My Case of GBS

General General GBS Discussion
1

Good morning all. This is my first time on this group and I would like to give you my experiences so far in an overall synopsis.

I was taken into hospital on the 15th Jan 2015 (after my GP finally decided that there was something seriously wrong with me plus having a fall at home on the same day).

I believe my condition started when my right forearm (for a couple of weeks before admission) started to tingle a little and there was a little numbness only with my thumb. I thought this was due to sleeping funny in bed. I then started to feel some weakness in my shoulders, arms and hands, in particular gripping items.

About a week later the calf of my legs started to feel as is they were suffering from cramp, first my left leg then the following day my right. I could walk, pigeon steps at least. As a note I am right handed and right footed.

The doctors did say it was normal for the legs to 'go first then the shoulders/arms' and not in my way of shoulders then legs.

About a week into being in hospital and after numerous tests, blood, CAT Scan, MRI, ECG, lumbar puncture (fluid removal) blood respiratory etc. they said that I had GBS. I would like to add that I could breathe quite normally.

I was given immunoglobulin for 5 days as well as vitamin pills and laid in bed for about a week.

After about 10 days of being in the hospital I saw a physio where they gave me some basic exercises. One I did on my own was seeing if I could stand up from off the bed, in which I was able to do with the bed at its highest point.

I discussed this with my physio and asked for a walking frame. Each day I got out of bed and began walking with the frame. I did this each day and was able to walk longer distances. I was told I could be doing more damage than good, but how else are you to build up your muscles and strength other than exercise?

After about a week of this, I was able to walk with a stick and take bigger steps. Keeping your balance is critical.

On the 2nd & 3rd Feb in discussion with the physio I undertook walking up the stairs holding onto the handhold and downstairs with my stick. A big struggle but achievable. On the 3rd Feb I was allowed to go home.

At home, I would say that I am getter a little stronger each day, getting use to doing things around the house, but my grip seems to be the only area not responding. I've been told, time will sort this out.

I have arranged to go to the gym next week for basic exercises to help in my recovery.

Seeing a video on youtube has given me inspiration. Morten Wieghorst, recovery from Guillain-Barré syndrome. I'm missing playing golf.

I will say that any exercise you can do, even lifting up and down a can of baked beans will help you in the long term and where possible move around.

I will let you know on any improvements I notice after going to the gym and what exercises are helping.

Les

2

Welcome, Les, I am glad you are on the mend. You have a great attitude, and I trust that your continued efforts will pay off. Here's hoping you are back on the green soon.

3

Great I really hope my mum has the strength to come through this iMessage like you have . It is 1 week now since my mum was admitted to hospital then diagnosed 4 days ago .

4

Dancermom/Donna, thank you for your kind replies.

Donna, the nurses were brilliant at Basildon Hospital, Essex, UK where I was admitted. They were so helpful and caring.

If the nurses are as good at your mums hospital, the time spent there will not seem as bad.

Please give my best to your mum for a speedy recovery.

5

Godspeed with your recovery, it sounds you are doing great! I, too, have a goal to return to the links. It’s been a year since onset, and I think I’ll be able to at least practice the short game soon. Best of luck!

6

Tommy, I hope you get to practice very soon, links is great golf, where do you play?

7

It really does sound like you're doing great!! And I had the same attitude as you......if they said to walk the hallway once a day, I'd try to do it 10 times.

And I don't want to be a downer, but you DO need to be careful!! I pushed myself way too hard after I got out of the hospital and had a relapse. Your body really does need rest and its such a hard thing to accept.

For example, playing a 4-5 hour round of golf (even in a cart) is a BAD IDEA!!! Go to the driving range and hit a small bucket of balls!!! Be ready for NEXT season!!

8

I am definitely taking it easy and not running before I can walk. A bit of exercise, then a rest.

I would like to say that if anybody can get to a gym/leisure complex etc. please do and try to get into the swimming pool, even for 10 minutes, as it allows so much movement of your body, good exercise and without the fear of falling over.

