October 26, 2017 at 10:45 pm
To Electra: Thank you so, so much for your comment. So incredibly helpful. I really like your explanation of “pacing” – definitely makes sense. A log book is such a good idea. I hadn’t thought of that but will definitely give it a go. I am absolutely learning more and more that recovery from GBS is a “fluctuating learning curve” which requires a lot of patience and self-compassion (two things I probably needed to learn), and completely know what you mean about stepping down from a curb! And stairs, or on a bad day, any kind of incline of the ground. I remember learning at uni that for an untrained elderly person, just stepping up a stair can require up to 90% of their one rep max for quadriceps strength… I’m like, well that’s me now – but patience.
Thanks for the link to the article. (I’m completely technologically challenged as well, don’t worry.)
Also, do you have any tips for explaining to people e.g. employers, colleagues, what recovery from GBS actually involves? Because it is difficult to explain and for people to understand that just because I don’t need my walking stick all the time anymore, and I look “completely normal” (unless I try to walk a moderate distance on a good day/shorter distance on an average day), it is still a long process to full recovery.
Thanks again! Good luck to you. I wish you all the best with your recovery journey, and know that you have the strength to achieve whatever your goals are! (That goes for everyone who is reading, too.)October 26, 2017 at 8:45 pm
Awesome! Thanks for the tip!October 22, 2017 at 12:07 am
Thanks so much for your reply and your suggestions! I have thought about water aerobics and it’s coming into summer here (I’m in NSW, Australia) so it will be a bonus to cool down. (I can swim fine – pre-GBS, have not been in a pool since then – I’ve always just been really slow) Trying something different might be good for me too 🙂 Good luck with finding a job that suits you! I hope it all works out for you and you find something that is the right fit.
I am studying physio (my experience with GBS has actually been quite interesting from a professional perspective, experiencing what it is like to be a patient), but usually work waitressing/bartending which is definitely still off the cards (the fast-paced nature of hospitality is one the reasons I really enjoy it – but not too helpful at the moment, of course).
Do you have any tips for knowing how to “pace” yourself? I’ve been told that I need to pace myself by about 50 different people, but I struggle with that because I’ve always been a “go, go, go” kind of person and have always had trouble “pacing myself” in general in life 🙂 Since GBS, I don’t usually recognise when I’m “overdoing it” at the time, it’s not until the next day when everything is tight, sore and walking around isn’t too easy that I realise I have overdone it. And it doesn’t help that each day is different in terms of limitations and fatigue tolerance. Any tips?
Thanks again! Best wishes to you.October 10, 2017 at 7:29 pm
Hi GH, yes he did and my reflexes were actually preserved which was interesting because (like you) most people have diminished or absent reflexes with GBS. But the neurologist who I saw the next day said that GBS never occurs exactly as the medical textbooks say, and it is likely that a person with GBS will have most (not all) of the symptoms you would expect.October 8, 2017 at 12:50 am
Hi!! Yes I had a very similar experience to you, and was even diagnosed in August 2017 as well. I completely agree with you, and consider myself to be extremely lucky as well! I have no residual tingling or sensory disturbance, but still quite weak in the legs and left arm particularly (compared to my normal), and struggle with fatigue, muscle tightness and a bit of muscular pain, especially if I “overdo it” (I am still working out what “overdoing it” actually means, especially because it seems to be different on different days). Otherwise I am going so well! Walking well in general, fully functionally independent and mentally great (except my short term memory has been off since I was in hospital… not sure if that’s a product of the GBS or fatigue). I am actually a physiotherapy student so, through the whole ordeal, I have learned a great deal about neurology, neuro rehab, what it’s like to be on the other side of health care (having never been in hospital before as a patient), and what it’s like to have a neurological condition that is very relevant to my future profession. I think the whole experience will make me more empathetic to my patients (regardless of their condition/injury) and make me a better physio for it. Anyway this is how it all happened for me:
End of July: contracted the flu and a bad sinus infection. Apart from one instance when I had the flu as a child, it was probably the sickest I had ever felt. Kicked the flu over about a week and the sinus infection improved over a couple of weeks. Worked out and went running over this period probably a lot more than I should have.
13 Aug: Ran City2Surf, a 14km fun run in Sydney, in decent time.
16 Aug: developed tingling and muscle spasms in left foot, moving up the lower leg and started in the right foot.
17 Aug: tingling increased in both legs and feet but the left was worse, left foot went numb, and tingling and pain started in hands and wrists. Went to GP that afternoon who said go to ED – ED doctors said “don’t know. Probably a weird response of your body to running a 14km up and down hills while still recovering from the flu/sinusitis”. Tingling became really painful that night and hardly could walk on left foot, so went back to ED, waited 6hrs to be seen (nurse said to my mum “to be completely honest, she doesn’t look that sick and there are lots of other people with more serious problems that need to be seen to”). ED doctor said same thing as previous dr and said to come back to hospital if things became worse.
18-20 Aug: Tingling became a lot less painful (thankfully), but legs became really weak starting from feet and lower legs. They felt as heavy as concrete but my joints felt unstable like jelly at the same time (if that makes sense). Also had bad low back pain and neck pain. My hands were also getting weaker.
Afternoon of 20 Aug: went back to hospital (different hospital… Mum brought me home, rural town 4 hrs away, from uni on 19 Aug). Could walk about 3 steps at this point. Assessed by dr who thought GBS was unlikely (more likely to be coming from my low back), but spoke to neurologist on the phone who said admit me and she would see me in the morning.
21 Aug: Diagnosed with GBS by neurologist and started on IVIG that afternoon, with MRI to rule out MS to be conducted later on (all clear thankfully!). Could walk very short distances with walking stick, but couldn’t shower myself. Dad pushed me around the hospital grounds in a wheelchair every afternoon and did “donuts” (hopefully that is not an Aussie slang term… spun me around in the wheelchair) haha.
On IVIG for 5 days, and started to improve a bit – could stand and walk short distances without the walking stick.
25 Aug: discharged with my very own walking stick which I “bedazzled” with stickers.
Couple of weeks later: Had follow-up nerve conduction study which showed peripheral demylination (resulting in latency and fatigue of nerve conduction) in my arms and legs (but legs much worse), exactly what you would expect for GBS, which will heal over time (not quickly though).
Now: back doing full-time uni (actually didn’t miss out on any uni, because it happened during the holidays), work experience, driving, etc and seem to everyone else “completely normal”. Still not physically strong enough or have enough endurance to work at my waitressing/bartending job.
Neurologist says it will probably take at least 6 months (from diagnosis) to feel completely back to normal. She also said that recovery from GBS seems to happen really fast until you are about 80% or so better, then it takes a much longer time to get the last 20% back (definitely seems that way with me). Also she said that often it goes in ups and downs, like you can be really really good (almost normal) one week, and then the next week it’s like you’ve gone 5 steps backward. But as long as you are still making progress, that is what’s important!
So incredibly lucky to have recovered this well so far and continuing to do so. Everyone stay strong and stay positive!! Hope this helps.