My experience with Mild Guillain-Barre Syndrome – Adrian Connock Age 59

I was diagnosed with mild GBS in November 2020. The GAIN charity was extremely helpful in providing information and aiding my overall understanding of what was happening to me, but it was quite difficult to find anything which related specifically to the mild form of the condition. I decided that, once I was largely through it, I would share my experience which would hopefully help others in a similar position.

I should firstly define what mild GBS meant to me and cover the diagnosis. Following a routine chest infection, I developed the typical nerve damage which very fortunately only progressed as far as my lower arms and legs; hence it was described by the hospital neurologist as “mild”. I was not given the specific GBS test as it was thought this would do more harm than good. My diagnosis was arrived at via a thorough examination and elimination of all the other possibilities. My blood tests were clear and I had no underlying health condition, with a good level of physical fitness as a cyclist and gym goer.

Clearly, I was extremely fortunate not to develop all-body GBS. There is no explanation as to why my nerve damage stopped in my lower limbs. By the time I was properly diagnosed the main GBS episode had peaked and I was left with the resulting damage. Had I known this was GBS at the onset it would have been incredibly frightening.

I was extremely impressed with the approach of the diagnosing neurologist at my local NHS hospital. However, I was told I would make a full recovery within weeks –unfortunately this was not the case. I went through several months of anxiety fearing I was not making the expected progress, before being assured later I was doing OK and symptoms would probably continue for up to 2 years.

Although “mild” in comparison to full GBS, the discomfort severely affected my life for several months and I only resumed normal exercise at around 5 months. I had recently retired, but estimated I would have been off work for more than 2 months, and then a rehabilitation period would have followed (office work).

My initial symptoms were tingling in my hands, general weakness, numbness in hands and feet and loss of balance. I was very carefully monitored by my local GP in the early stages, who suspected GBS.

During the development phase I had severe pain all over my body, particularly in my back and neck and did not sleep at all for two weeks. I progressed to the strongest painkillers to try to get some relief. Darkness was much worse than daylight hours, when I felt there was some respite, and this continued to be the case throughout. I remember dreading the sun going down and still get this feeling in the darker months.

As the back pain resided after around 3 weeks, I was left with extremely painful pins and needles, particularly in my lower legs which felt as if on fire, accompanied with numbness. I had the same feelings in my hands but somehow this seemed easier to cope with. I was now getting 2-4 hours broken sleep with the help of the painkillers and there was very heavy fatigue.

I was determined not to lose too much muscle strength and after a month or so I got myself out for a 20 minute slow walk most days and I even washed the car. Ever increasing burning sensations in my feet and lower legs as I walked prevented any more, and invariably I would return home to sleep after any activity. I recorded at the time that any further exercise did not feel manageable or beneficial. I was still very numb in the lower limbs and it was like walking on stilts! I also recorded that I could not climb a small step ladder for fear of losing balance. I tried an exercise bike but intense pins and needles put a stop to this.

At around 2 months I was starting to sleep more normally and this was of great benefit to my general fatigue and well-being. I was now able to walk slowly for an hour before the pain stopped me abruptly and I started some modest strength exercises, albeit this proved a little too soon.

At 3 months, without any tangible progress and the restricting nature of my general discomfort, particularly in my feet, I was facing a mental battle and becoming impatient and worried. In truth recovery was barely perceptible day to day, but it did help to keep a diary and compare with a few weeks previous when recovery could become more evident. I visited a private neurologist who advised me that I was indeed making excellent progress and that symptoms would likely persist for 2 years.

I was still taking the strong painkillers at night but was advised to try medication more suited to blocking nerve pain. The neurologist also explained how my damaged nerves were affecting me by sending the wrong messages to my brain, and this really helped me cope with future discomfort. I also found it reassuring that, as I had no other underlying health conditions likely to delay my recovery, I should continue to progress.

At 4/5 months I was able to resume cycling which was a big milestone for me. It felt something like pushing my feet onto a bed of nails at first, but if you are a cyclist, you will know that it is possible to make your upper legs ache more than anything else, which I did! At 8 months I was due to take part in a 100-mile event, but this would have a been a step too far and I postponed for a year.

