Please describe your M.S. related fatigue

[VikingKitty]

To answer a couple of your questions -

Do you believe it is different than when "normal" people get fatigued?
Yes, I believe it is different. I know how I felt when I was tired before I had MS or before my MS was as bad as it is now. I could push through. I had a reserve of energy/adrenaline. Now it's as though if I try to push through the fatigue, the fatigue just takes over like a lead blanket. I just have to rest when I feel fatigued. Like I do at the moment. Sometimes I'm overtaken with anxiety when fatigued. I have had other people mention how "tired they are" and just keep going or yapping like a Cuisinart stuck on high - Me, I just sit down and get real quiet.

What is the typical response from others when you speak about fatigue? That can vary. I get tired of trying to explain it. I've mentioned it's more like how you're tired when you are sick than just being tired. It would be easier if they would "walk in a mile in my numb shoes" - then I wouldn't have to explain anything and they would understand perfectly.

[SNOOPY]

CVenatici, you have been given great information. Some medications list drowsiness and sleepiness as side effects. This can cause even more fatigue. I believe it’s important to research side effects of any medications you may be taking.

I have been diagnosed for a very long time. To this day I continue to encourage others to exercise. My exercise is mainly weight training, but I also use an Elliptical

Find anything that keeps you moving but please be careful to not overdo.

Take care

[pennstater]

You do need to listen to your body. If you are doing alot of chores and childcare, that can take your reserves. Have you tried gradual exercise to build up and tolerance?

I know when I am allowed to start walking again, it will be a 5 minute walk 1/x a day, then 2/x a day, then 3/x a day, then will try 10min 1/x a day, and 5 min 2/x a day until I can build up to 45 minutes 1/x a day without it depleting me. It will take months to get there though. Even then, the pace I go may vary day to day and week to week, depending on what else is requiring my energy.

Other thing - how is your sleep? Do you get a good restful night's sleep? It is really important.

Finally, you mentioned an anti- depressant. Is your depression well controlled? Does the medicine itself cause fatigue? You may want to review with your doctor.

Before attributing it all to MS fatigue, it is important to reduce/eliminate any
contributing factors such as stress, depression, anxiety, sleep disorders. All of which can result directly from MS. It can all also result secondarily from dealing with a chronic condition like MS and the challenges it causes to our daily life, work, and relationships.

I hope you are able to find some relief.

[KoKo]

If its 1 or 3 miles or even a long walk, it nevertheless eats away the reserves I would otherwise use for chores, children, etc.I can safely say that it doesn’t help my energy levels to exercise because i have tested it. That’s not to say it doesn’t make me feel good in other ways, but i have to tread lightly if i wish to get through the day.

Hello CVenatici!

Depending on the type of chores, you may be getting exercise without realizing it.

I posted this in February (General Questions and Answers Forum) - don't know if you have had a chance to read it, so I'll repost here.


Do it your way.

Exercise doesn’t have to mean going to the gym or going out for a run; it could be something as simple as housework or a walk.

Make it part of your daily routine.

You're more likely to stick with it if it’s easy. If you are in a wheelchair, while you are watching the TV you could use advert breaks to do some exercise: why not try some arm jogging while you are watching the meerkats? Or some balance work when you are putting the kettle on?

Short can be sweet!

Just a minute of arm jogging with a bit of gusto will improve your heart rate and get you breathing deeper. There is growing evidence to show that doing short bursts of exercise, rather than one great long burst, will improve fitness. For people with MS, when fatigue and heat can be a factor, exercising like this can really help.

Pace yourself.

Don’t overdo it, especially if starting to exercise after a break. Listen to your body when it tells you to stop. You will get to learn how much you can manage in one go without leaving yourself exhausted. And remember that other important activities like work, cooking or parenting, take up energy too. Leave yourself enough in the tank to get through the day.

Stay cool.

Everyone can feel lethargic in hot or humid weather, but with MS the effect is often exaggerated. Try using a fan or a cold water spray when exercising or have a cool bath before you start.

Remember to breathe!

It might sound obvious, but you’d be surprised by the number of people who hold their breath when they exercise.

Set up a nudge.

Have a trigger to remind you to exercise. Maybe when the adverts or weather come on the television, or while waiting for the kettle to boil. Set an alarm on your phone?

Top tips for staying active when you have MS | MS Trust

Build your own exercise routine | MS Trust

[CVenatici]

SNOOPY I don’t do 3 miles anymore, i am just still ABLE to run it is all i meant, which I’m fortunate for. I don’t really run as much as I would like in fact because i can’t muster the energy. I have in the past been in the position where running is habituated into my schedule. If its 1 or 3 miles or even a long walk, it nevertheless eats away the reserves I would otherwise use for chores, children, etc. I can safely say that it doesn’t help my energy levels to exercise because i have tested it. That’s not to say it doesn’t make me feel good in other ways, but i have to tread lightly if i wish to get through the day. I’m glad to hear there are those with contrary experiences though. Maybe my wiring is off :-P

[SNOOPY]

Hi CVenatici and welcome to MSWorld

T I can still manage up to 3-mile runs and would several times a week, but there is always a cost afterwards in the form of an exhaustion that can last days.

