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AWESOMECHELZ's Photo AWESOMECHELZ SparkPoints: (29,164)
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10/6/13 5:48 P

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The pacing can be very difficult if those around you don't understand why you are pacing or taking breaks. I am 50 now and have had MS for 28 years but when I was younger, I had a hard time taking the breaks and ignoring ignorant and non-supportive comments. Now I do okay not only taking the breaks and pacing but, hopefully, educating others. So many people, for different reasons, need to take breaks and in a fast moving society, the support isn't there many times to do so. Thanks for sharing. emoticon emoticon

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RAFFERM Posts: 482
10/6/13 6:55 A

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For me it just takes time! I plan more time to shop the mall and half way through I get a bottle of water and sit and people watch. At work I stop every hour or so stretch and clear my brain. Somedays the more I try the worse it gets and so I just try and pace myself to get things accomplished.

AWESOMECHELZ's Photo AWESOMECHELZ SparkPoints: (29,164)
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10/5/13 6:41 P

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I also have ADHD and for years, took things like Ritalin and so on, and those meds were like a light in darkness!! I just felt great, could concentrate and do so much more. Now that I am 50, I can't take those meds anymore because my heart doesn't like them so I would be curious to see how Modafinil compares to Ritalin for me. Ritalin is speed but at times, it put me to sleep because speed affects ADHD people differently chemically.

Thanks for sharing! emoticon

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MRSTEJANO's Photo MRSTEJANO Posts: 4,545
10/5/13 11:48 A

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Yes it is a small world! I just love baking the Modafinil. I've had MS (known about it) for half my life ...... 25 years and counting, and this is the first thing that gives me clarity of mind, along with some energy. I know it has been used to people like truckers to keep them alert on the road. My dh is a trucker, and he teases me that I'm taking speed! It's not really speed at all. It just somehow lets me think clearly, be able to plan my top 5 things I need to do that day, and get them done plus! I hope your neuro will agree and give you a script for it.

Becky
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AWESOMECHELZ's Photo AWESOMECHELZ SparkPoints: (29,164)
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10/4/13 7:46 P

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Hi Becky! I used to live in Pinellas county (Largo)! What a small world. emoticon And thanks so much for this information! I wrote it down to discuss with my doctor the next time I see him. emoticon

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MRSTEJANO's Photo MRSTEJANO Posts: 4,545
10/4/13 8:02 A

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Hello all. Just realized I hadn't shared this. My doc (neuro) has me on Modafinil 200MG Tab PAR. As soon as I started taking it, my mind cleared, I had more energy than I'd had in ages. Just one pill in the a.m. is what I take. My co-pay is just $15. It lets me feel like I used to feel.

Becky
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AWESOMECHELZ's Photo AWESOMECHELZ SparkPoints: (29,164)
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11/25/12 12:01 P

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I am having a lot of problems with that now and what is helping me is giving myself breaks when I can't do as much as I want to/need to; being kind to myself. For me, adding guilt on top of the miserable fatigue isn't worth it.
Chelsea emoticon

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MRSTEJANO's Photo MRSTEJANO Posts: 4,545
11/18/12 10:26 P

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Hello all. For me, I've had MS about 25 years, and here's what helps me:
-I find that eating fresh spinach gives me more energy. I have a great recipe for spinich salad.
-I pace myself, keep cool. I got a cooling vest free of charge from the MS Foundation, along with a had, neck collar. It really helps me because getting overheated is the worst for energy.
-Don't push yourself past a certain level. Find a cool way to exercise that you really like. I love swimming, and when I'm in the water, I don't feel my challenges, so I try to swim as much as possible.

I hope this helps some.

Becky
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RAFFERM Posts: 482
10/14/12 8:16 A

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Hey there--
I find that giving myself time each day helps me get through. Because of my job, I drive from one end of our county to the other for site visits. i make sure I ahve a bottle of water with me and I use the time to quiet my mind and focus. It seems to give me the :thinking power" I need for the next couple of hours.

