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Living with Polyneuropathy CIDP, GBS, & CMT

My face got paralyzed / anybody have this happened


#1

I got diagnosed with GBS on May 12,2015. still recovering was paralyzed from head to toe. I'm about 90% back to myself. My face is still not moving fully. My toes are still numb & tingling have a little trouble with balance. My face is the most troubling still can't smile.

Anyone had to deal with this?

thanks

ilene


#2

Hi ilene,i to got diagnosed with guille barre on the 5th may, it also affected me from head to toe,but only on one side of my face. I use a face pulsator,like a tiny tens machine on my face every day. It is improving i can smile with my mouth closed but not a toothy smile. I stil cant blow my cheeks out or pucker my lips. Nobody is sure if it will ever be the same as before. im getting alot of twitching in my face also im hoping this is my muscles getting better.

Good luck with your continued recovery


#3



Tink said:

Hi ilene,i to got diagnosed with guille barre on the 5th may, it also affected me from head to toe,but only on one side of my face. I use a face pulsator,like a tiny tens machine on my face every day. It is improving i can smile with my mouth closed but not a toothy smile. I stil cant blow my cheeks out or pucker my lips. Nobody is sure if it will ever be the same as before. im getting alot of twitching in my face also im hoping this is my muscles getting better.

Good luck with your continued recovery


#4

Hi Tink im having trouble replying to you.


#5

Hi Tink, Thanks so much for getting back to me. Its the first I've heard about anyone else who had there face effected too.

Im also not able to smile fully, pucker, and blow out my cheeks. What is a face pulsator? The only thing i was told to do for my face were stretches. they also said i have synkinesis. Are you able to walk? The twitching is a good think, every time i had a twitch the area would start moving. I hope you keep on improving.

hope to hear back from again.

ilene


#6

Hi Ilene, it’s a facial stimulator it just works the muscles in your face. They also use them for Bell’s palsy. It’s worth asking your consultant or a physiotherapist about one. I hired one out. Yes I’m able to walk,took me a while to feel confident again. Can’t run yet though. Also get very tired easily and feel sick a lot at bedtime. Still get slight tingles and numbness in legs when tired. Had to give up work as I was completely exhausted when I got home and I lost a lot of confidence with my face. Hopefully one day everything will be back to normal. Good luck with your recovery. Happy Christmas. Tink


#7

i had trouble with my face too along with my legs. It's been a year and a half for me and my face did heal. I had balance issues because it affected the nerves in my face and inner ear. Physical therapy helped me overcome the trouble I was having with dizziness and balance, as well as the strength in my core and legs. I can run again now. My sight got better but I can tell it will never be completely the same. I still get twitching in my face from time to time but it is nowhere near what it was, used to drive me crazy but I think it was nerves trying to work. They did heal with time though so there is hope.


#8


Thanks so much for your response, its good to hear that your face got better. So there is hope. Its been 8 months out and the bottom half of my face is very stiff can't pucker, blow out my checks or smile. my eyelids close now & I'm walking 5 miles a day so i feel very luck . The twitching i think is a good thing, the area on my face would than start improving after the twitching. My Drs also told me when the nerves are healing it is very painfully. How paralyzed was your face and how long did it take to get back to normal?


Tarhealing said:

i had trouble with my face too along with my legs. It's been a year and a half for me and my face did heal. I had balance issues because it affected the nerves in my face and inner ear. Physical therapy helped me overcome the trouble I was having with dizziness and balance, as well as the strength in my core and legs. I can run again now. My sight got better but I can tell it will never be completely the same. I still get twitching in my face from time to time but it is nowhere near what it was, used to drive me crazy but I think it was nerves trying to work. They did heal with time though so there is hope.


