TN-Trigeminal Nerve Pain in Combination with my GBS

I was diagnosed with GBS in Jan 2014. I have had the 5 recommended doses of IVIG. I have done all of my own physical therapy.

I am now using water therapy as a way to straighten out my legs and feet when I walk and have found that this after only two weeks has done more to strengthen my walking than everything else. When I am in the therapy pool (olympic size), I walk in the 3 1/2 deep and jog the 4 1/2 feet on each lap. In the water I can walk and run normal. One of my questions to you all is, "When will my legs and feet not feel numb any more?"

Another question that I have is when will the fatigue stop?

My newest symptom seems to be trigeminal nerve pain in my jaws. This pain is the most severe pain that I have had since this all began! It wakes me up at night, it attacks me after I brush my teeth, when I eat and sometimes even with breathing. Has anyone else developed this a considerable amount of time after contracting GBS? I have found that low dose pain killers help. Is there anything else that you can recommend for the pain?

The numbness in your legs will slowly get better. The tingling will lessen too but not sure if it will go away all together. I came down with GBS in May 2013 and came home from the hospital in July 2013. I too had pool therapy and balancing in the water was difficult since both feet were numb.

When I got home I noticed both legs from my knee to my feet were still numb and tingling. Then slowly it got better. Today, the numbness in both legs have gone away and mild tingling left in both of my feet.

I still get fatigued though. I come home from work and all I want to do is hit the bed. My legs feel really tired. After a few hours of rest, my legs feel better.

I don't have any pain in my jaw maybe that's the reason why I gained back the 38 pounds I lost due to the GBS.


Thank you very much for your feedback. I can't wait until the numbness is gone.

I find that when I am in the water, I can navigate just like I could prior to GBS. I have more balance and can even jog with no trouble.

I unfortunately did not lose any weight but am losing it slowly now and strengthening up my legs. Muscle memory is amazing! On land, I must use a cane because my balance hasn't come back.

Are you able to drive? Can you get off the floor? I can't work yet either. GBS gave me high blood pressure, ankle swelling when I sit up too long and now extremely bad nerve pain in my jaw. It is the gift that keeps on giving!

Can you wear shoes yet? I can't and still can only wear flip flops.

Thank you again,


I was totally paralyzed from my neck down 3 weeks into my GBS. I was also put on a ventilator to help me breathe. By the 5 week I was doing PT and OT in a Skilled Nursing Home. I slowly worked my way to sitting up in a wheel chair. First for a half an hour, then couple days later a few hours, and then 1/2 a day. My blood pressure would drop to scary levels in the beginning due to the length of time lying in bed. After intense Physical Therapy to strengthen my legs and core muscle I could only then learn to walk again using a walker that supported my body. Then I graduated to the regular walker, then to a cane.

I was in 3 different type of hospital setting facilities for 3 months. When I got out, I continued to go to Physical and Occupational Therapy. I got stronger and my balance got better. By 7 months into my GBS, I started to drive. I had to make sure my foot was strong enough to push the accelerator and brake pedal and my arms strong enough to turn the steering wheel.

As for shoes, the rehab hospital tied those elastic shoe laces to my shoes so I could slip on my shoes instead of tying them. Once the dexterity in my hands/fingers returned I was able to tie my laces, but I still have the elastic laces on my favorite athletic shoes. Doctor didn't want me wearing flip flops early on due to tripping hazards. My ankles were really weak.

As for getting off the floor, before the rehab hospital released me, I had to prove to them I could get off the floor should I fall. They taught me several methods. I never did fall once I got at home.

Amazingly, from a paralyzed state, I was able to return to work in 9 months. My neurologist was blown away that I returned to work so soon. He told me he thought I would out at least 2 years.

Good luck Cheryl. God Bless.

I would really recommend finding an active release technique practitioner to help with your jaw. I’ve been working with one since leaving the hospital and he has helped with so many of my aches and pains.

Thank you Kimberly for the suggestion of an active release technique practitioner. I just hope that I can find one of those in this small town of Hudson, FL.

Kimberly said:

I would really recommend finding an active release technique practitioner to help with your jaw. I've been working with one since leaving the hospital and he has helped with so many of my aches and pains.

Everyone story is amazing and very encouraging and also gives hope , my mother is hospitalized due to GBS and I am filled with hope at this moment in time.

Thank you