist about lulls like this and he said typically when you plateau like this then this is kinda where you end up (although he did leave room open for "very very slow further recovery). Which is discouraging. The weird thing about this is that the only symptoms I have left are ones that popped up when I went on Prednisone (action tremors and twitching, skin sensitivity/irritation) and that was a rough ride, so now I'm wondering if this isn't something Prednisone caused. I know it's tough to say, but reading online, and the stories around here, everyone seems to have at least slow improvement, or variation at least. But I got MFS in Novemeber and then plateau only 3 months in?