They tell us to exercise.

[marti]

I'd like to know how we're supposed to get exercise when we are in pain every day and are totally exhausted from the minute we wake up until we try to go back to sleep.

I've joined the YMCA a few times only to back out because I just can't force myself to move. Water aerobics really wore me out. I had great hopes for that one.

Physical therapy is tiring and only helped me during the time I was in session with the therapist. Once I left I was in as much pain as I was before. I've tried dvd tapes, exercises sitting down, laying in bed etc. I can only do a few repetitions which is useless.

So, how do you guys fill this prescription for exercise??

[4boysmom]

I walk as much as I can, even if hurting. I'm also doing Aqua Zumba. I have a hot tub so that is a way to stop the hurt, even if it only lasts as long as I am in the hot water. I just try not to focus on the pain.

[Thinkimjob]

Not too well, Marti, I'm afraid. I probably could do more, but daily activities seem to be more than enough exercise.

Just going shopping (only one shop a day) is exercise enough for me. By the time I stagger from car to counter and back again, I am done. No browsing. So much worse if it's hot, or late in the afternoon.

And laundry! I want one of those all-in-one washer/driers, preferably in the bathroom, because lumping it out to the washing machine, and hanging it out on the line is a wobbly-legged nightmare.

I actually pant some days, like I've run a hundred metres faster than Usain Bolt. Then, of course, he doesn't pant at all.

[bubblebabe]

Im still trying to figure that one out myself

[Jules A]

Doing a formal exercise regimen does hurt in the beginning so my thought would be that if you used to be a runner for example and now can't tolerate even a light work out sadly it would make sense that MS just isn't going to allow you to push yourself to work out anymore.

On the other hand for those that were not in shape before MS I often wonder if they just aren't used to the uncomfortable feeling of fatigue and muscle exhaustion that comes from starting a new regimen, MS or not. I don't know its just something I have thought about.

I am blessed to be able to continue exercising, for now anyway.

[misslux]

A few repitions is not useless. Exercise can be cumulative so you can do 5 minute sessions a few times a day. The big thing is getting your heart rate up so just flail your arms around while seated for a few minutes and do that a couple times a day to start.

[whatismyname]

I have major problems w/ exercising. Everyone tells me I should do it. Doctors, physical therapists, random people who act like they know stuff, etc. I WANT to. I used to work out before this disease. But I just can't see the point, now.

Exactly why am I supposed to exhaust myself and feel weak all day? To build up my endurance? Endurance to do what? I have exercised in the past only to go through a random flare and slip FAR down the strength scale and be much more weak. Working out didn't stop that flare. I am pretty anti feeling like poop, and that is what exercise makes me feel like.

I give up. Stretching yes. Exercise, no. /end rant

[bubblebabe]

Misslux you just had me cracking up picturing me flailing my arms around sitting in a chair while my family looks at me like I've lost my ever loving mind!

Hehe, thanks for getting my heart rate up and for the chuckle, I really needed it today!!!

[misslux]

bubblebabe, glad I could give you a chuckle!

I know it looks so silly but it still counts as cardio! To be honest, I can't do it in front of my SO because I look so silly!

[Mermaid52490]

And we can....

For marti and whatismyname:

I HEAR you, especially the "what is the point?' and "why bother?". I was an extreme fitness athlete before my RX in June 2011. I watched my strength and hard-earned muscle mass melt away as I struggled to balance medications, side effects, new symptoms, and the ever-present depression and anxiety. I cried and cried and cried...

February 2013 - I said "enough".... Fatigue had been creeping up on me, sucking the life out of me, including the motivation to move faster than a shuffle. I realized I planned my day so I only had to walk up and down my stairs once!!

I went to my neurologist and said - this has to end. I had a mental and physical block against any exercise. I suspect you may be experiencing the same. If the body isn't willing and it isn't capable, exercise is out of the question.

I switched the Tysabri, the most aggressive medication and the only one proven to address fatigue. I increased my Nuvigil dose, I increased my Wellbutrin, and I started on Adderall (Rydalin gave me a headache).

My body still isn't capable, but now it is willing. I began with short walks by the water, on flat ground. I can't "walk around the neighborhood" because I trip over curbs and driveway undulations in the pavement. Then I walked a little faster and a little farther.

Now - I can actually run a mile or two. I have to carry cold water with me. I wear a heart monitor because after a certain threshold, I get vertigo, half way through my daily walk, I have a snack (gluten-free, high protein). I listen to my body. Some days - I just don't have it... but I go through the routine. Today, I had massive nerve pain, but I geared up, got my water and snack ready, drove to the beach, and sat with a blanket around me to catch up on my reading.

The greatest satisfaction is to "get in the game".... what you do, how you do it, doesn't matter... neither does the answer to "why am I doing this?". Claim the parts of your body that work, today, in the moment... that's it. That's all we have.

Some thoughts I rely on:
1. aerobic exercise of any kind - is the only way to force the body to repair myelin damage, and to build new neural pathways. (check research on extreme fitness, aging, Alzheimers and exercise)

2. every time someone passes me while I am running what I feel like is a full-court sprint, I think "ha! they don't even know I have MS and I'm the best because I haven't tripped yet, and 2 months ago I could barely move!"