It's great you are able to run 3 miles. If you are "paying" for your 3 mile runs that is an indication you might be doing more than your MS will allow. Exercise is helpful for MS and some of the symptoms but overdoing it isn't helpful.


Were you doing 3 miles before your diagnosis? For some with MS there is a need to modify their exercise as to not overdo it. Sometimes we need to start out slow and build up, paying attention to how we feel afterwards. When I overdo do I tend to sleep quite a bit (1-2 days). When I don't overdo it I may need 30 minutes to an hour or two to recover. Another thing to try is taking a cool shower after exercising, this will bring down your core body temperature quicker.

Finding a balance between exercise and "life" can be a fine line, but is possible.

[CVenatici]

Thanks, for the suggestion. I’m familiar with such studies and do try to exercise as the research is encouraging for long-term prognosis of the disease. I can still manage up to 3-mile runs and would several times a week, but there is always a cost afterwards in the form of an exhaustion that can last days. I’ve been on meds including provigil, adderall, ritalin, n currently im on strattera which is less of a stimulant n more of an anti depressant if i recall correctly. So far nothing is very effective IF at all. I try to keep up with exercise as studies have shown it to have many other benefits for MSers. I still need naps throughout the day however and drag myself everywhere. I’m glad you have found fatigue improvements with exercise, it will undoubtedly have other benefits for you as well!

[pennstater]

The chronic fatigue is the most singularly pernicious MS related symptom I experience. I have lost much in my life because of my inability to ‘keep-up’ any longer.
....
I see no reprieve as a result of my MS diagnosis because my worst symptoms are invisible and thus get no meaningful recognition. Thus, I imagine life is similarly difficult with CFS, which so often gets dismissed by medicine as well as society.

Sorry for the ramble, its been particularly rough lately. Best health wishes to you all.

Truly sorry that MS has impacted your life. What have you tried for your fatigue? Is your neuro responsive to it?

It's a catch-22, but what helped me the most is exercise. I am in a period where I am limited due to an Achilles injury and with out the exercise, the fatigue has crept back into life, along with the symptoms that worsen with the fatigue. In the beginning, exercise was tough - how do you do that when so fatigued? I thought my neuro was nuts when he showed me some studies related to MS fatigue and exercise. I gave it a shot, started at 5 minutes, then gradually built up to a routine. I can't wait until they let me do more again.

And definitely true on added sugar. That makes a huge difference too.

[CVenatici]

The chronic fatigue is the most singularly pernicious MS related symptom I experience. I have lost much in my life because of my inability to ‘keep-up’ any longer. This includes my higher education track (n thus my would-be degree) as well as my spouse, who only ever expressed resentment toward me for my disease and shortcomings. My job prospects are rubbish now despite my education. All of this might seem less insurmountable if i was alone, but i do have children that depend on me and I don’t know how to pull something from nothing in order to succeed again. Fatigue has driven a stake through me and on top of it all there is only loss where I would hope some understanding might be. I feel especially for those with chronic fatigue syndrome with no medically perceptible underlying cause. I see no reprieve as a result of my MS diagnosis because my worst symptoms are invisible and thus get no meaningful recognition. Thus, I imagine life is similarly difficult with CFS, which so often gets dismissed by medicine as well as society.

Sorry for the ramble, its been particularly rough lately. Best health wishes to you all.

[pennstater]

I believe fully that exercise helps but my workload prevents me from exercising and after hearing from my neurologist that I am shortening my life by continuing to work, I am also looking at retiring soon and applying for SSDI.

Glad to hear you have the support of your neuro whenever you are ready to file!

[pennstater]

I was only taking 100 mg of provigil. Bumping it up to 200 did the trick. At least for now. I’m looking at retirement now. I think I might enjoy that a bit more than suffering through work. Since I have physical fatigue and cognitive fatigue.

Glad to hear that the fatigue is manageable now. As for retirement, only you know the right time. But I can tell you, as much as I hated to stop working, I have a much better quality of life and can manage fatigue so much better. Good luck to you.

[pennstater]

i skip it since there is no energy left.

That is a situation many find ourselves in - a balancing act - determining what must get done, what would be nice to get done, and what can wait. I know I would be exhausted if on my feet almost 8 hours a day!

[barb_jones]

Well I’ve had ms for almost 20 yrs now i lost track I’m on my feet 8 hrs a day and some days i feel like simple things are so hard to do i just collapse making dinner is a effort even shower i skip it since there is no energy left. It defending is horrible so when that happens i just go to sleep nothing else works.

[MS TOO]

Crazyguy, glad to hear increasing the provigil is helping with your fatigue! I feel like working from home has made my fatigue worse as I am not walking or moving around much at all, I am stuck at my desk for hours. I believe fully that exercise helps but my workload prevents me from exercising and after hearing from my neurologist that I am shortening my life by continuing to work, I am also looking at retiring soon and applying for SSDI. I hope all goes well on your retirement journey!

[Crazyguy]

I was only taking 100 mg of provigil. Bumping it up to 200 did the trick. At least for now. I’m looking at retirement now. I think I might enjoy that a bit more than suffering through work. Since I have physical fatigue and cognitive fatigue.