Fatigue - Member Topic of the Month - April 2017

[Kimba22]

Your Member Topic for April is here!
You made suggestions and we listened!

Thanks to all who participated in March's Member Topic of the Month!

This month marks the first year anniversary of our Member Topic of the Month. Seems to have just flown by! We hope our members have found it helpful.

For the month of April. your topic will be about fatigue. Whether it's mental or physical, what methods are used to combat it? Which drugs or alternate/natural methods do you use that help?

Please join us in this important conversation on ways to alleviate fatigue. - Your thoughts and concerns on this topic are always welcomed.

Thank you all for your participation and stay tuned for more of your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here: http://www.msworld.org/forum/showthr...TH-suggestions!

[REG53]

The fatigue I have is leg fatigue. My gait it really bad and I can't walk very far until I have to sit down. Sometimes if I stand to long my legs start bending and I feel like I am going to fall.

I wish I could find something to help but as of now I have not.

[Seasha]

Same here REG - I have more muscle fatigue than anything else. When my legs quit, I quit! I have to sit and rest lots during the day.

Mental fatigue creeps in big time when I'm surrounded by people talking all at once. (The reason I had to quit my book group). Restaurants are also so bad for this. I can't seem to filter out all the noise and hear everything all at once, but can't even listen or concentrate what the person sitting next to me is saying. It wears me out! Don't know what can be done to help this.

My preference is a small group (2 or 3) sitting down in my or their living rooms eating snacks and only during late morning or early afternoons.

[REG53]

Seasha- Did you ever try Amprya? I tried it but it made my legs tingle so bad I couldn't stand it but lately I have been thinking about trying it again.

[Seasha]

I tried Ampyra a few years back, but it only helps a percentage of people using it (I forget the percentage) and I was one of the unlucky ones that it made no difference in my walking ability. I tried it for months in hoping something would happen, but nope. sigh~~

I hope it helps you this time around if you decide to try it again!

[veryroman]

I find swimming is about the only exercise I can tolerate any more. I walk 100 yards and I'm spent, but swimming is different. I try to swim 30 minutes per day. For whatever reason, I don't get the fatigue from swimming like other activities. It doesn't seem to help much with my endurance during the other activities, but it feels good to be active for a bit each day without the fatigue. I also have back problems, and it does help with that. If I don't swim regularly, I get muscle spasms in my back that can make my day really hard and hurt.

[Lady Diane]

I experience debilitating fatigue - every day, all day and night. It's okay. It has to be okay. From a super-active lifestyle (except for various days or months of feeling completely weak), my body did a complete 180.

One day, "it" became my constant experience. 24/7, 365 per year since 2005. Wasn't dx'd for 4 more years, 2009: PPMS.

I've learned to listen to my body, and to my fatigue. It has not been easy; is it ever, for any of us? I've slowed down even more past couple years. It is very strange, some days, to actually sleep 17 hours (sometimes 13 + 4 nap).

You know, I can't hate my life... that would be torture. To me, MS is just one of the risks of being human. Bodies are fallible. Spirit is not. It is our strong core that keeps us loving, and therefore, living.

I've quit all caffeine (not dark chocolate, though... . The only thing any stimulant, mild or prescription, does for me is cause anxiety attacks.

Regarding mental fatigue: I call that, "fading." Then it's time to really just go to bed. Cognition "fades" more and more. Also, I get an internal "buzz" in my brain that tells me I should stop whatever I'm doing and rest. Not fun at all but I've gotten used to that, too.

Blessed Be to All, Thank you.

[Jim-T]

Hello,

One of my first symptoms of MS was fatigue. My MS fatigue is both physical and mental.

Fatigue is the reason I stopped working at least five years before I planned. Of all the so-called invisible symptoms of MS fatigue seems to be the one that people have the most difficulty understanding. I think this is because every human being feels fatigued when they take a long run or have an exhausting day at work. Therefore, they think that they understand the fatigue of MS. But MS fatigue is entirely different than the fatigue I felt after a 13-mile run or after a 14-hour day at work. I believe, in the case of MS fatigue, it's a matter of not being able to get it until you get it.

