I've not used a web based forum like this appart from once on an OU course so not too familiar with how things work.
Thanks for the welcome message LanceB
I particularly joined as I was looking for any advice or information on the long term impact of GBS.
I had been recovering really well, had come off most meds and was starting to feel a bit more like myself again. Then late last year I started getting severe attacks of nerve pain in my left leg - this was in part due to doing a lot of driving and moving to an automatic helped as did starting back on pregabalin low dose. However, whilst this improved I have found since January I have started getting weakness and pains in both legs and increased fatigue.
The web sites I've found info on GBS do say that for some sympotoms can reoccur many years after initial attack (mine was in Jan 2013) but don't say what may help or what should be done.
I've had to increase meds again and have continued with the gym although this is tiring. Anyone able to offer any advice or further info?
My GP is also thinking about referring me back to neurology so again anyone able to offer any thoughts on the possible value of this?
All this started for me back in 1982. Since then I have had long periods of being mostly symptom free, with the exception of the symptoms that never really subsided in the first place. However, I have experienced periods of symptom "flare-ups".
I believe that, for me, these occur when my immune system is at a low point. I become anxious, stressed, exhausted and/or come down with a virus or infection. That usually leads to an increase in the severity of my remaining symptoms, or a recurrence of symptoms that I have been free from. I have noticed that when I try to continue on, full steam ahead, without taking the time to recover, I continue to decline, quickly.
It took me several years to come to terms with the fact that when my body says slow down, I REALLY need to listen. When I don't bad things happen. The best way I have found to avoid these times is staying as healthy and well rested as possible. Even when I'm doing everything right, sometimes stuff still happens. Each day I tweak the balance between trying to live an active full lifestyle and preventing illness and fatigue. Time has definitely worked to my advantage and I'm much better at it now than I used to be.
While I haven't had to return to a neurologist, I did move from a GP to an Internist three years ago. He has been able to help me more actively manage my health and that has made a big difference. I would not hesitate to visit a neurologist if I thought I needed to though.
So much about GBS is unique to each person. It may take you so time to figure out what works best for you. Until then, be careful about pushing too hard when you're going through a rough patch, you may end up worsening your symptoms.
I hope your doctors can assist you in managing your symptoms and recovery. Stay positive and be kind to yourself, it does get better!
I have tried to maintain a healthy lifestyle and get balance right between being active. I'm trying to come to terms with the fact that I can't always do the things I would like to (e.g. my main leisure activity was hill walking which I've not been able to go back to in any serious way since being ill) but I do find it quite hard at times. Time and experience definately helps work out what I should and shouldn't do.
I guess I have had quite a demanding time at work recently with some new developments which I'm leading on so this may have contributed. I will look at ways to reduce demands and try to be careful not to overdo things (in work and the gym)
Thanks again
Cysgu
Charlotte said:
Welcome cysgu
All this started for me back in 1982. Since then I have had long periods of being mostly symptom free, with the exception of the symptoms that never really subsided in the first place. However, I have experienced periods of symptom "flare-ups".
I believe that, for me, these occur when my immune system is at a low point. I become anxious, stressed, exhausted and/or come down with a virus or infection. That usually leads to an increase in the severity of my remaining symptoms, or a recurrence of symptoms that I have been free from. I have noticed that when I try to continue on, full steam ahead, without taking the time to recover, I continue to decline, quickly.
It took me several years to come to terms with the fact that when my body says slow down, I REALLY need to listen. When I don't bad things happen. The best way I have found to avoid these times is staying as healthy and well rested as possible. Even when I'm doing everything right, sometimes stuff still happens. Each day I tweak the balance between trying to live an active full lifestyle and preventing illness and fatigue. Time has definitely worked to my advantage and I'm much better at it now than I used to be.
While I haven't had to return to a neurologist, I did move from a GP to an Internist three years ago. He has been able to help me more actively manage my health and that has made a big difference. I would not hesitate to visit a neurologist if I thought I needed to though.
So much about GBS is unique to each person. It may take you so time to figure out what works best for you. Until then, be careful about pushing too hard when you're going through a rough patch, you may end up worsening your symptoms.
I hope your doctors can assist you in managing your symptoms and recovery. Stay positive and be kind to yourself, it does get better!