Question for BigA (or others): Running and MS?

[hope32]

Quick background, I've had MS for 2001, I'm 37 now, and am thankful that it has been relatively mild overall thus far.

I have worked out on a fairly regular basis since having it, though I've gone through different phases (aerobics classes, tae bo, elliptical, Jillian Michael's 30 Day Shred, etc.)

A year ago, I started running. I did Couch to 5K. I ran my first 5K in May and finished in 36:05. I then set a goal of finishing it in under 30 minutes and have done that twice (29:29 on Thanksgiving morning and 29:20 in another race a few weeks later).

MS helps motivate me to run; I never want to take for granted that I have a body that can run, and I want to take advantage of that as long as I can.

However.

I had an insane 2013 (I'm a SAHM to preschooler twin boys, husband was diagnosed with heart disease in June so a lot has been on my plate since then, 4 separate heart surgeries and recoveries for him, we bought a house and moved in August ...)

In October I started Tecfidera and have struggled with somewhat increased fatigue and drowsiness since then. I've never been a really high energy person. For a while I was trying to run 3x/wk and also do a Jillian Michaels DVD 3x/wk for strength training. I cut back b/c it seemed like I didn't have the energy for all that exercise and keeping up with my kids, housework, etc. Now I'm mostly just running 3x/wk and trying to figure out what would be doable in terms of strength training.

Now I'm not really sure what to do. I'm not sure if it's really the Tec, or partly an MS thing that I'm overdoing it and paying the price. i.e. on Tuesday morning, I got a good run in ... but my energy was ZAPPED the rest of the day. I struggled with getting things done and ended up having to put off a lot of my to do list (cleaning bathrooms, etc.) till the next day.

BigA, I noticed in another thread you told another member not to run. Is that a general guideline for people with MS? I'm curious for your or anyone else's insights on this. Think it's the Tec or the MS? Should I trial off Tec and see if my energy improves? If I do need to cut back on exercise, what's reasonable? What should I aim for? I'd love to set new goals with running but I'm not sure if I'm going to be able to push myself harder than I already have ... or maybe I should focus on other ways to boost my energy. Thoughts?

[Roamerwithroots]

I am struggling with a similar issue. I have been a runner for about six years and have done a bunch of half marathons and trail races. Over the past few months I've gotten an MS diagnosis (in September) and moved across the country and started a new job. I just started Tec six days ago.

Running has been on the back burner. But it's what has kept me grounded for years when other things have gotten out of control (family illness, etc). I intend to keep running, even if it means I have to listen to my body more than I ever did before. Balance is the key. I friended a guy on facebook, Lyle Anderson, who is an Ironman with MS. Google him and you will see some amazing videos about him. He has kindly emailed me back when I've asked how he's managed things....he's on rebif. He said that if he is struggling with fatigue he focuses more on shorter workouts more often, rather than the duration of a specific workout.

So for me, if I was running 5 miles at a time before, now if I'm feeling tired, maybe I'll just go out for 2-3 instead.

I'm happy to be of support if it means we can be supportive athletes with MS.

[Special Kay]

I'm a runner with MS and I personally think it is a huge part of what is keeping me as well as I am. I have had no flares since my very first one, in 2006.

Running, yoga, Tysabri, and diet are the main tools in my toolbox.

I have been a "serious" runner for 20 years with 7 marathons, and many many shorter races under my belt. Needless to say, running is a big part of my life (including my social life).

I do run less than I used to, and more slowly since my main symptom is a slight gait disturbance. For me, with a gait issue, avoiding bio-mechanical injury is the biggest factor. Yoga and PT helps with that. And I have also found that it is quite a bit harder for me to build fitness now -- takes longer and I'm easily thrown off course. That might be age as well (I'm 50).

I still race, but less frequently (used to be about once a month, "in season"). I do hope and intend to run at least one more marathon, post MS. The plan right now is for 2015. I have no reason to think I can't do it, but we'll see how 2014 goes.

Having said all that, I'm a very average runner, with a non-runner's body, nothing special, just like all those people you see plodding to the finish line in the later hours of your local marathon!

And yet it makes me so happy and so much more productive and alive, and just everything is so much easier, including MS.

Run if you can!

[Roamerwithroots]

Special Kay,

THANK YOU for chiming in. It's so important for us to know that there are active people with MS around. My initial issue was optic neuritis which has since disappeared.

I also wanted to mention that I started getting acupuncture last weekend for fatigue - I've been 3 times and that combined with an herb they gave me that I take daily, I am really feeling a difference. I recommend acupuncture for fatigue.

I'm going to keep running too!

[Special Kay]

Roamer: Keep on truckin!

My first neurologist, not an MS specialist, pre-diagnosis, told me I was making myself sick by running too much, which he defined as more than he himself ran.

Foolishly, I cut way back on my mileage to see if he was right. Of course he was wrong, and it took me a long time to build back up. I find that maintaining a baseline of fitness, even if at a lower level than you had previously, is pretty key with MS and not having exercise wipe you out.

I have a friend who is a nationally competitive cyclist in his 60s who has no adverse blood values, or heart problems, or arthritis, or any health complaints or problems, and his GP recently asked him, "don't you think maybe you're overdoing it...at your age?"

