I spent 45 days in hospitals including inpatient rehab and got IVIG and had plasmaphoresis as treatment for GBS. I've been out of the hospital system for a month today and am on Lyrica and Oxycodone / Oxycontin among other things. The Lyrica didn't kick in until a week after discharge.
I've seen my numbness start to recede and my body start to improve in outpatient therapy. I'm confused though as I'm seeing some mixed signs even as I see regression of the numbness. I'm seeing more oddness on my hands, some numbness on my face and some on my abdomen even as the numbness receeded mostly down to the top of the legs.
We're looking to get in to the neurologist sooner for our follow up due to this, but I wanted to see if anyone has had similar experiences in recovery with progress in some aspects but also some setbacks.
Progress with setbacks seems to be very common with this condition. If you were to plot most recoveries it would definitely not be a straight line going upwards. The trick is to not get too alarmed. Also further in to this you start to look more at the "big picture" (ie. you are overall getting better). Hope you feel better soon!
As Mark says, everyone's experience is different, but yours is not unusual. You are still in the early stages of recovery, so be patient and do the exercises your PT gave you. Nerve damage takes a really long time to heal, so again, be patient.
I can't recall anyone who has had GBS not having any setbacks. i sure had plenty. There were times when I thought what's the use in trying so hard if I am only going to relapse. However, I had very good support from family, friends, and physical, occupational, and speech therapists who encouraged me onward. It WILL get better Batman. If you don't have close family and friends I guarantee you have everyone on this forum pulling for you. We have all been there. Keep moving forward no matter what obstacles get in your way. You WILL get better! You stop in anytime you have questions or concerned. We are all on your team.
Hi I'm new iv been out of hospital for 6 months now. Gbs has left me with number of problems, most recent iv started crying in my sleep. Iv just woke myself up crying tthats why I'm on so late.I do feel so alone. U feel like people patronising me when I tell them my concerns look forward to your comments.
Hi Batman! I still have setbacks but overall progress. It gets pretty hard to take after so long. I'm so fortunate and appreciative but tired of all of the sick reminders. I just wanted to see how Lyrica has worked for you. They are thinking about putting me on it for all of the nerve activity. Gabapentin made me so dizzy! Hope you are doing better!
We did get in to see the neurologist and he assured me that my issues with additional numbness weren't quite cause for alarm yet. We've been watching the face and hands to see how things go and, thankfully, the cheeks are less numb in the weeks since, but my nose is still annoyingly numb. I'm noticing little improvements bit by bit, but I wasn't quite prepared for how slow it is or how little I can do to get back to my former self. The Bat-wife and I had a nice cry earlier, but yeah, it's hard. It's not the hard times that got me - it's been the repeating monotony of the days and the way things start to blend together. Things are improving, but it just takes a lot of time.
Tarhealing said:
Hi Batman! I still have setbacks but overall progress. It gets pretty hard to take after so long. I'm so fortunate and appreciative but tired of all of the sick reminders. I just wanted to see how Lyrica has worked for you. They are thinking about putting me on it for all of the nerve activity. Gabapentin made me so dizzy! Hope you are doing better!