I feel so much better for it, but please do not over do it.

9

I'm new to the boards as well, took one week for the strange tingling in my legs and feet to turn into paralysis where I couldn't lift my legs and fell twice while just standing. The falls were the same day I went to the emergency room - before then I just assumed it was a pinched nerve or something. After two days in Intensive Care, eight days in hospital, and five days in subacute rehabilitation I was allowed to go home.

I've always been really active and I just can't fully wrap my mind around my limitations. I am getting stronger every day, and will be starting physical therapy this week. It's just hard. I never realized how much information was sent to my brain from the bottom of my feet. Now that they are numb, and have been for weeks - and I'm told could be for months - I have such a hard time getting around in unfamiliar settings.

At home, I know what my floors feel like, but on Sunday I was at a mall with a friend, trying to be normal. I was walking around, very slowly - and so appreciative of the many seating areas in a mall. I had never noticed them before because I never needed them - but there are plenty of places to sit for a little rest!

The thing that really caught me off guard is that I had to go to another floor in the mall, and I know steps are hard. So I figured - no big deal, I will just use the escalator. And once I got to the escalator I had a minor anxiety attack. It was way too ambitious to think that I could step on to a moving surface and keep my balance. My brain kept saying "just do it" and my body would not move. It was so hard to explain so I just kept saying "I can't! I can't! I can't!" People behind me gave me dirty looks and assumed I was just some wimp who was scared of escalators... It just really threw me for a loop.

My eyes will look at situations and they look so simple. I'm just not totally used to understanding that I can't do things that seemed so basic before. I'm not used to my body failing me.

10

I know exactly how you feel. Things that were once easy are now hard. Those people who gave you dirty looks are jerks. Did you have a really severe case of gbs, or was it kind of mild. Mine was somewhere in the middle. I couldn’t lift my legs either they felt so heavy, it was really upsetting. Good luck and get better soon.



BrokenBear said:

I’m new to the boards as well, took one week for the strange tingling in my legs and feet to turn into paralysis where I couldn’t lift my legs and fell twice while just standing. The falls were the same day I went to the emergency room - before then I just assumed it was a pinched nerve or something. After two days in Intensive Care, eight days in hospital, and five days in subacute rehabilitation I was allowed to go home.

I’ve always been really active and I just can’t fully wrap my mind around my limitations. I am getting stronger every day, and will be starting physical therapy this week. It’s just hard. I never realized how much information was sent to my brain from the bottom of my feet. Now that they are numb, and have been for weeks - and I’m told could be for months - I have such a hard time getting around in unfamiliar settings.

At home, I know what my floors feel like, but on Sunday I was at a mall with a friend, trying to be normal. I was walking around, very slowly - and so appreciative of the many seating areas in a mall. I had never noticed them before because I never needed them - but there are plenty of places to sit for a little rest!

The thing that really caught me off guard is that I had to go to another floor in the mall, and I know steps are hard. So I figured - no big deal, I will just use the escalator. And once I got to the escalator I had a minor anxiety attack. It was way too ambitious to think that I could step on to a moving surface and keep my balance. My brain kept saying “just do it” and my body would not move. It was so hard to explain so I just kept saying “I can’t! I can’t! I can’t!” People behind me gave me dirty looks and assumed I was just some wimp who was scared of escalators… It just really threw me for a loop.

My eyes will look at situations and they look so simple. I’m just not totally used to understanding that I can’t do things that seemed so basic before. I’m not used to my body failing me.

11

This whole experience has increased my capacity to empathize to whole new levels. And I realize now how often I probably made assumptions about people who had limited issues. You see someone struggling with something and your brain snaps to an idea on what's causing it. For the people in the mall, it was an a-to-b assumption - she is panicking at the escalator, she must be scared of escalators. More than ever I realize that you NEVER know what someone else is going through, and to always give people the benefit of the doubt.

I am very lucky in that my case was relatively mild. The severe paralysis stopped at my waist, though my lungs and heart were affected, leading to a couple of blood pressure related black outs, but I never had to be intubated. My arms and hands were numb, but I was still able to use them. My handwriting and fork technique became sloppy, but I could still move them.

