Please describe your M.S. related fatigue

[Margieppf]

like walking in a shallow end of a swimming pool carrying 2 bowling balls....all the time

[Crazyguy]

My fatigue seems to be connected to the weather. Any sudden change from dry and hot to cold and wet or vice versa triggers a flare that lasts about 3 or 4 days. My eyes feel too heavy to keep open and muscles ache. When I do close my eyes I get a sensation my head is floating but my body is weak. It kinda comes in waves where I’ll feel I can be a little productive at work for a while then hits me hard to where I have to take a break. I take provigil daily and too much caffeine interacts with my medication. I’ve taken little walks to try to get my blood pumping but that is temporary and I end up going home from work. Is there anything that works for you to combat your fatigue? I’d like to hear it. Maybe take a second provigil?

[KoKo]

Hi Crazyguy

I deal mainly with motor fatigue (arms, legs, and core get tired and weak after activity).

Frequent rest periods and cooling are the primary remedies that help temporarily.

I've been retired on disability for several years now, so I don't have a job to contend with anymore.

Good luck with finding some relief for your fatigue. I'm sure it's making your job a huge challenge.

Take Care

[pennstater]

Is there anything that works for you to combat your fatigue? I’d like to hear it. Maybe take a second provigil?

Hi Crazyguy.

I would talk to your neuro about it. It is really important they are aware of the extent you experience fatigue. I am not sure what dosage you are on of Provigil. I think 400mg is the max recommended per day.

I started out on 100 mg/day. I would take about 2 hours into my work day. When it wasn't cutting it anymore, I took my first dose when I got to work and a second 100mg about 4 hours after the first. Then 100 as first dose, 200 second dose, until finally 200 both doses. Provigil probably extended my career about 4-5 extra years working.

There are other meds that some people respond better to - Nuvigil, Adderall are examples.

There are studies that show exercise is actually really helpful in combatting MS fatigue. It is a catch-22 when working - how to find the energy to do both. But it does make a difference for me.

I am also not sure what type of work you do or type of commute to see if any job accommodations may help. I worked in technology in an office and worked from home sometimes. I also was given permission to record meetings, with the understanding of all participants that strictly used to document minutes, next project steps, etc. Once that was done and distributed, I had to delete. Just a few examples of accomodations.

You also want to eiminate any contributing non-MS factors. If on a computer, make sure you have anti-glare glasses. Make sure you are getting good sleep at night, eating foods that energize and don't sap energy, minimize distractions. If you take any Rx that cause fatigue, can you take at night rather than daytime or is there an alternative?

It can be tough to know if fatigue is cognitive fatigue causing physical fatigue or vice versa. Mine didn't become clear until I stopped working - cognitive fatigue caused it for me.

Hope you find relief.

[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.

[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!

[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.

[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!

[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 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!