Hi there, I am 31 and was diagnosed with MS in march this year. The symptoms I had disappeared shortly after (numbness and tingling in legs). I have since been just trying to carry on as normal, we are an active family and always have been but last week we climbed our usual hill walk and I physically couldn’t do it! I had to sit so many times during the walk and since then can barely manage the stairs :(. I thought I was doing ok and my consultant was confident it could be years before I had any symptoms but now I’m worried this is it, I wanted my life to be as normal as possible for the kids but they were so shocked at my change last week it scared us all, I may be over reacting but I don’t want this to be the start of a downturn for me but am I kidding myself I can just carry on as I was?
Hi anon Sorry to hear of your diagnosis, I’m guessing you were dx with rrms? Are you taking any dmd’s? It could be you are having a relapse and a course of steroids could cut it short. If you have a ms nurse I would give them a call explaining this new symptom, otherwise talk to your neuro or GP. Hopefully it Wong last and u will be back to hill walking soon. Good luck.
You might have to make some changes, but that doesn’t mean life is over. Many people of all ages can’t cope with “hill walks” - some would not dream of classing themselves as disabled.
It sounds like you have simply overdone it, and are now paying the price. You can’t just ignore that you are ill. I can’t cite statistics, but I think it’s probably fair to say most people with MS will be aware everything’s not fine, even when not actively relapsing. So it may have been a bit unrealistic to think you could go “years” without any symptoms. However, it still might be years before it’s anything that can’t be managed with a bit of pacing yourself, and more careful planning. When you go for a walk, must it be a hill walk? Are there no other kinds of walk locally? Could you go somewhere that would be a bit of a change of scene, as well as less tiring for you, without insisting you must do exactly as you always have? Flexibility is key.
If you want to do a more challenging walk, think about what else you’re going to be doing that day, or even that whole week. Try to pace yourself so you won’t be doing a load of high-energy stuff either immediately before or after the challenging thing you want to do. Make sure you haven’t exhausted yourself on something else before you start, and that you’ve built in enough time to recuperate.
Yes, I know it’s a pain having to plan these things out in advance, and not just go with the flow, but honestly, just small things like making sure you haven’t agreed to two demanding activities in one day, because you’ll be tired from the first, can make a difference.
Yes, you can still have days when you do more than is probably good for you. But then you have to accept the bargain that you’re probably going to feel rough afterwards. It’s not always a bad bargain: if you really want to do something, sometimes it’s fine to do it anyway, and take the hit. As long as you’ve weighed it up before you start, and know that is the deal. Then you don’t get any nasty surprises, and can say: “Yep, I did expect to feel rough afterwards, and that was my choice!”
Thanks for your replies, I am not on any medication as I have only had 2 relapses in the last year my consultant said I wouldn’t warrant it and to be honest the longer I can go without medication the better I guess. I think I need to accept / acknowledge the diagnosis fully, I’ve kind of put it to the back of my mind until now and it’s hit me hard this week that I do need to bear it in mind in the things we do from now on and actually I had had a mega busy day / late night the night before which probably didn’t help at all! It’s hard for me as I haven’t quite grasped the concept of a relapse, is this one or did I just do too much and need a couple of days rest, in reality I may never know, such a confusing disease
Hi again Lugor,
Just a couple of things: two relapses a year isn’t extreme, but it’s still quite frequent. The normal threshold for DMDs is only half that, at two relapses in TWO years, although they do have to be “clinically significant”. It’s possible your consultant didn’t judge yours to be, as “clinically significant” isn’t defined, so some take the view it’s only “disabling” relapses, and purely sensory ones (like the one you describe in your opening post) don’t count. So you may have had “enough” relapses - just not ones he thinks are serious enough.
I’m certainly not trying to foist DMDs on you, as I was offered them, but declined - with my neuro’s blessing, I hasten to add; not against medical advice. A decision I’m still cool with, three years later. I just thought you should know that two relapses a year aren’t below the threshold for medication, but could be, if he didn’t think they were serious.
For the rest, it’s possible you have had another relapse that actually was nothing to do with the walk, and just a coincidence. However, it does sound to me more like a classic case of thinking you can still do everything, but finding out the hard way that you can’t. In future, you might have to choose the busy day/late night OR the hill walk, but accept you’re not going to do all of it back-to-back, without a problem. With time, you will learn to judge what’s likely to be OK, and what’s not - although you’ll still get caught sometimes.
I went on a four-mile organised walk on Monday. This all seemed to go very well, although there was a short walk AND a bus ride to/from the meeting point, so that probably added another mile, and I had to wait a whole hour for the bus back. By the time I got home, I was not feeling things had gone quite so well, and by teatime, I was enduring the most painful cramps for many months, and was left sweating and shaking. I don’t think it’s coincidence this happened on a day I thought I could walk five miles, and stand an hour for the bus too. I’d still done it - just not without payback. Tuesday wasn’t very good either. It was entirely my fault; I knew I’d overdone it. I don’t regret the walk - if I don’t test my limits from time to time, how will I know where they are? But the hour’s wait for the bus afterwards was probably what turned a satisfying achievement into a bit of an: “Oops!”. These things happen.