This Is MS Multiple Sclerosis Community: Knowledge & Support

[Miss_Feisty]

Man who runs in front of car gets......tired.
Man who runs behind car gets.......exhausted.

How do those of you, who deal with fatigue make it through the day? I am curious what a "day in the life" of another ms'er who is affected by it lives?

I try to get rest but it's never enough. I have tried the provigil but it doesn't give me energy. Should I begin knawing on coffee beans?

I would love to hear how it is dealt with and creative ways of getting things done!

[catfreak]

Hi Miss Fiesty,

My fatique is really bad also. I work from home so I can get up and work in my PJ's if I want. I told my husband I don't think I could get up and drive 30 minutes to work do the 8 hr day and drive home like I did last year. It's not the work, it's the getting up and getting ready when you feel like you have had zero rest.

I do take provigil. It does not really give me energy but it does help me to have a clearer thought process. I try not to take it on the weekends, just through the week when I am doing my Rebif shots. We had a get together Sunday for my Moms 73 birthday, I was fixing food to take and there was one point that I thought I just could not move another muscle in my body. I just wanted to sit down and cry but that would not get the job done so I kept going, pain, fatigue and all.

I do also love my coffee in the morning. I think if I took the right supplements I would feel better and have more energy. I am looking into that now. since all these meds deplete the good things from our body.

I don't know if I really have any creative ways to deal with the fatigue except to ask for help. I am a control freak and asking for help is just not in my vocabulary, but I do ask now. Not as much as I should, but I am getting better about it.

Maybe somebody will post some great ideas that we can both use.

CF

[questor]

Hi,
Poor stamina and physical fatigue are also major problems for me. I also tried provigil and amantadine, and did not experience a benefit (although I have learned to use provigil for mental cloudiness/fog when this is a problem, if I can catch it early in the morning, 100mg provigil helps to clear it).

At its worst, the physical fatigue is almost like a form of pain. In the past I got some relief with large doses of aspirin. I say in the past, because starting in September of 2007 I began to use low dose naltrexone (LDN 4.5mg nightly before sleep) and also acetyl l-carnitine (ALCAR, which I get over the counter, I take 1gm two or three times a day, ideally 1hr before eating).

The physical fatigue problem is greatly reduced. It has been months since I have had to use aspirin to reduce the discomfort of physical fatigue. And, I think I have gotten about a 20% improvement in stamina as well (it's hard to quantify this).

--Tracy

[cheerleader]

Hi Feisty...
Fatigue is the pits. My husband has found a 600mg EGCG supplement (green tea extract) and a quercetin supplement taken together a couple of times during the day have helped him get thru. He stopped taking his afternoon nap....says he can't believe the difference. Lance Armstrong has been hawking this combo as an energy drink, but you can get it yourself as supplements at the health food store. Both are flavonoids, and give you instant energy as antioxidants.
Good luck!
AC

[Miss_Feisty]

Catfreak we sound alike in many respects. I quit the rebif though, I was allergic to it. The nutrient depletion is a great point and I do know that this must contribute partially to the problem. There was a discussion recently about the neurontin & my sleep issues. Jimmylegs found a few good mentions on this topic. Were you involved in the neurotin post...sorry I can't recall.

Gauging by the way I feel somedays (dragged out as opposed to generally tired) there must be something more to the long term aspects of pill popping. I am increasing my D vitamin and others short term and there is a slight difference. I also wonder how our homones are affected by depletions and if there is a way to pinpoint certain days to "build up to" with nutrients.

Tuckertd: I totally understand about the pain reliever aspect, I have tried working on the pain and it does help to an extent. It's a bit of a vicious circle with fatigue/pain and drugs. Interesting about the LDN and ALCAR.
I would like to pursue the LDN.

Cheerleader: green tea extract and quercetin, interesting supplements. Happy to hear your husband can avoid the "nap". As great as it sounds to so many others, it certainly can be an interuption when it becomes a necessary way of life. I'll do a little search on the items you mention.

Now with fatigue.....there are a few things I've tried just to reserve energy to get through the day. It is a lifestyle change and is really difficult to explain to others why I'm "sitting on the floor". I can ask for help with some things, but I don't want to give up my independence completely.
There are days I don't want to get out of bed and others where I feel satisfied putting away a basket of laundry. Housework is usually a challenge and days where there are outside obligations, the home is on the back burner. I look at everything differently now, it's all about perspective.

It is no longer a sink full of dishes, it becomes a mission. How do I get the dishes clean and in the cupboard expending as little energy as possible?
Sounds silly, but not to people with fatigue and who have a whole day ahead.

I cannot hire a full time maid, I am one of those people who would like to have the house clean before the maid comes!

These are a few things I do to conserve:
-stool for dish washing or counter work (food prep)
-involve others on the days I cook (we all take turns)
-sit down while mopping/vaccuming
-place items in easy to reach places (no more digging)
-buy more canned items than jars (tugging at a lid can be tiring if not impossible)
-remain seated when folding laundry

There are many more things I have changed but can always use ideas.
I think it's a matter of getting away from the "push and pay". We push to get things done and pay physically the next day.

I have read where people don't have enough energy to cook for themselves some days. I have been there and I'm guilty when left alone. I simply won't bother because it's too much work. This sounds insane, but as proud as I am, I admit to it. I have committed to having items on hand that do not require cooking and nibbling on natural foods when these days arise.

