I had a relapse 2 weeks ago (weakness in legs) and finished steroids last week which has got me walking again . I am however really suffering with fatigue and my walking is not as it was which is worrying me. Is this to be expected and will things improve? Guess I just want to get back to normal and am being impatient! Was thinking about taking up swimming but wonder if it is too soon and may make things worse?
Hi,
Sorry, but there’s no such thing as “having a relapse two weeks ago”. An average relapse lasts about five weeks, and they can last several months. I think you’re being unrealistic about how soon you ought to be better - even with steroid treatment,
I’ve had a relapse lasting a year - although I didn’t have steroids for it. Recovery was so slow it was almost imperceptible on a day-to-day basis, but when I looked back to compare to when it first happened, I could tell how far I’d come.
I did eventually get back to 98 or 99% of what I’d been before - you wouldn’t consider me disabled to look at, and I can walk three or four miles, but have poor strength and stamina compared to a healthy person my age - it just doesn’t show to the outside world that I can do the same as others, but with three times as much effort.
I do not think exercise will make things worse as long as you don’t set your goals too high - i.e. to match what you were used to before. I got my walking back up to four miles by gradually increasing - not just going for it two weeks into the relapse. When I first started, I couldn’t walk round to the post office (five minutes), without having to stop after 100 yards for a rest. I just gradually started going a tiny bit further than I was completely comfortable with, waiting 'til I got used to that distance, then upping it again.
I’ve never tried it with swimming, but I recommend the same approach - start with what you would once have called a trivial swim, and work up. Although I’ve never been a regular swimmer, I do find a pool is one place I don’t get as much pain, because the water supports my weight. I ought to go, really, but don’t have anyone to go with. Actually, I’m not sure if going on my own would be better or worse than with someone, as I can only really do doggy-paddle (nothing to do with MS), so would be a bit embarrassed in front of any half-decent swimmer.
Good luck!
Tina
x
my relapses take months to recover from,2 weeks isnt enough time to get over one even with steroids it will take at least 6 weeks before you feel any better,mine tend to last 4 months now before i feel any better.
J x
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Hi I had a 7th nerve palsy/facial palsy last year. From when the facial symptoms first began until resolved was three weeks. However the severe fatigue and mild dizziness, carried on for a three more weeks.
I stayed in bed slept, relaxed as much as I could and not get stressed.
Your progress is normal, Darcy, yep. When I’ve taken steroids they’ve toned down the intensity of the relapse, but the rest’s always been down to time. It is a bit frustrating, I know, but all the steroids can do is minimise the symptoms, they can’t speed up recovery.
I took some in April and found myself thinking they’d not made much difference, so I mentally slapped myself around a bit and made myself remember that the week before I’d been having to practically haul myself up the stairs with both hands on the bannister, and coming down them I was clinging on for dear life for fear of my left leg just giving out on me and pitching me down them. The Medrone took me back to within my normal range of abilities on the stairs but I’m still not over the relapse yet, close, but not quite.
Swimming sounds like an excellent idea! But I agree with not pushing yourself if you do go.
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Everything with MS is so personal and thus unpredictable, it is not possible for anyone (even experts in white coats) to tell you what to expect.
I have (with hindsight) had a number of relapses but only one of any significance. For me, the progression slowly spread for about six or seven weeks before it plateaued and started to melt away. It hasn’t entirely gone though. I doubt it ever will.
But we persist.
For this remission, I continue to do whatever I feel able to. But most vitally, I try to do whatever is most joyful and fulfilling.
Physical effort is one thing, but mental strength i believe is the real key. And so be a diva about all things; demand the best of everything for yourself and avoid stress, anxiety and neuroses like the plague.
Good luck!
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My husband’s relapse started about 3 weeks ago, blurred vision, & loss of feeling in 1 leg, which started to give way from time to time, & mood swings were getting much worse than normal. He is so stubborn & didn’t visit the surgery until today; we only moved to the area last April & he had no need to visit a specialist to date. When he saw the GP, they told him he should have been referred on notifying them of the MS, back when we moved - but instead, it’s taken them 14 months to make a referral, & that’s only when he was feeling too bad to put off going any longer… He should have been put on steroids today, but wasn’t. What can I do? I feel useless & helpless most of the time anyway with other symptoms which make every day a challenge, I just don’t understand how such a condition can be so unimportant to an NHS practise?
I think if MS made you sprout another head it would be more high profit, sadly it seems to need something like that, or for a high profile (and popular) person to develop it.
Totally agree
hi darcy
i had a relapse 13 weeks ago, and although feel better than i did at the time am still not completely back to normal, with problems in speech and cognition being the main problems.
i agree with tina’s point but i really don’t know when i was officially out of relapse. its not easy to assess this for me or it seems, my neurologist who didn;t really know either. swimming is apparently a great help though.
what a very peculiar condition this is eh?
hope you get some answers soon, fluffyollie xx