Hello - I am glad to have found a group who will understand my concerns! I’ve been googling GBS so much recently. I’ve been out of hospital for nearly a week now so 3 weeks after diagnosis. Originally misdiagnosed as Bells Palsy since only one side was affected but that changed over 48 hours as the other side also froze. My legs are also affected - I can walk but feel very wobbly, can’t do stairs etc.
But one side of my face is now returning slowly. Which is great but, per my physio I am still grade 0 on the other side. I can’t eat or drink properly and certainly not in company. I can’t speak properly - bit of a problem in a job where I’m in meetings most of the day. Physio said today that it may never return and if there’s nothing after 8 weeks then she expects it to stay this way. Does anyone have any experience with facial paralysis with GBS?
I’m on Lyrica for pain, also sleeping tablets. But I’m so anxious I hardly dare sleep in case something changes.
Thanks for any info!
I had a lot of facial trouble in my case but most of it got better. Early physical therapy seemed to help. Have you tried any physical therapy yet? It made me anxious too. The loss of speech terrified me. I didn't know where it would go from there. Everything fortunately got better but it was a slow process with ups and downs. It took awhile but I kept working at it. I had light facial massage too which seemed to help. Everyone's case is so different but the possibility of good recovery is encouraging. Don't give up!
Hello Tarhealing - thank you for your reply!
I’m glad you’ve had a successful outcome. Yes it is terrifying and anxiety probably doesn’t help the healing process! I am doing physio and actually it was the physio who gave me such a poor prognosis. But I’m living in Hong Kong and the Chinese can be very blunt. They’ve suggested I try acupuncture so going for that later today. I’m actually scared of needles which isn’t ideal. But been referred now to another physio specialising in the face. So I think I’m doing all I can.
Did you have total paralysis? Thanks for your encouraging words!
This is a condition I would not wish on anybody. Frightening, fast and debilitating.
Anyhow I wish you a full and speedy recovery and thanks again,
Best Regards, Vicky
I experienced total facial paralysis. Loss of both feeling and movement. The feeling came back much more quickly than the movement. As I regained use it was not equal or symmetrical. With more than 100 muscles in the face, PT is tough. I never regained full movement of every muscle. I cannot move my eyebrows or forehead. Squinting is really tough. I cannot hold my lips together tightly enough to whistle or hold my breath under water. My appearance was permanently changed. Plus side, very few wrinkles as I have aged. ;-)
While I was told that whatever feeling hadn't returned after 6 months probably would not return, I was told that physical recovery could continue after that. And I did continue to experience improvement for a couple of years, but it took time and hard work.
I know it's hard not to be anxious and fearful, but don't let it figuratively paralyze you as well. Any prognosis at this point is speculative. You can definitely affect the ultimate outcome. Recovery can and will continue to happen. Be strong and don't let anyone tell you can't or won't. Can and will is your future! Be strong and well!
Hi Charlotte,
Thank you so much for your honest account of your experience and also for your words of encouragement. I’m sorry to hear that your appearance is still not back to pre-GBS but it seems that you have managed to make a lot of progress, which gives me hope.
Sorry to hear that you also lost feeling. Most of my sensory feeling is still intact (tongue is numb and some days my lips feel numb). So yes mine is really the movement issues. Currently literally nothing on the left.
You mentioned it’s taken a lot of hard work. Were there any particular therapies/approaches you found helpful (or a waste of time) may I ask? Did you do a lot of massage/exercise by yourself?
I did acupuncture for the first time yesterday. I have had a lot of nerve pain today so not sure if that was a trigger. If I do find it beneficial over time I’ll let you know. I have another session tomorrow. Getting brave!
Thank you in particular for the last paragraph of your answer. I’m taking a lot of positives from you and hope to rise above this horrible thing and offer support to others as well:)
All the best to you,
Vicky
VickyI
I was told that it had been easier to rehab my larger muscle groups (I was paralyzed from head to toe) because the therapist could pick up an arm or leg and move it while I concentrated on trying to perform that action. That retrained my brain to recognize the signals it was receiving. With the facial muscles being so small and numerous, that was a much more difficult task.