MZMEGGS Posts: 51
4/23/12 5:28 A

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I didn't know you could do that. Thanks for the suggestion. I'll definitely look into it! emoticon

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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (103,189)
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4/22/12 5:17 P

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How about going through the M.S. Foundation for some help?

"A reminder to walk comes from one heart to help another." Me
MZMEGGS Posts: 51
3/9/12 7:48 P

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So much helpful advice here. I don't have the insurance or the money to see a neurologist so I'm doing this thing med-free and it helps me SOOOO much to be able to come here and see how you are all managing your lifestyles. So... huge thanks to all of you for sharing. I'm fortunate enough to be able to take naps and rest when my body tells me I need to, but I have noticed in the last five days that I haven't had to be _as_ still - and I'm convinced it's because of the light exercise (I've been walking one mile per day and I've been toning for 30 minutes every other day) and the better food choices I've been making. I even went and got my nails done today just to take a moment to treat myself and to breathe. Sometimes something as small as doing something nice for myself seems to re-energize me a bit.

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MELLY3183's Photo MELLY3183 Posts: 1,914
3/5/12 11:59 A

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Hi BOLLINGER25

I noticed that when I start to feel icky and tired I need to drink some water. That coupled with some physical activity helps my sleeping @ night and the fatigue during the day. I still drink my coffee in the a.m. but I aim for that 8 cups of water/day. I do notice it makes a great difference.

Good luck!

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ELEYNE's Photo ELEYNE Posts: 333
2/29/12 10:06 A

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I'm on Ampyra now and it makes a HUGE difference. I was off of it for a couple of weeks (financial issues) and I was miserable. Brain fog, more physical fatigue, less effective workouts. I'm glad my neuro recommended this, esp since my drug plan wouldn't cover Nuvigil.

ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,142
2/29/12 9:48 A

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Love Provigil...really helps and going to the gym too....but don't catch a cold...that's what I have...then just go to bed and hide under the covers! emoticon

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (103,189)
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2/29/12 5:10 A

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Multiple Sclerosis Foundation: HOW TO CONSERVE ENERGY WHEN YOU HAVE M.S.
If you have multiple sclerosis (MS), you can use less energy by positioning objects and materials so they're within easy reach. Store the objects you use most often at heights between shoulders and knees to minimize reaching and bending. Taking care in how you position yourself in relation to what you are doing can also reduce energy expenditure. Use the support of furniture (for example, arm rests) when you can and make sure you face the task directly. This uses less energy than working from a strained or awkward position. You can also sit on a chair or stool instead of standing to do some tasks. This includes tasks that are fairly quick, like brushing your teeth in the morning, to those that take longer, such as washing the dishes. Put chairs or stools in those locations ahead of time to make it more likely that you will use them.

Set up activity stations in your home to save steps and energy by putting the objects and materials used for a task together in one place. Activity stations can be for any routine task -- getting dressed, making sandwiches, leaving the house, or washing the car. Start with something you do often. Get help as needed to move everything you use for that task to the place where it makes sense to do the bulk of the work. Then identify the things in that area that are not needed. Move the unneeded objects to where they'll be used and either toss or give away the things you don't use on a regular basis. This approach can reduce not just your physical energy expenditure, but also how much thinking is needed and emotional stress.

Slide objects along countertops instead of lifting and carrying or use a utility cart to transport them. Or, save steps by using a transitional "staging area" when moving multiple items from one location to another, for example, when unloading the dishwasher or setting the table. Replace heavier objects and tools with ones that are more lightweight. Use tools and devices that increase leverage, such as a long-handled jar opener, or increase friction, such as a rubber gripper. Use electrical appliances and power tools stored within easy reach for both big and small jobs.
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PRINCESSNIBBLES's Photo PRINCESSNIBBLES Posts: 653
11/7/10 11:52 P

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Oh, the dreaded fatigue. I have used Provigil and Nuvigil in the past (samples from the neuro), and I loved it the first day or two, then emoticon . The Nuvigil was better of the two.