It is so hard to explain the experience of not being able to move your legs... the most frustrating thing I was asked by a doctor was "well how did you know you couldn't move your legs?" But more than not being able to move them, I didn't realize how the heaviness would become such an anchor. I'd be laying in that hospital bed and the weight of my legs would pull me down. And I didn't have the arm strength to adjust myself in bed. I kept telling the nurses my back hurt, so they would give me pain medicine... but it wasn't until my boyfriend was with me in the hospital that I told him my back hurt and he noticed my butt wasn't in the right spot on the bed, so raising the head of the bed was putting a dreadful bend in my spine. He lifted me up and positioned me right and it was instant relief. That's the thing about this kind of illness, you can't just figure out how to articulate what you feel, you have to really think about what is causing it in order to find real solutions.

The most devastating part of the numbness is that skin doesn't feel like skin to me. Not my own, or anyone else's. So if I touch one of my kids, their little faces don't feel like they used to. I have to remember that to them, I still feel the same - and so I have to intellectually remind myself what my affection feels like to them... and try to get past the fact that it doesn't feel the same to me. My dog's fur doesn't feel the same, my boyfriend's beard... it's like there's an invisible electric fence covering all of my skin, so even hugs don't feel the same. Idk.. it's tough.

12

Evening all, been reading comments and I will say its a bombshell when you get GBS. One thing I have been doing is going to the gym (and pool). It helps me a lot and it will build your muscles up, have patience.
Im walking without an aid (frame or stick) but please keep something with you when you go out. I go to the gym and take my stick, mainly for going up/down stairs.
I have learnt alcohol has an affect and should only be taken in moderation.
Any readers of this from England?
All readers from the USA, check out William Perry (the fridge).
My best wishes to you all.

13

Hi Les! I'm glad you're recovering quickly. Try these easy exercises at home. I'm doing them with my son. Get one of those stress balls or even a balloon filled with four. Squeeze 50 times with each hand 3 times a day. For your feet, get an elastic exercise band and hold the ends in your hands, stretch with your feet and point your feet, 15 on each side. Then try pushing it sideways. Have someone hold it in different positions so you can pull your feet towards you, in an upwards direction. Finally also to the inside, towards your arch. 15 reps for each movement, 3 times a day. I was folds its not good to over exercises less repetitions spread out during the day is better. And try swimming, my son is swimming 3 to 4 times a week for 30 minutes. Even before getting diagnosed with GBS, at his weakest point, he could swim and he felt great doing it. It helps you stretch muscles, strengthen them, and relax. I got him into swimming lessons for little kids making sure he could stand if he couldn't swim, and there is an instructor right by him. 4 kids per class maximum.

Hang in there and be patient.

Samarho

14

To all members, what I have found has helped me, going to the gym (don't over do it) and taking high strength vitamin B12 tablets. I feel a lot stronger on my feet and less 'wobble on them'.

Samarho said:

Hi Les! I'm glad you're recovering quickly. Try these easy exercises at home. I'm doing them with my son. Get one of those stress balls or even a balloon filled with four. Squeeze 50 times with each hand 3 times a day. For your feet, get an elastic exercise band and hold the ends in your hands, stretch with your feet and point your feet, 15 on each side. Then try pushing it sideways. Have someone hold it in different positions so you can pull your feet towards you, in an upwards direction. Finally also to the inside, towards your arch. 15 reps for each movement, 3 times a day. I was folds its not good to over exercises less repetitions spread out during the day is better. And try swimming, my son is swimming 3 to 4 times a week for 30 minutes. Even before getting diagnosed with GBS, at his weakest point, he could swim and he felt great doing it. It helps you stretch muscles, strengthen them, and relax. I got him into swimming lessons for little kids making sure he could stand if he couldn't swim, and there is an instructor right by him. 4 kids per class maximum.

Hang in there and be patient.

Samarho