I'm still scratching my head with my fnd diagnosis, and after the latest cold and dismissive gp appointment, I am researching harder than ever to try to confirm this diagnosis in my own mind...
I was curious as to how others were affected in their walking?
After I'm well rested, such as first thing, I simply waddle (with some balance issues which is I think related to nystagmus that I seem to have developed recently, and gets worse with tiredness). Then once I am trying to cover more than 5 to 10 metres my legs start to get tired, until my left hip seems to give up completely and I have to 'throw it' through to move forward. After around 10 metres I can't get much further, and have to use a wheelchair. The exertion of trying to walk makes me feel exhausted and a little unwell, and if I continue to try to push it, things like my speech and swallowing become affected (but these other symptoms usually resolve within a few minutes if I then properly rest).
If I get too hot this also makes things much worse (slightly worrying with a summer holiday booked in July :o!).
I was really interested how many people recognised this pattern of rest, and feeling much better?
I have now learnt if I need to function better on a particular day, I just need to make sure that I walk as little as possible and use my chair for the whole day the day before, even for short walks to the loo etc. In other words not exerting myself at all, then I can function so much better for the following day (Unfortunately careful pacing hasn't worked for me to improve things long term).
Does this sound familiar?