Please describe your M.S. related fatigue

[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.

[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

[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?

[Margieppf]

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

[beckl]

Describing MS Fatigue

I agree with everyone on this, but would add that I feel like I don’t have enough energy even to sleep.

[sunshine008]

Hi

Hmmm sorry your going thru it. Yea for me it hits towards end of work day. When I'm in last session, legit feels like I'll pass out.

So I eat raisans and a lot of apples thru the day and tons of water. Sounds goofy yet it helps. The natural sugar gives me bit of a push. Exercise helps, it creates new brain matter I once read in some medical journal. Yoga also is huge to get circulation better.

Hang tough!! 😊😊

[SNOOPY]

Hi thestraltrainer,

Now that I have been diagnosed it makes so much more sense. This has happened more times but luckily I haven't been at work. It's nice to know I'm not crazy.

Nope, your not crazy I would suggest speaking to your Neurologist about your fatigue. There are medications that can be tried:

- Provigil
- Nuvigil
- Attention Deficit Hyperactivity Disorder (ADHD/ADD) medications (Ritalin, Adderall, etc.)
- Amantadine (anti-viral) has been shown to help MS fatigue but rarely prescribed as the medications listed above are usually preferable now a days.

Non-medication options:

- Exercise. Yes, I know that doesn't make much sense when you are already tired and falling asleep at inopportune moments. However, exercise has been shown to help with fatigue, pain, stiffness, mobility and cognition.

- Take naps when needed.

Dealing with MS fatigue isn't easy. Even on medications the fatigue can still be a problem and it's possible for medications to not be as helpful as one may like or a person doesn't do well with side effects.

Other medications prescribed for MS such as muscle relaxers can cause fatigue which has the potential for adding to your fatigue.

Hope you find what works for your fatigue

[thestraltrainer]

Glad to find this thread

This thread is so helpful. I am newly diagnosed with MS and had been suffering from fatigue for the past few years. I've had to pull over while driving and sleep in parking lots a number of times because all the sudden I lose all energy and my eyes go blurry. It's like it hits and I have to lay down immediately. Another incident occurred at work. I was in a very stressful job with demanding hours. One day while I was at a job site I got hit with the most extreme fatigue. I couldn't stand up, my vision was completely blurry and I laid my head down and fell asleep for about 2 hours. A coworker found me and was having trouble waking me up so she called our manager. They forced me to go to a clinic to be drug and alcohol tested (all negative of course). I was written up for sleeping at work and I was completely devastated because I honestly hadn't done it on purpose. I just lost all energy and couldn't carry on. Now that I have been diagnosed it makes so much more sense. This has happened more times but luckily I haven't been at work. It's nice to know I'm not crazy.

[jmerced]

I'm glad I found this thread. I actually came here for the first time in a while to find some advice as I've really been struggling the last couple of weeks and have no idea how to articulate it. I just think about describing what I'm feeling and want to cry, maybe I've yet to come to terms with the fact that I have MS even after all these years, or maybe this is just part of the reality of having an invisible disease.

"It's like gravity is mad at me" is a really good (and funny) description. At times I feel like I have the flu. Sometimes I feel like it's just the "2 o'clock feeling" but amplified by a hundred.

My office moved into a warehouse space, there's no temperature control. Being in Southern California, the temperatures are starting to get hotter, and there's no airflow and it's upwards of 85 degrees in here in the afternoons. It feels like I'm figuratively running a marathon in the afternoon, just holding out, just one more hour as if it's one more mile to get to mile 26. I look around and it's obvious that everyone is slightly uncomfortable with the temperature, I then I have these doubts that I'm being dramatic, that I'm a baby. So I hold out for one more mile/hour. It's really like I'm mentally running a race, to keep my eyes open, to breathe sometimes, to focus on my computer screen, to type.

