Forum

Weak legs

Hi everyone, I am diagnosed a year ago this month,although misdiagnosed for about 10.

most of my symptoms are similar to what I read here which is why this site is a godsend to me.

however my legs are playing up, I can walk up to 10 feet maybe 15 over and over again all day long stopping in between when at work or home. I am tired and legs feel a bit wobbly at the end of the day but bearable. But if I walk more than 40 or 50 feet in one go I am floored, shaking with exhaustion and only fit for bed for a couple of days.

i have tried using a rollator to see will this help, and while I feel more secure when out still the same end result.

Can an anyone shed any light on this for me,

regards

Ann x

Hi Ann,

I’m not sure if you’re looking for practical advice (sorry, don’t know any, but I expect somebody will), or some kind of explanation.

You appear to be under the impression (sorry if I’ve misunderstood) that this symptom is rare or strange. On the contrary, I think it’s a very common problem with MS.

I’ve seen it referred to as: “fatigability” - which is a useful word. It’s not quite the same as fatigue, but means: “susceptible to fatigue”, which means you might be able to do something, but NOT over extended times or distances, because the fatigue will cut in.

Following a relapse, I did manage to extend my walking range considerably with gruelling practice (going slightly further than I’m comfortable with, until that becomes easy, then up it again, and so on), BUT improvement from a relapse is usually expected anyway, so I don’t know if I would eventually have reached the same state without doing anything.

If it’s NOT a relapse, but just the way you are now, I’m not sure to what extent (if at all) pushing the boundary can actually improve your range.

Tina

x

Hi Tina, you understood me perfectly thank you for your reply. I didn’t realise that this was normal I am still in the early days of learning about all Ms entails. Fatigability is a new word for me but it makes sense when I think about it. I find the walking issues so frustrating and limiting, I am not in relapse so it’s something I am just going to have to get used to.

thank you,

ann x

hi Ann

It’s not so much with walking that I notice this but rather with EVERYTHING. I seem to have a ten minute window. Do something for ten minutes, take a rest and I can do ten minutes more, maybe three or 4 times and still be OK. That’s 40 minutes on a task broken up with cups of tea etc. now if I try to do 40 minutes in one go - trembling, fit for nothing other than bed. It’s weird and takes some getting used to. I have learnt the hard way that tasks must be broken up into little chunks or I will write myself off.

Jane

Hi Jane, thank you for replying. While the walking is the most annoying I have noticed the same as yourself regarding tasks. It is so frustrating. I am finding it difficult to pace myself but know I have to learn. You are right it is going to take getting used to.

ann x

Hi, yeh, as the others have said, weak legs/fatigue are common problems with ms. But are you on baclofen? When I was on it, it actually caused more falls for me…and I do think it put me in a wheelchair so early on in my life.

I am interested to know what you were wrongly diagnosed with…as I was wrongly diagnosed with PPMS for many years.

Seems like we were on opposite side of the table, eh?

I saw 16 neuros before I was finally told it defo isnt MS, but spastic paraplega…cause unkown.

pollx

Hi Anne, ditto above. Fatigue yucky. But if I sit still too long I creak up also, so fine balance. Boring boring boring… Take care xx

Hi Poll, not on baclofen made my legs weaker like they were made of jelly.

i was misdiagnosed for 10 years with fibromyalgia, I always knew that there was something else but was not listened to. It all came to a head when I staged a sit in while at the rhuematologists office and refused to leave without a nuero referral. One hour later with his waiting room overflowing, he wrote me a 3 line referral saying I was imaging symptoms I didn’t have.

thankfully the nuero seen me within weeks and after 10 mins said he thought it was neurological and 3 months later had a confirmed diagnosis of Ms.

slug I also get very stiff if I sit or stand too long, pain in the a**e literally.

regards,

ann xx