If you have to go to a job and be perky, it's tough. If not, when you feel "tired", go lie down, your body is telling you to do so. emoticon

Just keep experimenting with what works for you and take care.

Edited by: PRINCESSNIBBLES at: 11/7/2010 (23:53)
*Kim* in Nevada
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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,142
11/3/10 8:19 P

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That's positive...don't let this emoticon get you down! It does get better... emoticon

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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BOLLINGER25's Photo BOLLINGER25 Posts: 359
11/3/10 8:07 P

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Thank you for all of the suggestions. I have several different things to try now, and I feel more hopeful. emoticon

Edited by: BOLLINGER25 at: 11/3/2010 (20:08)
Sometimes change just means it's time for a new normal.
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,142
11/3/10 6:39 P

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Yup! There's the "P" drug...provigil...I rather take caffeine and my doctor is very happy with that. When my body says sleep...I do it. Exercise is great for the mind/body thing and lots of endorphins are produced. Some drugs do cause drowsiness. My Nadolol is a beta blocker and you can get tired from that drug and it reduces you libido too...Geesh on that one! I take my caffeine via a pill because the caffeine in coke doesn't affect me at all and coffee makes me too jittery...go figure...basically you go with the flow...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ELEYNE's Photo ELEYNE Posts: 333
11/3/10 9:39 A

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Hi, Bollinger.

Ah,, yes, that Evil MS Fatigue. emoticon

We all do whatever we can to deal with it. Yesterday, I drank three pots of coffee. STILL didn't help. When I was in school, at the same time I was dx'd, I guzzled Cokes.

I've taken Provigil/Nuvigil for that fatigue but it's prescribed off-label and my insurance co won't approve it for MS fatigue. It's also expensive.

One thing I 'discovered' is that some of the other meds I was taking, primarily Baclofen for spasticity, have soporific side-affects. You might check out your other meds and see if they might be causing drowziness. Timing WHEN you take them might help.

Physical activity can also benefit. I find it's energizing, most of the time. So is some sunshine (for me). And once in a while, that NAP is just the ticket. I make it SHORT, so I don't have to deal with post-nap grogginess.

I like energetic music and positive people around, too. They help me keep my mind off the fatiguing fatigue.

emoticon

Good luck!



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11/2/10 7:34 P

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I know this doesn't sound right, but when I started with SP and exercised consistently, my fatigue actually got much better. I still have to be careful not to overdo it on one day, (like on Saturday, I ran a 5K, took our puppy to puppy training, worked on building the new garage & then went to a housewarming party that night. TOO MUCH!), but for the most part, I'm WAAAAAAY better than I was 2 years ago!!!

~~~ Lynn ~~~ Pittsburgh, PA


The Secret of Health for both mind & body is not to mourn for the past, worry about the future, or not to anticipate trouble, but to live in the present moment wisely & earnestly. ~ The Buddha

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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,142
11/2/10 7:17 P

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I use tylenol with caffiene for the boost...my neurologist approves...there is a drug out there that is given for serious fatigue, but I can't remember right now because of the stupid MS? so maybe someone in our group can remember for me....starts with a "P"...and if your body wants you to lay down and rest do it...and you will feel better...if you fight it ...it only gets worse... emoticon

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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BOLLINGER25's Photo BOLLINGER25 Posts: 359
11/2/10 6:49 P

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I was diagnosed about a year ago. For a few months, I took low dose naltrexone to help with the fatigue. It helped with the fatigue but made my head feel like I was constantly in a fog. I stopped taking the naltrexone and I feel more like myself, but I get tired so quickly. Does anyone have any tips/suggestions for feeling less fatigued (or at least coping with it)?

Sometimes change just means it's time for a new normal.
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