All about Guillain-Barré syndrome: Jayne has post-GBS symptoms of fatigue, weakness etc...

I first started to get that feeling on Sunday 3rd July 2005. I knew all was not well with my health but couldn’t put my finger on it. By the Tuesday I felt like I was dying. High temp, sore throat and could barely lift my head off the pillow. My GP diagnosed flu and an ear infection. The ear infection I could believe, but flu in July ?

Over the next week, my ear got better but, the “ flu “ symptoms, while getting a little better, seemed to hang on. Exactly a week after these onset of symptoms, I still had no energy and a horrendous pain in my quite right “ feeling on buttocks was worrying me. Nevertheless, I put the feelings of lifelessness down to the after effects of the virus I’d had. That very same day after laying down on the sofa for a sleep, I got up and my left leg gave out underneath me. My husband took me out in the car and after a journey of only a few miles, when I tried to get out of car, my right leg also gave out. But, I struggled on still under the impression that I was just weak after not eating very much over the past week. I bought vitamin tablets and was eating bananas like they were going out of fashion to try and boost my energy levels.

The next morning, still with almost no muscle strength in my legs, I noticed my left arm had gone very weak and within hours my right arm felt the same and I now had pins and needles in both hands and I had suddenly lost all co-ordination. I couldn’t even pour water from the kettle into the pot. My brain seemed to know where the water had to go but my hands wouldn’t do it and, my brain also knew where my legs had to go but, my legs were taking me the opposite way.

I struggled on for another week, still thinking that if I went to a Doctor, he would just tell me what I thought, that it was the after effects of a virus. During this time, the pain in my buttocks got so bad, I couldn’t even sit down and my arms hurt so much, I couldn’t even turn on my side to sleep.

It was exactly two weeks after the virus that I sat up in bed and had the strangest feeling across my chest. Not a definite pain, but a tightness and I couldn’t catch my breath. It was then that I knew for definite that something was very wrong and I was driven to the Doctors surgery almost certain he was going to tell me I had glandular fever.

I almost had to crawl into the surgery and thought I was dying, I didn’t even have the strength to get up on the couch for the Doctor to examine me. But, even before he looked at me, I think he already knew from my explanation of symptoms what was wrong. I had no muscle tone in any of my limbs and no reflexes anywhere.

It was then that he told me that he was 99.9 % certain that I had guillian barre syndrome and he rang the hospital there and then. I didn’t even have time to pack.

They were waiting for me at accident and emergency and it was only when I saw the attention I was getting that I knew how ill I must have been. By this time the pain was getting worse but, the pain seemed to be in all my larger muscles, ie, thighs, buttocks and across the back of my shoulders. My feet, when they drew back the blanket had dropped and were in the strangest position and I could almost feel nothing in my legs, arms and hands. All I could explain to the Doctor was, from the neck up I felt fine ! My brain knew what I wanted to do, but my body just wouldn’t comply with what the brain was telling it to do.

I was admitted the very same day, put on an ECG monitor and got constant attention. By that same night, the pain became unbearable across the back of my shoulders so much so, I couldn’t even lay down in the bed to try and get some sleep so, I had to try and sleep as best as I could sitting up.

During this time I was still able to walk but, my legs could barely hold my body weight and a walk of about 12ft to the bathroom, while holding on to everything and anything was like climbing a mountain. The only way I can describe the feeling on walking was that I was walking on a childrens bouncy castle. Being stubborn, I refused offers of a bed pan. As long as I could use my legs, I was going to walk and no one was going to stop me !

300mgs of Gabapentin 3 times a day gradually eased the pins and needles but the pain continued, although, pain killers eased it a little.

The lumber puncture, I was dreading, after I had heard horror stories of how painful it was. But apart from the local anaesthetic going in under my skin, I never felt a thing. My arms were more sore and bruised from continual visits from dracular to take blood.

Next came the electromyogram and out of all the tests I had done, I have to say that this was the most unpleasant and found it a little more than “ just discomfort “.

After they were satisfied that I wasn’t going to be left alone at home and the physios were happy that I could climb stairs in a safe way, I was discharged 2 weeks later on the 3rd of August.

Four months after, I’m still very weak and feel like I’ve had the stuffing knocked out of me. My legs still take me in the opposite direction to where I want to go and still can’t do a simple task like hold a pen to even write my name properly. Some days are worse than others and I very often feel like I have gone right back to the beginning. The horrendous pain has ceased but, I have a continual aching in my legs and arms and across the back of my shoulders.

Leaving the house alone is not even an option at the moment so, I have to rely on friends and family to take me anywhere but, there are days when I’m not well enough to even get up off the sofa. Every journey out of the house has to be planned around weather the places I’ m going have toilets on the same level and café’s where I can sit and rest at regular intervals but, even journeys like that have to be decided on a daily basis as long term planning is most definitely out as I don’t know how I’m going to be feeling from day to day.

Basically, I feel that this illness has robbed me of my independence and although I know I am lucky that I didn’t end up on a ventilator, I don’t feel very lucky.

Jayne
Nov 2005