#9

That's great that you are walking 5 miles! Initially, after a Tetanus shot, I had this terrible pain behind my eye, my eye felt like it was having trouble turning and it felt like my face was getting kind of numb and not feeling right when I would move my face. I saw an eye dr. and he said my eye was fine that it must be my sinuses. So, I went to an ENT and he scoped my sinuses and they were fine. I thought it was weird but just tried to ignore it. Then I started getting this ascending numbness weakness that traveled up my leg, my spine then my cranial nerves. The face and eye got worse during this time. Lots of twitching, pain, numbness. My vision got blurry because I felt like my eyes weren't turning right and I felt like it was more difficult to smile but people said that they couldn't tell. I could though. I started having trouble with my hearing, sight, chewing, and speaking at my lowest point. Thankfully, that didn't last long. I did notice that I could not whistle for awhile. The muscles just didn't want to work right for me and they would just get so tired. It's funny because I never wore glasses before and I got some during that time. Now I don't need them and can't see at all with them. I didn't know that my eyes would get better but once the nerves healed then everything got better. I do need reading glasses now for small print but I'm fine with that and that could be my age but I do think this all helped that along. Oh, and I can whistle great now. I remember the day I could because I kept trying like it was a turning point. I never could decide which was worse for me the face thing or the leg thing. Both were just as bad. I had a lot of pain for a short time. It's amazing that the body can heal from something like this. I never would have believed it at the time though just days, hours, weeks of struggling to regain my life again. I do believe that you have to accept that things may be different but keep striving to heal. Hope you find lots of healing in the new year! It's nice to finally have times when I am not constantly reminded that I have suffered from GBS but get to choose when I remember it. I still feel like I am healing and I'm a year and a half out. It's just really subtle now. Meditate1, have you had much pain?


#10

My GBS started in my face and it and my toes are probably where I having lingering effects. I couldn’t close my eyes, move my lips, jaw, eyebrows, and I lost my sense of taste. My face is pretty good (other people don’t notice anything) but I still had some minor issues (it’s been 1.5 years). I had facial physio after the hospital which helped strengthen muscles. I just recently started having acupuncture to see if I could get rid of the remaining issues, and it’s making a huge difference. The guy I’m seeing was highly recommended because he has a lot of success with MS and bell’s palsy patients. If your face took a lot of damage, it may be a longer process, but it can get better if you keep massaging, stretching and exercising it. The acupuncture has helped with muscle pain and unevenness.


#11

Hi Kimberly my GBS started in my leg than in 5 days it hit my face. I started drooling when i drank.The Drs than were able to diagnose me within 5 days of pain in leg. Had to go to ER 3x before they admitted me. It got worst in the next few weeks, where i couldn't walk and i had to be feed. The P/T's were fantastic i was at the The Rusk in NYC.I walked out of there in 7 weeks. i was very determined. 8 months later my toes are also still a little numb, tingling and balance is off. Im still on pain meds 100mg of lyrica & 20mg 2x a day of cymbalta, much less than when i was in the hospital. I had the same problem with my face as you did they had to tape my eyes shut at nite in the hospital now i can shut my eyes. I still can't smile completely.( i have a 1/4 of a smile) face is still numb. Im doing stretches and i see a p/t for my face. What kind of exercises are you doing for your face? Your situations sounds very similar to mine. Thanks so much for responding. ilene


#12

My to warm my face before physio on it. This could be by doing some cardio to get blood flowing to the face, or using a hot wash cloth. One warm, I would do a facial massage. After that I’d go through facial stretches that mainly focused on my mouth and cheeks. I’d do a c grip with my thumb on the inside and pointer finger on the outside and pull outward and hold for a minute. I’d repeat positioned near my top gums and then again near my bottom gums. Then I’d work on stretching the area above my lip. Same sort of grip, pulling middle down, then right side to the bottom left, and left side to the bottom right. Then repeat pulling each side to the opposite side. Same thing with the bottom lip, but pulling up. Is practice blowing up my cheeks just to the point I could without my lips leaking and hold for 30 seconds, three times. I’d practice moving each side of my mouth independently to smile, go straight to the side, and frown. Then is do the same moving them together. I’d practice blinking. I had developed an eye roll, so I looked down while I blinked and focused on not moving my gaze. As I improved I’d do the same thing moving my gaze up and recording my eyes so I’d know if they were rolling. I’m sure there was probably more, but those are the ones I remember the best. I now am mostly dealing with muscle pain, stiffness and a bit of unevenness. I started acupuncture for that a couple weeks ago, and I’ve seen a big difference. I wish I’d done it earlier. I had acupuncture to help with my other aches and pains during recovery, but never thought to ask about my face. I took a lot of supplements during my recovery, and tried to get off medication (very gradually) as soon as I thought I could handle it. Keep working, be patient, and good luck!


