Symptom of the Week 05/22-05/29. . .Fatigue
 

I was thinking, I know a very bad thing to do :D, that it would be great to have a symptom thread. A symptom thread can get kind of long and for a newbie to the site, it could be a little overwhelming to read through hundreds of posts. Narrowing it down to a week may be a little easier.

The idea would be to list the symptom in the thread title and everyone can post their experience with that symptom, what relieves it for them, and vent about that symptoms. You all know I have a lot to say about the MS vise grip (a.k.a MS hug).:eek::D

Since fatigue is one of the most common symptoms and one that causes many MSers to leave the work force and can greatly affect our activities of daily living, I figured that would be a good place to start. So....Discuss your fatigue.

I get both mental fatigue and physical fatigue.

Mental fatigue generally happens when there is too much going on around me and I can't absorb and process it all. It can be so frustrating as I love to be around people and love the hustle and bustle of being out and about, but it is so exhausting. I no longer am able to go to many places and events due to such. I now go to quieter gatherings, such as family dinners, friends houses, etc.

I also experience physical fatigue. My legs wear out so quickly. They start to slow down and feel heavy and then I am just dragging. There is nothing I can do but stop and sit down or lay down for an hour or so. My arms get fatigued just brushing my hair sometimes. (Sheesh, I really need to just get it cut shorter.:)) Simple tasks can sometimes become a major task for me. I can get fatigued just making a sandwich for lunch. :rolleyes:

I have to nap or lay down for about an hour or so every day. It's my only way to make it through the whole day without becoming a blob on the couch. I usually feel refreshed afterward and can carry on with my days activities.

I do not take any medication to help with fatigue. I did try Provigil once and it didn't work for me and my insurance doesn't cover it. I have not tried anything since. Naps and periods of rest is what helps me the most.

t
 

I used to suffer debilitating MS fatigue. (Mainly it was during an exacerbation,
but sometimes between flares too. When I stopped taking the MS modulating
drugs, and started LND(Low Dose Naltrexone), my debilitating mental and
physical fatigue stopped. I still get extra tired, if and when I do to much.
Doing too much, with MS, is a lot less than what "normal" peeps can do.

I do not take any "upper" drugs, as they make my heart go pitty pat!!:)

I think that fatigue was probably my first symptom of MS. I was more tired than most people for years. I usually manged it by resting for an hour or so after teaching and going to bed fairly early.

Since retiring it isn't as bad, but I do spend more time in bed than before. I too find that I need an hour or so just to lie down in the afternoon and rest.

I am sure that one of my problems is that I do not get natural sleep. I take ambien CR and still cannot sleep much some nights. I am tired but not sleepy. I would love to fall asleep naturally but it just does not happen.

I was just in Chicago and walking on concrete on long city blocks is hard. I could only make it about two blocks before my leg and back began to really hurt. My leg also gets heavier and heavier with each step. Once I sit down the pain subsides. I find shopping with a shopping cart a lot less painful.

I took something for about two weeks for fatigue but it only made me constipated. It was the antiviral med. I can't remember the name.:o A neurologist once gave me free samples of provigil, but I was afraid to try it.

Amantadine? It didn't do anything for me. I had no problems with Provigil, but it wasn't much help either.

This is a great idea. I used to have both mental and physical fatigue but since my 60 pound weight loss I really don't have the physical fatigue. But I will still rent a scooter if I go to our local big amusement park. Long walks, heat, hills. Yep, I'll spend the money on a scooter.

The mental fatigue is something different. To much stimuli is the worse thing. My husband goes Karaoking a lot. And the sound systems in the bars are so loud, it's kind of dark and it just wears me out completely. I don't like surround systems in a movie theatre.

Symptom of the week: Fatigue
 

In my 20 years with an MS dx, I have never dealt with what I'd call fatigue. But I'm PP, and very often Primary Progressive just doesn't mimic RR or SP symptoms.