There are so many changes we make without realizing it. While finding some kind soul to help is a blessing, there are times we need to fend for ourselves in the healthiest way possible.

[Loobie]

Sounds like you have already done a pretty good job of adapting. I do the same things with the stools and the seated position for laundry. Bending down is just too much work and hurts too much. I bought (actually it was a gift) a Dr.s stool with really easy, 360 swivel casters that also has a height cylinder like an office chair. Since we have hardwood throughout the main floor, there are times where I will stay sitting on that damn thing for hours.

I can unload the dishwasher with it, tend to the fire, roll up to the coffee table to play some Scrabble or something. You just do what you have to to attepmt to make life as enjoyable as you can. And being exhausted is not enjoyable.

I look at this stuff sometimes and get bummed out that I have to deal with all of it. But then I think it's not MS, it's just life with MS as an extra. We happen to have MS, but we all have problems we have to solve. So the problems we have to solve revolve more around our MS, but they are still just problems to be solved. I say this understanding that there will possibly be a point where that is much different if the disability becomes too severe. But now while I still can do things, albeit with much more effort and much less enjoyment, I need to and these things you are talking about dealing with are those things.

So we are all doing this stuff to conserve energy. I stepped back one day and thought "what am I saving it for?". And the answer was so that you still have some left to do something you actually might enjoy, or to keep enough energy reserved to keep your job. Keep up the good work. It sounds to me like you are being creative and solving those problems. Hell, I have a chair in my closet, a chair by the washer and drier. My stool for all things on the first floor. So I now have two card tables worth of folding chairs all around the house, but hey, it makes that trip back up the stairs with the laundry basket hurt just a little less.

One other thing I forgot to add. I also use NSAIDS for the pain that comes with being on your feet too long and what not. I find they work much better if I rotate them week to week. One week I'll use ibuprofen. The next naproxen, and then aspirin or Tylenol. I don't know if that does anything, but in my mind anyway, I think it may make them more effective as you aren't getting used to one.

[jimmylegs]

keep it up with the d3 miss, maybe chris will chime in here. i noticed he posted recently that his fatigue was really improved since making a dent in his d3 deficiency issues.
i have not tried ecgc or quercetin, but i'd certainly buy the notion of antioxidants helping too. i haven't tried those ones but i certainly get many other antioxidants in me and i feel pretty normal day to day!
good luck navigating your way through it, you'll come out of it all right
i forget if you had posted a recent d3 level? was it you that has the recalcitrant and recurring d3 issue?

[71jules]

Ok although I know anything I have tried to help with severe fatigue and nothing works I cama across something that surprised me.
This is for tiredness in the mornings, apples are supposedly meant to wake you up more than a coffee!!!!!!
Now this info came from wait for it, a panty liner strip from Libra with facts about different things. I have a giggle due to the knowledge I now have thanks to Libra.

Hope I haven't embarrased anyone here and given you all a smile.

Jules

[Miss_Feisty]

Loobie: a doc's stool.....what a great idea!!!!!
I fear my inner child would intervene and tempt me to spin in circles, as opposed to my typical walking in circles.
Hmmm explaining my dizziness would now make sense!

Seriously, I may borrow that idea from you. I particularly like the height adjustment option, now that I think of it, there would be less getting off and on a regular stool.

I am also considering an "extenda arm"....those grabber thingies. Would save from bending so many times when dropping things.

Now for the dreaded laundry basket and stairs....has anyone invented a pulley system yet? It would definitely be something I would buy. Or a laundry basket with a built in robotic stair climber..anyone?

JL: I'm still working on my D3's.....a work in progress. Even when all is well with the levels, I'm still tired but have more endurance than when they are below satisfactory.

71Jules: That is the most bizarre thing I've heard all day!! How is it that you are able to buy feminine products with such wisdom? Wow. I wouldn't admit that to too many people, before you know it advertisements will be overtaking the liners!

[jimmylegs]

cool, miss. could i ask what does your doc mean by "all is well" in ng/mL [or nmol/L] 25(OH)? did you post your last result on here somewhere? have you hit 40/100 often? (that's 40ng/mL OR 100nmol/L)

LOL jules! bring it on, my goodness what is this site for if not to share and smile

[MrsGeorge]

tbh i never really thought about how I have adapted - I just have. I will quite often sit down to prepare meals. As for laundry, I drop it over the banisters so I don't have to carry it - lazy and satisfying!

My husband also pitches in quite a lot. I delegate quite a bit these days. I think I am also learning to be less bothered than I was - I can't keep an insanely neat house anymore!

[robbie]

So I now have two card tables worth of folding chairs all around the house,

Had the same thing here, a chair becomes your best friend and even more after a while.

[notasperfectasyou]

Kim has combined Provigil with high doses of ascorbic acid. Specifically the calcium, zinc, potassium and magnesium ascorbate kind. She's taking about 5g of C a day.

[Miss_Feisty]

Thank you everyone for sharing your experiences and supplements.
Much appreciated.

[Sharon]

Miss Feisty -

Have you had your hormone levels checked? I do not know how old you are, but if you are around 40 or later, I would suggest you get tests done for the hormones, also the thyroid (TSH). You may be perimenapausal - this might not be your MS at all. Shayk (from this forum) is the guru of hormones - you might PM her.

Sharon