#13

Hi Kimberly,

Thanks you so much for the good advice.

ilene


Kimberly said:

My to warm my face before physio on it. This could be by doing some cardio to get blood flowing to the face, or using a hot wash cloth. One warm, I would do a facial massage. After that I'd go through facial stretches that mainly focused on my mouth and cheeks. I'd do a c grip with my thumb on the inside and pointer finger on the outside and pull outward and hold for a minute. I'd repeat positioned near my top gums and then again near my bottom gums. Then I'd work on stretching the area above my lip. Same sort of grip, pulling middle down, then right side to the bottom left, and left side to the bottom right. Then repeat pulling each side to the opposite side. Same thing with the bottom lip, but pulling up. Is practice blowing up my cheeks just to the point I could without my lips leaking and hold for 30 seconds, three times. I'd practice moving each side of my mouth independently to smile, go straight to the side, and frown. Then is do the same moving them together. I'd practice blinking. I had developed an eye roll, so I looked down while I blinked and focused on not moving my gaze. As I improved I'd do the same thing moving my gaze up and recording my eyes so I'd know if they were rolling. I'm sure there was probably more, but those are the ones I remember the best. I now am mostly dealing with muscle pain, stiffness and a bit of unevenness. I started acupuncture for that a couple weeks ago, and I've seen a big difference. I wish I'd done it earlier. I had acupuncture to help with my other aches and pains during recovery, but never thought to ask about my face. I took a lot of supplements during my recovery, and tried to get off medication (very gradually) as soon as I thought I could handle it. Keep working, be patient, and good luck!

#14

I experienced complete facial paralysis along with my other symptoms. My entire face dropped, like you see in stroke victims, I could not even blink, they had to tape my eyelids shut at night. Use of a facial stimulator helped me regain about 80% usage. I can't move my eyebrows at all. I can only partially pucker, and I can't suck out of a straw or whistle. Total plus side, I am not really getting many wrinkles as I age. And now people just assume I've had Botox instead of asking what's "wrong with my face"


#15

Im eight months out and still can't smile , only closed lip smile. can't whistle or pucker also. How long ago did you get GBS? I also had my eye lips taped shut at nite. Im able to close my eyes now. I have a little movement in my farhead. People just think a had a lot of work done. Still have some tingling in my feet and numbness. Still on Lyrica and cymbalta for pain but much less then when i was in the hospital. The doctors told me there is a 2 year recovery . so still hoping that all will be back to normal and i can smile again.


#16

I was diagnosed in 1982. Two years is a good estimate for the majority of my improvement and recovery. I still have tingling, small spots of numbness and some pain. I've learned to live with these symptoms, there were not prescription options for pain management back then. But I can, and do, smile all the time! The more you try, the better it gets! When I look at pictures of me before GBS, I know i do not look the same, but that's okay. Life with GBS will give you a new "normal", but it is still a great life!


#17

I remember the day I could whistle again. Seems insignificant but it was awesome! It was a measurable sign of recovery for me. I'm 20 months out now and barely notice my past facial troubles. I have pushed to recover and still do because I believe more recovery may be out there for me but at the same time I have accepted the new normals for myself. Good news is that those new normals have changed for me with continued recovery. I have had to let go of what was though along the way and keep it more positive by looking to how far I've come.


#18

What a great outlook! Anyone recovering from the onset of GBS knows how hard you battle for every milestone. Keep fighting, and whistling!


#19

Have you ever checked out “Bell’s Palsy” on Web MD, you may find some answers there. Gary


#20

Hello Ilene
I’m sorry to hear that you’ve had such a nasty time with GBS. I’m nearly 9 months in and sounds similar to your experience. I had temporary effects in my legs and one arm but the residual is mainly one half of my face though initially both sides were totally paralysed. Yep I have synkinesis too (devastating as I really thought once the nerve started to recover I’d be ok). I’m on cymbalta but no longer need the lyrica. My hearing is very acute and that is probably the worst thing. I had a lot of electric stimulation in Hong Kong but when I went home to London I met professionals in this field who are believe this is not a good approach. With the synkinesis I have a twice daily massage and stretching regime. It’s tiresome but I never skip it. There are videos for this on the internet. For months I sought information on GBS recovery but now I identify more with Bells Palsy and there are support groups for that as well. Lots of sufferers have synkinesis and other residuals. It’s very distressing. I’m still embarrassed to eat in public but I find it easier if I explain to people what happened and then I relax a bit more. Anyhow like others I also found acupuncture helpful. Not sure if any of this helps on a practical level but definitely you are not alone on this. A few months ago I wondered what my future might be but I’ve just returned to work and getting confidence and a bit of my life back:) I hope you are able to do the same.
All good wishes to you and everyone else who replied to your question. There’s a lot of great supportive people on here:)
Vicky