as far as i know there is no benefit from exercise for narcolepsy, beyond the benefits that a person without narcolepsy has also.

I have been reading from others and articles that exercise helps cuz it releases endorphins and all the feel good chemicals so it could help that way but also I have been told from others that they are completely exhausted after exercising for 30 min. of not even strenuous exercise and have to go lay down then. So depending on your body's reaction, it could go either way but I would not stop my meds. and go to just exercise. While I can appreciate your husband's theory, he cannot ever fully understand what you go thru so he may be trying to help but you need to follow what your doctor's say on this one. Politely tell him, I appreciate your concern and wanting to help fix this for me, but I have to figure this out on my own and with my doctors. He might get mad but stick to your guns. My husband didn't get it at first either that if I talked to him about it, I wasn't asking him to fix it or come up with suggested solution, just asking him to listen. It sounds to me like you are really active already so I would think you are already feeling any effect you would be getting by doing more. Don't know if that helps or not. Hang in there and talk to your doctors. They can tell you what's best.

from what i understand endorphins are only a short term cure,
they wear off quite quickly, like a rush of addrenaline.

It does help and should be used along with meds, not instead. I coped for years with exercise, naps, healthy eating, but never realized just how impaired I was until I started taking Provigil. A person without this disorder simply has no way of understanding it. The closest they can come to it is if they were deprived of sleep for three days and then expected to perform their normal routine. He can't "fix" you, he can be loving and supportive. You will have to pay attention to what you need, and this will change from time to time. I do marathons and half marathons and know from my own experience that being active feels better. Narcolepsy is not just a sleep disorder! It affects your metabolic processes, too. Keep your life as active and full as you can, enjoy each day for what it brings into your life. That is all any of us can do. Narcolepsy is not curable, only treatable. You will have to learn what makes you feel better, and do it. The Narcolepsy Network website has alot of good info. There is no magic trick, but life is still good!

I exercise myself, I take martial arts, teach self defense with my husband, and walk our dog, walk to the grocery store, where ever and when ever I can..I take my medicine.. personally I think your husband should stay up for 3 days straight. Then ask him if he should exercise and see what he thinks. since narcolepsy is the equivalent of a person staying up for three days and then trying to cope with everyday life......

I've been told the same thing. That if I 'can just get out and get active, oh you'll feel so much better'. My constant denials of 'I have no getup and go to even do that, no matter that I'd love to' sort of fall by the wayside.

While I think his intentions are good, I'm with the majority here who say exercise is great in addition to your meds, but not a great stand-alone alternative.

maybe you don't have narcolepsy. . . someone with true N could not do all that. Most times the person gets worse with exercise.

i dont mean to sound defeated, but i cant do much exercise i am lucky if i can clean the house without feeling like i have run a marathon. |i can feel my energy leaving my body just with walking it drives me mad. just having slow walk around town shopping does me. I am also quite weak to what i used to be a couple of years ago gggrrr any ideas. vonny x x x

Husbands-Spouses-Partners that could be a whole other discussion. We aren't the only ones that go through denial, anger, bargining, etc. I have been working hard to both help my friends and family undersatnd this is a disease...brain cells are damaged or dead...on the other hand I don't want them to see me as disabled either! Your dear husband- like most males-just wants to be in control of things and fix your narcolespy-not only do we feel helpless or loved ones do too. I keep comng back to the approach of ...I can't cure the narcolepsy-dead is dead...but I can do whatever I can to keep the rest of me as healthy as I can. I do plan to increase my exercise...(notice I said plan to-soon, really-maybe I should write it as a goal to keep me honest )...not to cure the narcolespy but to keep the rest of me healthy!

mariyln, its a pity i didnt live near you, i would do some exercise with you, i need motivating, and whats better than exercising with someone that understands it all. vonny x

The best way to exercise is to watch others exercise

Sounds to me like you already get plenty of exercise. Good grief, you manage all this with the constant tiredness.

Exercise does make you feel better for a while, providing you get up in the morning not feeling like you just ran a marathon. I would love to have the energy to exercise. Just being awake and breathing feels like a struggle some days. The general population think it's laziness and that if you get off your rear and walk or run that it will be of benefit. What they don't know is that it is possible to fall asleep whilst exercising. I know, it's happened to me, many times.

Tell your husband to only sleep two hours a night for three days and see whether it still seems like such a good idea. My guess is that he's going to be begging like a dog to be allowed to sleep.

I think any doc is going to say exercise is beneficial because it's good to keep your heart healthy, but as far as I know there's no medical evidence to prove that exercise helps alleviate the symptoms of narcolepsy. If there was, sleep docs would be telling us that that's the way to go.

I think we should start a permanent thread on here. All spouses, relatives, friends, doctors, givers of "good" advice, or anyone related to a person with narcolepsy should experience sleep deprivation first hand. So they know what feeling exhausted "really" feels like.

Son has the problem of N and C .I do have RA and one of the sides is tired and lots of pain.Small aches daily here and there not as bad now as then. The DAD can drink an energy drink late at night and still go to bed at 9.:00 and sleeps like a log..Like one thats getting sawed. Yes exercise is good as long as don't over do it and know limits.

I try to fit excercise in with my housework. I'm on disability and I usually have about 1-2 semi awake days that I can get things done around the house. I started doing the dishwashing aerobics a couple months ago. I just walk in place or do leg bends and step from side to side. The dishes get done faster it seems and I break an even bigger sweat. I also force myself to walk around my apartment once with each load of laundry that comes out of the dryer. It sounds like such a little thing, but atleast my blood gets flowing and I get chores accomplished. It seems such a fine line between not doing enough and doing way too much.
The one thing that really gets me down and upset is when my family, friends or even bf throw this back in my face and say "If you can do all that house work, why can't you get out of the house and do more things like work and go out with friends?"
I like the idea of having all my fam and friends stay up for 3 days and then see how they feel about their opinions of us.

I've been forcing myself into 30 to 45 minutes daily on the treadmill.

The exercise has helped with my back pain. I didn't realize how badly the pain was affecting me. During the day, it used to deprive me of energy. I think I'm sleeping better at night too, not waking up with back pain.

So although the pain isn't gone, I'd say it's reduced by at least 50%. I'm noticeably less tired during the day, but the difference isn't what I would consider "huge".