Don't let them tell you you can't or shouldn't do something you know in your heart you can do.

[Alex94]

I used to run a lot, usually 10K five times a week. Also, I did lots of other sports - cycling, swimming, snowboarding.

I gave up running when I got diagnosed, mainly because I was struggling while on steroids and after (about three months).

Then I started again, but stopped when I moved out and started university. At first, I had no time, but after a while I realised I simply wouldn't make it.

My legs were weak, I was extremely fatigued, all of my symptoms got worse. It wasn't a ''proper'' reapse, according to my neuro, but for me it was a big deal. Apart from spending a couple of hours at uni, I couldn't do much more.

Now I feel better, so I decided to go to the gym and start running again. Basicaly, I'm listening to my body all the time - when a bad time comes, I'll take another break. Meanwhile, when everything is fine, I try to make the most of it

[hope32]

Thanks so much for the responses, and I'd love to hear from any others who would like to chime in. I appreciate it!

My energy has gone up a little bit since I started experimenting with a few supplements. I think it may be the B12.

I was just off Tec for a week because of insurance issues. Took my first pill last night and was hit by fatigue about an hour later. :/ So I do think unfortunately that is a factor. I guess I'll just keep going with some trial and error to see what I can do, listening to my body as best I can and experimenting with other ways to boost my energy.

[hope32]

Also ... it's neat to connect with other runners with MS.
The NP at my MS Center has MS and she told me she ran a 5K on Thanksgiving morning, too. That was cool to hear.

I am doing a 10K Training Plan starting today and also want to run a 5K in under 28 minutes this year but I'm going to get into training a bit and see how my body responds before I sign up for another race.

[Roamerwithroots]

I really, really need the support on here! I haven't run in several weeks (basically since I started Tec, as I was trying to see how I'd feel) and now I am working myself up mentally to get back to it. I think about the spring of 2013 and how I ran a trail 1/2 marathon, and now I'm back to 3 miles (maybe) at a time. I have had to start from scratch several times over the past few years for various reasons, and I know I can do it, but it's such a mental hurdle to get past.

I did finally put my bike on a trainer last night and rode for 30 minutes. Tomorrow I'm going to hit a yoga studio. And hopefully Sunday I'll get a trail run/hike in.

Every bit counts. I'm signed up for a road 1/2 in June, so I have to get my butt in gear!!!

[BigA]

Hope,

I'm sorry I missed this. I never spoke against running, maybe just don't start immediately and don't start on a treadmill if you're heavy (start on the elliptical).

I finished my first 5k, loads slower than you. I'm so glad to see another busy MS person. I'm a man and I work every day and go to the gym nearly every day. I've got no one to tell how tired I am and how difficult it can be. I'm happy to share, though I wish you weren't so tired.

Did you try dropping the Tec? Were you on something before and switched? There are some of us who only became athletic after getting MS. It's easier for us, I think, because we don't have any old goals to meet or beat - it's all positive.

So see if it's the Tec and keep going. Just don't push too too hard, but otherwise, I think it's all good.

Good Luck. Let us know how you're doing.

[Roamerwithroots]

I just wanted to chime in again and say I've been running almost regularly lately - and have a 10K coming up this weekend that I'll run in my new shamrock socks. I feel so lucky and blessed to have the ability and the desire to continue to do what makes me feel good!

Keep on trucking, everyone!!!

[tennismom]

So happy to find this thread

Hi! I was just diagnosed May 1st after being "probable MS" since September. I play tennis a few times a week and was running before September, which actually lead to me finally going to a doctor about my symptoms. My feet would go numb part way through a run and the numbness and tingling would start moving up my legs. When I actually tripped because of it, my husband insisted I go to the doctor. Ever since then, I have been hesitant to run. The few times I've tried, my left leg is painful and weak and I'm done for the day. I have started walking (fast) regularly but haven't tried running recently. Think I'm going to start slow and see how it goes!

[Justsayyes]

I'm still very active, but it is always a balancing act to work out just enough, and not to the point of overtraining.

It is key to find what you can do. I can no longer run, and can't even walk for long periods. I just stumble and stagger too much when I get tired.

I can figure skate for an hour or two on a good day. I can bike for miles. I can weight train to my heart's content. I do powerlifting class that leaves me soaking wet. I can swim (I just started today). All those things I can do!

Keep trying, think about alternatives, do as much as you can for as long as you can. Best of luck to all you athletes out there!

[sardi_g]

I went inline skating at the park today. I took a bottle of water and mainly poured it on my head. There are water fountains along the way to fill up. The trail goes past a museum, lake, planetarium, zoo, among other cool stuff and today I saw some people riding horses. It's a beautiful park.

I knew my left leg would go numb and am learning to compensate on my rt leg and to focus on consciously moving my left leg. I'm sure I look awkward but who cares. I've got my music and my water and the views. And there's a long down hill towards the end to just glide and swerve - so fun. I don't care if I fall. And I don't care if I have fiery feet tonight. And I can eat whatevver I want today.

[Justsayyes]

Sounds like great fun Sardi g. I have to trust that my right foot that is partially numb does the right thing in supporting me while skating. The brain takes over and it is not a problem, but it does take some warm up time to get to that point.