I've had long, often eventually permanent, tiredness or weakness in my extremeties in the months prior to the eventual loss of the use of them. But I never felt overall fatigued with the necessity to actually go to bed or to sleep.

I'd love to hear from other PP folks to learn of their experiences regarding fatigue. For you others, how bad has your fatigue affected your daily activities?

MsBluIs

Great idea, Trish...

Fatigue...I've experienced it for many years. It was my major sx with fibromyalgia (wonder if that was early MS fatigue?)

I've not been experiencing fatigue as much as in the past...don't know why either. I hate this sx...it's so debilitating...

Sally - I've LDN can help with the fatigue we experience. I'm glad that it helped you.

Barb & Doydie - I have found that using the store scooters to be so helpful. My body doesn't give out within 10 minutes of shopping. I can now complete the entire shopping trip. If they don't have a scooter, using the cart is helpful. Most of the places I go to have a scooter though.

Msbluis - For me, the fatigue can make me stop in my tracks. It doesn't matter where I am, when my body says stop it means stop or I'll make you stop. It's like moving along happily and then hitting a brick wall. Then I have to spend some time resting to recup. I can longer do the things I used to do. A shower alone can be so tiring. There have been times that I've showered and have to rest with my towel on until I have the energy to finish getting dressed. It's not all the time that that happens but sometimes. Like I mentioned, brushing my hair can be tiring too. Making meals is a chore. Since I am only cooking for myself, it makes it much easier and I make quick meals, ones that don't require a lot of energy.

Yes! Yes! Yes! The shower is a big one sometimes. I have been much better since I have been on Tysabri, but there have been many, many times when I have wrapped up in a towel and had to lay down.

Fatigue was the symptom that sent me to the doctor in the first place, figuring I was just low on something.

There is just no word to describe the feeling. It's more/different than tired or sleepy, or even exhausted. Even the word "fatigue" somehow conveys the idea that it's the RESULT of something--hard work, no sleep, a bout with the flu, etc. MS fatigue is it's own bird--most of the time, there IS no such cause. You just hit the wall. Or wake up in the morning already flat-faced against the wall.

When you add body fatigue to brain fatigue, it something bigger than the sum of its parts. I'm going to have to invent my own word for when I'm too "tired" to think, too " tired" to care, too "tired" to care that I don't care, too "tired" to concentrate, too "tired" for fun not to seem like too much trouble. I'm just thankful that it still waxes and wanes.

:holysheep: :Good-Post: :Thank you:

PPMS from the start, and fatigue was the first major issue, my legs felt like lead. Sleep for 12 - 16 hours and then need a nap.

I can remember when my fatigue was at it's worst that the floor was the only thing that would help me. Even a bed was to high. I wanted to get all the way down on the floor. I guess that's why when we have our big family gatherings that I don't mind sitting on the floor at all. It's my favorite place in fact. I just lean up against a chair or couch and sit there. Plus sometimes the person behind me gives me a shoulder rub or scalp massage, just because they love me!!!

End of a busy work day for me is when it hits me the hardest - when I have been on my feet, teaching and speaking for six hours and only have two small breaks. I am fine, up until 2.59 pm - then at three I am down for the count.

My last person leaves my class and I switch off - I can't be bothered moving, turning off computers, getting work together, putting textbooks back - nothing. I am thinking through fluffy clouds of cotton wool, walking through cement, my petrol tank is literally empty and planning my next task before I get to go home is torture. I sit down and stare into space (and sometimes I sit there for what seems forever - and sometimes it is), trying to compose my thoughts and mobilise my body to do as I tell it to.

I usually try to schedule my days better, and my boss generally lets me work around a schedule that I can manage. I have had lots of full days lately though.....ugh! Nice on pay day, but lately I have been too tired on the weekends to enjoy it.