They tried electrical stimulation therapy, little electrodes plugged in to my face. It was very painful and didn't work. If that therapy is still around I would NOT recommend it.
It may sound crazy, but what was actually the most effective was looking in a mirror. I would sit in front of the mirror and make faces at myself. As I tried to make the face, I would use my hands to try and put my face in that position. I also used a straw, trying to hold it in my lips, balance it on my upper lip, etc.
The facial rehab was pretty much on my own. I was actively exercising those muscles daily for about 18 months. During the first 12 to 14 months I saw the most difference. After that things slowed way down. My family continued to notice subtle differences over the next several years.
I am really the only one that notices the differences in my appearance. I met my husband after GBS, so he and my children have only seen " before" pictures. And the only difficulty I notice now is that when I get tried it is more difficult to annunciate words when I speak, I sound a little slurred.
Back in the day, people would sometimes ask what was wrong with my face. Now with people doing Botox and stuff people just assume that's what I have done. Not that I like that, but I don't get as many questions now. But overall, I can honestly say that most days I don't even think about my face, what moves and what doesn't. I can still smile and I try to as often as I can. Life is good! Be well!
Hello Vicky,
How are you doing?
I was diagnosed with GBS in 2012. I started with pins and needles and numbness in hands and feet until I had no feeling and was unable to move anything. One side of my face dropped as if i had suffered a stroke. I couldn’t speak, walk or move and had 3 weeks in hospital. I went through Immunoglobulin treatment, rehab etc and was at 90% when I was then struck down with CIDP in 2014 and now live with pain daily. Because I didn’t loose the function in my legs I wasn’t given Immunoglobulin. I am Lyrica for restless legs and also pain. My face has recovered however one side still lags behind, especially if i am tired. I have terrible face pain very sore temples. I squint the minute I walk outside, so have invested is a good pair of sunglasses. I have had BOTOX in my forehead to help, but someday my body aches like I’ve run a marathon. Im having a bad day today. My hands are so sore, Im using 2 fingers to type.
Im so sad that so many of us live with this disease, and can only hope they continue research to help us.
Stay positive XX
I did not have complete paralysis of my face so that may be why my recovery has been pretty good. I do have problems with the one side lagging too when I am tired, especially when I first wake up in the morning after having done a lot the previous day. I have to wear sunglasses all of the time now. My vision will be worse too after I have overdone things or gotten too hot. I even get vertigo sometimes when I am dehydrated and overdone things. My PT said that my eyes aren’t tracking correctly for the image and that is the reason for the dizziness and vertigo. The few times this has happened since the original occurrence has been corrected with PT but I still notice deficits most days to some extent. I hope I keep recovering but I think I will never be the same. Sometimes I wonder if I have CIDP or relapsing-remitting GBS or if I am just still recovering. It’s hard for me to know and I don’t really have any medical support. I’m just winging at this point on my own and with PT when I need it. Wish I had a good, supportive Neurologist in my life.
Hello Gardibunch
Thank you for your reply. I’m sorry to hear you’ve been so unwell for so long. Indeed let’s hope that our disease does get more interest and research. I still get a numb foot and nearly 6 months in I still have wasted muscles and can’t exercise as I used to. It’s interesting you say that you got your face back… how long did that take? I have some recovery now but the facial nerve is so complex… I now have synkinesis and very uneven movement. Plus in the last 2 weeks a lot of ear and hearing discomfort that seems to fill my whole head and neck. I have to avoid noise and ask people to tone their voices down. You say you have bad face pain, has that only happened during recovery? I think I’ll start a thread to ask if others have hearing problems. Oh the joys!
Well I wish you a continued recovery and relief from the pain.
All the best
Vicky xxx