3. I keep a sense of humor. I walk with a friend who can "power walk" faster than I can jog. She can swing her arms and legs and create momentum. I can't! I can't even get my arms and legs to move in synch. She helps me practise and says "you aren't moving your left arm! its just hanging there!" so I remember to concentrate on sending the signals to my muscles.

Net: treat the underlying depression and fatigue first. Exercise comes naturally after that. (BTW, we have no choice with the depression. Its not situational, its demylination. MS attacks nerves in the limbic system which control depression and anxiety. Medication and therapy are the only way to move through it).

Something is stronger than MS. Whether its your will, or your faith, or your anger, it deserves the chance to run circles around MS and show it who is boss!

[tellnhelen]

Thanks Marti and Think. I laughed until I cried. It was good exercise for today. Will try again tomorrow

[SNOOPY]

Something is stronger than MS. Whether its your will, or your faith, or your anger, it deserves the chance to run circles around MS and show it who is boss!

When diagnosed my neuro told me the best thing I could do is walk. I thought he was crazy. He saw the look on my face and told me "I know, it doesn't make sense but it will help you."

I couldn't even hardly walk, exhausted, in extreme pain with bilateral leg weakness and shuffling/sliding both feet.

I did what he told me. Day after day month after month. In the beginning all I could do was collapse on the couch, in extreme fatigue and cry.

In time I did see improvement and I have been exercising ever since. With each relapse I experienced the same thing and would keep walking regardless. Except I found I would curse my neuro under my breath has I was "trying" to walk once again

What I have found: anger, at this disease, becomes my underlying motivation to keep trying, to keep exercising, to keep going.

What's the point? Self satisfaction and a sense of "doing something" to fight this disease.

There has been clinical trials done which are indicating exercise can slow progression.

[Koshtoo]

I attended a luncheon recently where a physical therapist who specializes in MS spoke. She said researchers are begining to find evidence that some MS symptoms may be more the result of deconditioning/disuse, than directly from the disease process itself. Symptoms like fatigue, cognition problems, depression and constipation are common in people with little physical activity. Even just a week of bed rest can cause signficant loss of endurance and strength.

She provided ideas for exercise. For patients on bed rest, even just sitting up and holding a note (like saying the letter "a" and holding it as long as possible) works the trunk muscles and improves cardiovascular strength.

If fatigue is an issue, don't do any exercise to exhaustion. Three bouts of 10 minutes of exercise, with rests between, where just as effective as 30 minutes of straight exercise, and patients reported less fatigue and pain at the end of the session. These times are just an example. If you can only do 5 minutes before tiring, do that.

Strength training is also extremely good for the brain. When I couldn't do much cardio, I focused on weights and that helped me build up muscles and improve my endurance. Weights are not necessary. Body weight exercises or exercise bands will also work.

[lstrl]

When I could barely walk, I thought exercise was practically impossible. Then my mom's personal trainer showed me that I could do something. She had me doing some weight training while sitting in a chair or holding on to it. Just that one session made me realize that I could still exercise. I also started walking on my treadmill. I had to hang on to the handles and usually couldn't make it past 10 minutes (sometimes less than that), but I still did what I could.

I started doing that in February. Now I do 3 Zumba classes a week, and most of the time, I don't even need to take a break during the class anymore. I still can't walk very far, but for some reason, my body lets me dance for that hour. When I'm having a bad day, that hour provides me such a release and turns my day around because I love it so much. I also do a couple of pool classes a week. My body can handle the pool better, unless I really push myself hard. Then my left ankle doesn't want to move (and I thought that foot drop I had was gone. I guess I was wrong).

I really had a hard time starting up my routine. On the days that I was weaker, I just didn't feel like getting up and doing anything, but as I've gotten stronger over the months, now I don't know what I'd do without my daily scheduled exercise. I look forward to it, and it makes me feel so great. I'm at the point now that people can't even tell anything is wrong with me. I've told a couple people at the gym about my MS, and they were shocked. They think I look just as normal as everyone else.

I imagine some of my strength is a result of recovering from my flare, but I really believe a lot of it is because I consistently exercise. Every time my personal trainer sees me, she can't believe how well I'm doing after she first saw me in February and I could barely walk. She has me doing so many exercises that I never thought were possible. As long as my body will let me do it, I'm going to stick with it. MS has taken a lot away from me, but I'm going to take back whatever I can as long as I can.

[Carole A.]

Another vote to do whatever you can!
After a fall last year in which I broke my arm, I stopped exercising. As the year progressed, I grew weaker and weaker. Even after my arm healed, my walking was so difficult, and I was completely depressed. My neuro told me that weakness comes quickly, and to start with just a few minutes at a time. Earlier this year we bought a stationary bicycle. My walking is so much better! After just 10 minutes a day, 4 days a week, I felt better. Believe me, I had to work up to the 10 minutes! On non-bike days, I do yoga stretching and weights as well. I am in a much better place than I was last year at this time. I know how hard it seems. Just try something, you will be surprised.