go hand-in-hand with many neuro diseases/conditions. There is a continuous loss of strength when you try to 'rest', in attempts to keep the pain from getting worse and just having the strength to do very simple things....like eating, going to the bathroom and getting dressed.
I have a CIDP -often referred to as a 'chronic' form of GBS. For the first month after my 'onset' I too had difficulty moving around with those simple 'things'. Diagnosis IS tricky with any neuro issue - AND even with a diagnosis other than 'idiopathic' [idiotic, to me!] only the symptoms can be treated, either thru meds or other therapies -the alternatives are limited.
That said, by my own experiences, [I USED to be very physically active] I knew I had been losing muscle tone and strength over time...SOO I asked for and resquested seriously physical therapy....I learned that neuro docs, and many docs other than orthopedic ones...don't even think of it! I have had four 'rounds' of PT since my 'onset' and I have learned that: a] you have to find a therapist who understands the needs of a person with such debilitating diseases - one who understands you simply cannot go all-out doing a certain task and not get additional damage; b] someone who understands folks who have had stroke nerve-muscle losses, cancer-same, and possibly/probably folks who have MS...
You can and do lose muscle strength and tone....as time goes by-IF you do nothing you WILL lose more reflex actions...The consequences of doing nothing add up to lots worse consequences...such as further loss of balance, increased falls [thus breaks-I'm guilty to a degree] and greater mobility limits.
BE SURE TO ASK YOUR DOC as he writes out PT orders to include training and tools to do things at home...many exercises and 'tasks', while they seem silly at first, can and do help you build up in little bits the strength and flexibility to be more stable. Harder is to keep at it once the PT ends..You HAVE to keep at it tho? As exercise and movement helps keep the circulation going and allows you to plain old get around.
About the 'little bits' philosophy? I've found that IF I have to do three rounds of 10-20 reps of anythng I go double-dead-dog numb! [Overdoing it is NOT on the PN menu!] But, if I do 4-8 rounds of five to ten reps over the course of a day at home...well IT adds up and eventually I can do the big reps -just takes time and building. It can happen, it takes caution and it is worth it!
A couple of sites worth visiting for exercises are:
http://www.acefitness.org/getfit/freeexercise.aspx#13
http://www.fairview.org/healthlibrar.../sma_index.htm
I prefer the graphics in the second.
All you need is a hand-weight or two, therabands [lite and medium strength] and maybe some other tools....BUT you need a therapist to teach you how to use them RIGHT! Otherwise you could inadvertently do yourself some wrong things in trying to help yourself.
I hope these help you in some way or form...and that you will seek and get PT.
I can only say that because I went and got the PT, I am still mobile on my own two feet [with a cane] and can drive [tho very cautiously] and get around [tho not for long periods] on my own steam. I do believe that had I not gotten the PT when I had-I would be either walker or wheelchair dependent. You asked, because your own mind/body was probably telling you the same 'things' mine was about all that has/is happened/ing to me. Ask! Worse that can happen is a 'no'. So you ask another of your many docs who take care of you! Unless you are in a 'managed' care type of insurance plan...most docs won't decline such a request-it's no skin off their noses or backs [so to speak]. Besides, if you can get out to a PT place, heck! You get out of the house for a legit purpose! And you get to meet other folks who help you keep your own issues/conditions in perspective.
's and hope! - j