The fatigue in MS is so debilitating I feel as if I can't raise my arms off my lap. In addition, the mental fatigue makes it extremely difficult to think even the simplest thoughts or follow a conversation. Although I frequently take a nap when I'm fatigued, I can't say that sleeping helps. Sometimes after sleeping 12 hours at night I'll awake feeling fatigued.

I realize that some of the medications I take for MS pain and for MS spasticity have side effects of drowsiness. I have tried to reduce my daily dose of Neurontin. Every time I reduce my daily dose of 1600 mg of Neurontin, the neuropathic pain in my low spine increases to such a point that I quickly return to my normal daily dose.

In addition, I take 60 mg of Baclofen tablets every day. Again, if I reduce that dosage the spasticity gets so severe that I feel I will pull a muscle.

I'm sure that both these medications contribute to my fatigue, but I don't believe that the medications are the cause of my fatigue.

I've tried Provigil. I didn't like the side effects. I think Trevor Gleason, who blogs about MS on the health channel, once termed Provigil his “loan shark” drug. In other words, Provigil can give you a wakeful day or two but afterwards you have to pay back the loan shark by being totally exhausted for a few days. That was my experience with Provigil.

So, I learned to live with MS fatigue and to endure its unpleasant consequences. I’ve also given up trying to explain it to others.

Life is good and it continues whether or not I'm fatigued.

Fatigue is the worst part of MS. If I could magically rid myself of only one MS symptom, I would choose fatigue, even over the lack of mobility that has me in a power wheelchair.

Best regards,
Jim

[Thinkimjob]

Twenty years in; I feel like one of those Japanese soldiers on islands in the Pacific still fighting WWII long after it was over.

Currently taking Gilenya - feel like death warmed up. I sleep 14 hours a day.

Wake up, get about three hours of the will to do anything, then it all crashes.

(Mind you, it was not much better all those years ago on Beta. We had peacocks back then, and I could sleep through their squawking.)

Fatigue - more like exhaustion. If the temperature changes either way, it gets me. Crowds, music, noise: all bad.

The big selling point for the new MS drugs was "no need for injections".

The side effects of these new drugs for we old timers are much worse than the fear of "shooting up". Given myself thousands of injections.

Other thing, I do believe once you've progressed to SPMS, the new drugs are not much use.

If you're newly diagnosed, get the strongest, best you can, as soon as you can. Probably Campath.(Not a doctor.)

Mind you, very proud of myself, dragged the garbage bin down to the kerb for roadside pick-up on my scooter; stood up and turned it in the right direction.

It's the little things...🙃

[LostInSeattle]

Same here REG - I have more muscle fatigue than anything else. When my legs quit, I quit! I have to sit and rest lots during the day.

Mental fatigue creeps in big time when I'm surrounded by people talking all at once. (The reason I had to quit my book group). Restaurants are also so bad for this. I can't seem to filter out all the noise and hear everything all at once, but can't even listen or concentrate what the person sitting next to me is saying. It wears me out! Don't know what can be done to help this.

My preference is a small group (2 or 3) sitting down in my or their living rooms eating snacks and only during late morning or early afternoons.[/QUOTE]

[LostInSeattle]

I too get very tired just walking with my walker from room to room. Not sure I will ever be able to do more but I'm very tired of living like this.
I feel so dependent on everyone but that's gotten old.
With summer coming I hate to think how I will ever deal with this. I have a high school graduation in a very warm side of our state. Not sure how I can do it.

[suenan]

MS fatigue is the worse symptom! I don't get it as often as I used to, but if I get overheated, whether by sunshine, temperatures, or physical movement (like cleaning house, cooking, shopping, etc.) fatigue kicks in before I know it! If I'm out by myself, I carry a cold bottle of water in my bag. During the summer I keep the sports cooling towel with me, too. That helps me to cool down in order to get home to my comfy couch or bed! Staying hydrated has been an awesome help, too.