I hvae been taking nice long walks in the evening lately. This evening as I was about to turn the corner that would eventually lead me to my house had a bench for bus riders. I was tempted to sit but I knew if I did then it would be very hard to get up. I could see a fence way down the street which I knew was across the street from me and I just kept my eye on it and went on auto pilot.

Today is one of those days! I woke up around 8:30. I had my breakfast and was planning my day. All of a sudden, I hit the brick wall. :confused::eek: I had only been up for less that 2 hours and had to go lay down to rest. The only "strenuous" thing I did was make my breakfast of a bowl of cereal and a smoothie. My legs feel as though I just ran a 5K.

Lynn - I don't know how you do it but am always inspired by you. I would have to nap in the classroom before heading home. And yes, showers just seem to be so exhausting. I have switched my routine around and now take my shower before going to bed. It does help but I still sometimes have to lay down with my towel on until I have the energy to get my pajamas on.

Doydie - Glad you made it home ok. That's the hard thing about taking walks. I can start out fine but then BAM! I can barely move. What's more frustrating is that it doesn't happen all the time. I never know when I start out which time it is going to be. I have not limited my walking to my courtyard at my complex. That way, home is not too far if my legs decide to stop me in my tracks.

B2Y - I was like you. I had fatigue before I knew I had MS. I could go to bed at 8 at night and sleep all the way through until 5:30 when I had to get up to go to work. It got harder as my DDs grew older as they were able to stay up later. Bedtime became 9 and then 10. That was hard on me. I just assumed I was one of those people that needed more sleep. I didn't think of it as a symptom of anything. After I was dx, that all made sense to me. Of course, because of other symptoms I was no longer able to work and could nap during the day. That has helped me quite a bit.

Sleeper - I sleep anywhere between 10 and 12 hours a day. Ten hours at night and a 1 to 2 hour nap. In fact, I took a 2 hour nap yesterday which I haven't done in a long time.

Last night, when my A/C quit, I realized how just the slightest change in
room temp., can bring on sudden fatigue. I could hardly get up to transfer
to my scooter to go potty. It was kinda scary.:eek:. I hope I'll be OK till I am
able to get it fixed.

Yikes, Sally! :hug::hug: I hope you can get your a/c fixed soon. Heat induced fatigue is no fun either. It can take me well over an hour to feel better after being in the heat too long.

Sally, do you at least have a fan to use? :(

Yes, I do have a table fan and it is on full force. I also turned the furnace
fan on manual and it's running constantly. Keeping the air moving helps a lot.
My house temp. got up to 84, but it is not too bad, because the humidity is low.
Tomorrow, I will call my furnace peeps and cry "handicapped" to see how fast
they can fix it.:D

84!!! I would be a cooked noodle with the house being 84. I'm glad you have the table fan and turned the furnace fan on to help out. I hope that they can come out tomorrow to fix the a/c. If not, do you have a cooler that you can put ice in to keep near you so you can quickly cool yourself down if it gets too hot, especially at night when you are in bed. The ice in the cooler won't melt overnight and you can grab some to cool you down so you can safely get to your scooter. I know I would be lost without mine. Of course, with our temps over 100 degrees, a/c is a must. Hang in there and let us know how you are doing.:hug:

Another fatigue kind of day! I didn't sleep well last night due to pain. I know that some of the fatigue we get is due to not sleeping well at night. For some of us, our sleep is disrupted due to pain, medicines, bladder issues, etc. and sometimes getting a good night's sleep is challenging. The lack of quality sleep contributes to our fatigue.

So sorry Trish. Hope you feel better soon.:hug:

Thanks Sally! Were you able to get the a/c guys out to work on your a/c?

Tomorrow!!!!!!:rolleyes:

Don't you just hate it when something goes wrong on a three day weekend??? One time when our AC was out I remembered something my Mom said that they did. She filled a big bowl up with ice, like a big mixing bowl. Then she placed the fan right behind it and aimed it right at herself. Now granted my husband didn't get the benefit that much but he knew I needed it more than him.