Introduction and a question

[gutti]

I'm glad I found you, guys, because I live in Hungary and there isn't any platform for those who choose to be active in MS.

I'm a 34 year old girl. Usually I exercise 5-6 days per week. I do pilates, squash, hiking, inline skating, running. Fortunately my MS looks benign for now, I had only 3 exacerbations in 10 years and all of them were primarily sensory ones.

I've been an old fan of your website but I registered today because I have a question I cannot ask from my doctor because medical protocols overprotect the patients. I guess it is safer for doctors for legal reasons.

I'm having an exacerbation right now for 3 weeks. The right half of my body has paraesthesia and my right arm is a bit involved motorically as it feels a bit weak and I have tiny coordination issues. My question is, when do you suggest to start being active again? Is it allowed to do sports during exacerbations? And the most important: I planned to hike the Olympos, the top of Greece 5 weeks from now... do I have to cancel this journey?

I will be very grateful if you can give me some advice.

[AMFADVENTURES]

Gutti,
Glad you found us too. In answer to your question, before I knew I had MS I was a runner. I used to experience bouts of fatigue which I wrote off to where I was living at the time. I also experienced kind of an uncoordinated right foot that I wrote off to complications from a previous accident.

When I was hit by the fatigue, I used to pick up my running, either running further or harder. It seemed to alleviate the fatigue to some extent and it seemed to help the bouts of fatigue pass. At the same time, it kind of exaggerated the uncoordinated right foot temporarily, but I could live with that.

Eventually I was diagnosed with MS but to the best of my knowledge exercising harder through what turned out to be exacerbations, didn't hurt and in hind sight, may have helped. The foot drop continued to get worse, to the point I occasionally fell while on my runs but I never seriously injured myself and I don't believe running made it worse than it would have become anyway.

The day I was initially diagnosed was the last day I ever ran. I'd done a seriously labored half mile run but that was an exceptionally bad day, it wasn't usually like that. To this day I regret not continuing to run. I may have had to stop eventually but who knows, I might have been able to run for several more years.

So, I'd say, don't slow down. If the MS stops you, fine, but get back up as soon as you can and continue on.

[ActiveMSers]

Gutti, what Larry said (note, his official title is MS Yoda). There is zero evidence exercising during a relapse makes your MS worse, but you may want to take it a bit easier due to your coordination issues. You don't want to fall, because that could indeed mess you up and potentially derail your trip.

There's no telling how long your relapse might last--it could be days, weeks or months. But in my experience symptoms don't *usually* get worse, they remit (hence relapse-remitting). If you think you can hike Olympos today, odds are good you'll be able to tackle it in five weeks. Let us know how it goes!

[cl3me]

During a mild relapse or exacerbation I tone down the intensity or type of exercise....

Horse back riding I will just groom and hang out with my horse or go for a short walk instead of an hour trail ride with galloping.

I may do a yoga video or use Wii Fit at home instead of going to gym or doing an hour bike ride.

And allow more recovery time especially if the fatigue hits. Nap

Listen to your body, if is says rest, or you try something and its feeling off, leave it for another day. IF it is a severe relapse, I rest.

[Suebee]

I understand how doctors can't tell you its ok... if you wait for that, you'll never do anything! I broke all my toes and bone in my foot before a ski spring break when I was in college. I skied on my foot, but i had to listen to my body. I taped the toes for every run and made sure my boot was tight. It was great. I'm glad I didn't miss it.

I also hiked a mountain with friends after one MS flare. I got a map of the trail and planned where I would stop and my friends would go on to top. I carried enough provisions, a book, and had shelter. I discussed with friends ahead of time so there wasn't any urging me on. It's hard sometimes for non msers to understand the suddenness of muscle weakness and fatigue that can happen with MS. I was glad I went, but I was honest with myself about what I should attempt.

I haven't always been so cautious. One glorious early morning I took a swim in a pool at a bed and breakfast I was staying at. I was unfamiliar with the pool. I swam laps and did it until i felt I had a great workout. But when I attempted to get out of the pool, I noticed it had no ladder or stairs, and the water level was not close to the ornate stone surround. I was unable to lift myself out, and the more I tried, the weaker i became. I eventually got myself out. But I never swam alone again. It isn't a good idea even if you're healthy.

I also got myself in difficult situation in a kayak. I went with friends and trusted that if they could navigate the waterway so could I. The end of our trip required us to cross a channel with a very strong current. i had been fine until this part. It required strong paddling on my weak side and i was unable to keep on course. Two other kayackers got on each side of me and helped me get across. It was very harrowing and i was so weak that I was unable to walk onto shore. So it is what it is - either I must tandem kayack or be in placid waters.
So take your trip, live it up. But be safe. Only you can decide what parameters to put on your activities. Research where and what you'll be doing and have modified activities for yourself if needed.
Have a great time!

[gutti]

Thank you for all of you who shared your experiences and thoughts. You encouraged me not to give up exercising and hiking.

When my flare-up seemed to stop I returned to run and walk longer distances. But after a week my paraesthesia has spread to the left side of my body so I stopped exercise again. That's why I made the choice to cancel the Greek journey and postpone it to the next summer. I was supposed to leave yesterday.

I hope you're not disappointed in my decision but I listened to my body's response even if I'm not sure this was actually a response to doing sports. The Olympos will be there next year and we will get closer friends if I won't be afraid of it.

[girl1dir]

Thank you for all of you who shared your experiences and thoughts. You encouraged me not to give up exercising and hiking.

When my flare-up seemed to stop I returned to run and walk longer distances. But after a week my paraesthesia has spread to the left side of my body so I stopped exercise again. That's why I made the choice to cancel the Greek journey and postpone it to the next summer. I was supposed to leave yesterday.

I hope you're not disappointed in my decision but I listened to my body's response even if I'm not sure this was actually a response to doing sports. The Olympos will be there next year and we will get closer friends if I won't be afraid of it.

I am a little late to the conversation but I don't think anyone would ever be disappointed in you for making the right choice for you. =) We all have to listen to our bodies and know when to take it easy and when to give it a little extra push.

Hope you feel better very very soon! <3