As I write now it is 15 months since my episode of mild GBS. On reflection, the intervening period was one of slow but steady progress. By around 9 months I was able to say that my condition did not stop me doing anything I wanted. I will be doing my 100-mile cycling event in 4 months. Mild symptoms persist - some numbness and low-level pins and needles in the feet – but I am able to say there are long periods of the day when I do not notice it. I still take medication to remain comfortable in the evenings, although I do hope to wean myself off this in the next few months. I have the warmer months ahead now, which seem to help matters, and I remain optimistic that I will feel more or less normal at around 2 years from the onset.

As I write now it is 15 months since my episode of mild GBS. On reflection, the intervening period was one of slow but steady progress. By around 9 months I was able to say that my condition did not stop me doing anything I wanted. I will be doing my 100-mile cycling event in 4 months. Mild symptoms persist - some numbness and low-level pins and needles in the feet – but I am able to say there are long periods of the day when I do not notice it. I still take medication to remain comfortable in the evenings, although I do hope to wean myself off this in the next few months. I have the warmer months ahead now, which seem to help matters, and I remain optimistic that I will feel more or less normal at around 2 years from the onset.

I guess all cases will be different, as will the severity of GBS and in relation to any other health conditions. That said, I hope this gives you an insight into a lesser form of GBS and what it might mean.

My tips for getting through it are as follows:

Staying informed and receiving appropriate and timely medical consultation is as important to your mental state as it is to your physical health. I got over anxious as a result of a lack of understanding and unrealistic expectations as to my rate of recovery.

Any medication you are prescribed should help, may not be instant, and hopefully it won’t be long term. I hate taking pills and have tried to stop too early on several occasions.

Stay as active as your body feels is right, but don’t rush it as too much seems to set you back. Gentle short walks was all I could manage for a long time. When I resumed strength exercises, I could not manage more than 2 press ups, but over the course of a year I have been able to gradually regain my previous levels of strength and fitness. I cannot say for sure if exercise aids recovery based on my experience, but I would like to think it does, and at the very least will improve your confidence and well-being.

I tried to eat as well as possible as I felt this should aid recovery, as does good sleep. Whilst often tempting, I found that even small amounts of alcohol madesymptoms worse for me and the neurologist confirmed this was the case. office@gaincharity.org.uk or call 01529 469910

A minor tip, but having shoes you can slip off easily can make sitting in a pub or restaurant more bearable when your feet start to hurt! I experimented with various types of shoe/footbed – soft is not necessarily good. The best I found was the Birkenstock traditional cork which is fairly firm but anatomically designed. Thick socks or high pile materials were not comfortable for me.

Maintain a weekly diary of how you feel, sleep patterns, progress with exercise etc. There will be times when you will feel very despondent about how this is holding your life back, particularly if you are a very active person, and there does not seem to be any progress. By looking at how you were say a month previously, you will often realise something has indeed improved. It’s a slow process that it is not evident day to day, as it would be with a normal short-term illness, and this point requires a period of acceptance.

You will inevitably be indoors a lot, particularly if your recovery is through the colder months as mine was. Rest as much as you need to, but some form of mental stimulus is important.

I never had this problem, but it occurred to me that work rehabilitation would have been something I would have needed to manage safely and carefully. If your work is physical or requires good balance or dexterity, this will be brought more into focus. I personally found hand writing and keyboard orientation quite tricky for several months and still remain wobbly in situations which require good balance and careful feet placement.

Overall fight to stay optimistic, don’t allow impatience in and focus on again being able to do the things you love the most!

Contact GAIN if you would like your story shared in the next issue of GAINLowdown or on the GAIN website.

Recovering from GBS for a second time at 87

By John Rae

This is my story about recovering from Guillain-Barre syndrome (GBS) after contracting the very rare illness for the second time at the age of 87.

I decided to share my story (with some help from my family) to give hope and inspiration to others with GBS that they too can recover as I have done on both occasions.

My first diagnosis was in 1993, aged 59. On that occasion, doctors diagnosed it very quickly and none of my family had ever heard of GBS. I was transferred to the Neurology Unit at James Cook Hospital, Middlesbrough where I spent about eight weeks in intensive care. I was almost totally paralysed apart from being able to open my eyes and move my head very slightly and required a ventilator for several weeks.