I’m having a really hard time for the past 3 days, especially last night and today. It feels like it’s on overdrive. Did anyone go through this? Any suggestions? Please help
Hi: I am not sure how long you have had G B S but I have had it since October 16, 2014. The first few weeks were pretty bad with balance, tingling, numbness and the feeling as if my legs were wrapped, with trouble moving them. Now the sensations are subsiding each day but appear more defined certain times during the day. I had the flu vaccine and it was determined through an EMG that I have G B S. It does seem to get better each day though.
I was diagnosed on October 29, 2014. My symptoms started about a little over a week before I was diagnosed. It started with my toes and moved up to my arms, tongue, lips legs, difficulty swallowing and while at the hospital, the left side of my face drooped. But that went away about 4 days after. I was in the hospital for a week and in acute therapy a week and 2 days. I’m able to walk unassisted at my own pace but the pain and tingling is so bad, it’s on my left side of my face, hands and feet. I still have trouble swallowing at times and My anxiety is bad.
I was similar to you, dx sept 5, 4 days in the hospital. The tingling/ pins and needles got worst before subsiding. Today I still have a fuzzy feeling in my hands and lots of little muscle twitching when I try to go to sleep. Stay strong, it will get better
Thanks for replying, today is a better day, thank God.
jaco167 said:
I was similar to you, dx sept 5, 4 days in the hospital. The tingling/ pins and needles got worst before subsiding. Today I still have a fuzzy feeling in my hands and lots of little muscle twitching when I try to go to sleep. Stay strong, it will get better
My GBS symptoms started the middle of June of this year about 2 weeks after receiving a Tetanus vaccine. It started in my toe and moved up my leg with tingling, numbness, and lots of muscle twitching too followed by muscle weakness. It moved up my back and affected my speech, hearing, eyes, and chewing. This caused me so much anxiety at the time. It's been over 5 months now and I no longer have the numbness, tingling, weakness, or facial symptoms. I just have some minor twitching but it's hardly noticeable just at night. Time has really helped me along with massage and good physical therapy. Good luck and give yourself time to heal!
sometimes my left side of face twitches but not that bad. Prayer is really getting me through
The left side of my face used to twitch too. After I started recovering,whenever I would overdo it the twitching would increase temporarily in the areas where it bothered me most in the beginning but never as bad as it was initially. Prayer helped me too. You sound so much like I was. I know things will turn around and you'll be looking back on it too.
Amen, I can’t wai to feel normal again
It seems like it takes forever to get there but you will feel normal again. I'm not completely back to where I was before this happened but I'm pretty close. I'm still working at it too! It gets better.
What meds were you on and did it wotk for you? At the hospital, they had me on a few and one gave me horrid nightmares, I don’t remember the name though. I told them that I was not ever going to drink it again. They gave me gavapentine, then after that something that starts with a T, now I’m on Duloxetine, 20 grams before bed. I will stop drinking that too because it’s not working on me and I don’t want to be dependent on pills
I was on very few meds. I really just toughed it out most of the time. I was on an ant-inflammatory (Meloxicam 15 mg) daily and a muscle relaxant (Tizanidine 2 mg) as needed and Lexapro 5 mg daily to help with stress. I never went on anything for nerve pain. I came close to taking Neurontin for the burning pain but did not want the side effects. I suffered a lot and no medications really helped me. The anti-inflammatory may have helped a little once I was back at work and standing all day. I had a lot of pain at first in my back because I had no endurance. I used a cold wrap during the day and learned some exercises to help stretch out and strengthen my back. When I started recovering, I got lots of burning pain in my legs and back. Early PT was good for me but I learned that it needs to be someone familiar with GBS because it's a different approach than aggressive physical therapy. Massage helped too. It was a while before I was able to sleep. I was out of work for 5 weeks. That's about the time I started PT- twice a week. It was the best thing that happened for me. I'm down to PT once a week and will probably be able to stop early December.
I am not taking any meds. Just dealing with everything. I do get message and acupuncture once a week.
How’s accupun working for you?
jaco167 said:
I am not taking any meds. Just dealing with everything. I do get message and acupuncture once a week.
I think it has helped a lot.
Ho
how did it affect your eyes?
Tarhealing said:
My GBS symptoms started the middle of June of this year about 2 weeks after receiving a Tetanus vaccine. It started in my toe and moved up my leg with tingling, numbness, and lots of muscle twitching too followed by muscle weakness. It moved up my back and affected my speech, hearing, eyes, and chewing. This caused me so much anxiety at the time. It’s been over 5 months now and I no longer have the numbness, tingling, weakness, or facial symptoms. I just have some minor twitching but it’s hardly noticeable just at night. Time has really helped me along with massage and good physical therapy. Good luck and give yourself time to heal!
Hi Ivy!
I had trouble turning my eyes and had a lot of pressure in my face. Then I began having blurred vision and some double vision and was unable to drive for several weeks because I just could not see well enough to drive. They checked my optic nerve which was fine and did an MRI of my optic nerve and it was fine too. It wasn't my sight but seemed to be the nerves affecting my facial muscles.I was so excited when it finally got better and I could see and drive again. Hope you had a Happy Thanksgiving. How are you doing?
Ivy said:
Ho
how did it affect your eyes? Tarhealing said:My GBS symptoms started the middle of June of this year about 2 weeks after receiving a Tetanus vaccine. It started in my toe and moved up my leg with tingling, numbness, and lots of muscle twitching too followed by muscle weakness. It moved up my back and affected my speech, hearing, eyes, and chewing. This caused me so much anxiety at the time. It's been over 5 months now and I no longer have the numbness, tingling, weakness, or facial symptoms. I just have some minor twitching but it's hardly noticeable just at night. Time has really helped me along with massage and good physical therapy. Good luck and give yourself time to heal!
Some days I’m better than others but my tingling and numbing on my hands and feet hurts so bad in the morning and at night. My anxiety is so much better now and so is my swallowing issues. My thanksgiving was so nice, how was yours and how are you feeling?
Tarhealing said:
Hi Ivy!
I had trouble turning my eyes and had a lot of pressure in my face. Then I began having blurred vision and some double vision and was unable to drive for several weeks because I just could not see well enough to drive. They checked my optic nerve which was fine and did an MRI of my optic nerve and it was fine too. It wasn’t my sight but seemed to be the nerves affecting my facial muscles.I was so excited when it finally got better and I could see and drive again. Hope you had a Happy Thanksgiving. How are you doing?
Ivy said:Ho
how did it affect your eyes? Tarhealing said:My GBS symptoms started the middle of June of this year about 2 weeks after receiving a Tetanus vaccine. It started in my toe and moved up my leg with tingling, numbness, and lots of muscle twitching too followed by muscle weakness. It moved up my back and affected my speech, hearing, eyes, and chewing. This caused me so much anxiety at the time. It’s been over 5 months now and I no longer have the numbness, tingling, weakness, or facial symptoms. I just have some minor twitching but it’s hardly noticeable just at night. Time has really helped me along with massage and good physical therapy. Good luck and give yourself time to heal!
I had a great Thanksgiving! I ran my first race since this started for me in June. It was probably a little soon but I just had to. It was my thing before all this happened. I still have muscle twitching in my legs and fatigue especially after lots of standing, walking, or running but everything is so much better. I get tingling and sporadic pain in my hands but it's very random. My hands were not as affected, mainly the strength but that's better now. I do have to drop my dog's leash from time to time when we are running because my hands have trouble. I ran a race with my dog on Thanksgiving morning and tried to run without gloves so I could hold the leash better. It was pretty cold out and my leash hand got so tired and numb and tingly. I was able to get the glove back on that hand at least. It's just weird that things affect my hands more than before but they do pretty good now and at least they recover. I'm so glad you are doing better! I bet you will keep improving faster now!
Ivy said:
Some days I'm better than others but my tingling and numbing on my hands and feet hurts so bad in the morning and at night. My anxiety is so much better now and so is my swallowing issues. My thanksgiving was so nice, how was yours and how are you feeling?
Tarhealing said:Hi Ivy!
I had trouble turning my eyes and had a lot of pressure in my face. Then I began having blurred vision and some double vision and was unable to drive for several weeks because I just could not see well enough to drive. They checked my optic nerve which was fine and did an MRI of my optic nerve and it was fine too. It wasn't my sight but seemed to be the nerves affecting my facial muscles.I was so excited when it finally got better and I could see and drive again. Hope you had a Happy Thanksgiving. How are you doing?
Ivy said:Ho
how did it affect your eyes? Tarhealing said:My GBS symptoms started the middle of June of this year about 2 weeks after receiving a Tetanus vaccine. It started in my toe and moved up my leg with tingling, numbness, and lots of muscle twitching too followed by muscle weakness. It moved up my back and affected my speech, hearing, eyes, and chewing. This caused me so much anxiety at the time. It's been over 5 months now and I no longer have the numbness, tingling, weakness, or facial symptoms. I just have some minor twitching but it's hardly noticeable just at night. Time has really helped me along with massage and good physical therapy. Good luck and give yourself time to heal!
I can’t wai to get back to the gym! What I notice now is when I do exercise or I clean my home, the next day I’m exhausted and my legs hurt a lot. I lost a lot of muscle on my legs 
Tarhealing said:
I had a great Thanksgiving! I ran my first race since this started for me in June. It was probably a little soon but I just had to. It was my thing before all this happened. I still have muscle twitching in my legs and fatigue especially after lots of standing, walking, or running but everything is so much better. I get tingling and sporadic pain in my hands but it’s very random. My hands were not as affected, mainly the strength but that’s better now. I do have to drop my dog’s leash from time to time when we are running because my hands have trouble. I ran a race with my dog on Thanksgiving morning and tried to run without gloves so I could hold the leash better. It was pretty cold out and my leash hand got so tired and numb and tingly. I was able to get the glove back on that hand at least. It’s just weird that things affect my hands more than before but they do pretty good now and at least they recover. I’m so glad you are doing better! I bet you will keep improving faster now!
Ivy said:Some days I’m better than others but my tingling and numbing on my hands and feet hurts so bad in the morning and at night. My anxiety is so much better now and so is my swallowing issues. My thanksgiving was so nice, how was yours and how are you feeling?
Tarhealing said:Hi Ivy!
I had trouble turning my eyes and had a lot of pressure in my face. Then I began having blurred vision and some double vision and was unable to drive for several weeks because I just could not see well enough to drive. They checked my optic nerve which was fine and did an MRI of my optic nerve and it was fine too. It wasn’t my sight but seemed to be the nerves affecting my facial muscles.I was so excited when it finally got better and I could see and drive again. Hope you had a Happy Thanksgiving. How are you doing?
Ivy said:Ho
how did it affect your eyes? Tarhealing said:My GBS symptoms started the middle of June of this year about 2 weeks after receiving a Tetanus vaccine. It started in my toe and moved up my leg with tingling, numbness, and lots of muscle twitching too followed by muscle weakness. It moved up my back and affected my speech, hearing, eyes, and chewing. This caused me so much anxiety at the time. It’s been over 5 months now and I no longer have the numbness, tingling, weakness, or facial symptoms. I just have some minor twitching but it’s hardly noticeable just at night. Time has really helped me along with massage and good physical therapy. Good luck and give yourself time to heal!