So, I know this is not healthy. That it's not the same thing everyone else is feeling. I get emotional even thinking about bringing up the subject with my employer because I'm insecure about my relationship with MS and hate seeming like a failure. I've also been fortunate, I know, that MS isn't something that has affected me negatively too much so I rarely discuss it, especially with my co-workers. And while I make it to the end of the day, miserable, I don't go home and go straight to sleep, most days I still attend my extra-curricular activities, like volleyball on Wednesdays and dance on Thursdays. I feel like these actions debunk my feelings of utter exhaustion while I'm at work, making it a null point. I can just feel this judgement like "yeah, suuure, you're 'tired' but you still went out"... I'm not even sure they'd actually think that, I just don't understand why my brain does operate that way.

Anyway, thank you for listening. And for making me feel less alone.

[KoKo]

I might have already shared this. (If so, sorry about repeating.) Because most sympathetic people will try to understand you, they'll hear what you say and assign it to something they've experienced. They're trying very hard to understand, but they don't have the experience to assign it to. So, I describe the fatigue in a few ways that I think most people can understand.

MS fatigue is not like being tired. Fatigue is like having the flu. Most people have had either the flu or something like it that leaves them too exhausted to sit up. They understand that.

Too tired to go to bed. Everyone has experienced that and stayed on the couch. MS fatigue is being too tired to lay down. Laying there motionless is taking more energy than you have.

Fatigue from doing simple things. It's like hitting the wall. Energy/No Energy. That quickly. And it's not about not having the energy to continue a rigorous hike. It's about needing to lay down. About not being able to drive home, because your vision is now blurry. I describe taking a very short walk to feeling like I've done too many squats, because everyone has done that and felt the jelly legs followed by the stiffness and pain.

I think we need to compare it to something they've experienced. They hear fatigue and think tired. Everyone's been tired, and they don't know the difference. They're lucky.

MMMMS

Excellent post!

Take Care

[MMMMS]

Too Tired to Lay Down

Although I'm one of the lucky ones whose MS symptoms are "mild," I have had it for most of my adult life (some 40 years now). For me, fatigue is, by far, the hardest symptom to deal with, since the only thing that I can do is go to bed. Many years ago, my neurologist recommended Provigil; at last, something that truly helps the fatigue. It has changed the quality of my life!

But sometimes--and for the last few weeks--the Provigil isn't enough. I tell my husband I don't have enough energy to go to bed.

I might have already shared this. (If so, sorry about repeating.) Because most sympathetic people will try to understand you, they'll hear what you say and assign it to something they've experienced. They're trying very hard to understand, but they don't have the experience to assign it to. So, I describe the fatigue in a few ways that I think most people can understand.

MS fatigue is not like being tired. Fatigue is like having the flu. Most people have had either the flu or something like it that leaves them too exhausted to sit up. They understand that.

Too tired to go to bed. Everyone has experienced that and stayed on the couch. MS fatigue is being too tired to lay down. Laying there motionless is taking more energy than you have.

Fatigue from doing simple things. It's like hitting the wall. Energy/No Energy. That quickly. And it's not about not having the energy to continue a rigorous hike. It's about needing to lay down. About not being able to drive home, because your vision is now blurry. I describe taking a very short walk to feeling like I've done too many squats, because everyone has done that and felt the jelly legs followed by the stiffness and pain.

I think we need to compare it to something they've experienced. They hear fatigue and think tired. Everyone's been tired, and they don't know the difference. They're lucky.

[pennstater]

I are frequently tired, but usually functional. When fatigue hits really hard, I describe it to my husband as "I'm tired, but not need-a-nap tired. I am so tired, I don't think I can lift my arm to scratch my head!" I still work full-time, but some evenings, I need my husband's assistance to even be able to get to the bathroom. Then, I sit in the shower with tears running down my cheeks because it seems an insurmountable task to get out of the shower, dry off, get dressed, brush my teeth, get my meds out for the next day, then crawl into bed. It's just too hard sometimes!!

So sorry you are experiencing this type of fatigue. I can relate. Once I could no longer feed myself after a workday, I finally called it quits. I pray you get some relief.

[Thinkimjob]

I are frequently tired, but usually functional. When fatigue hits really hard, I describe it to my husband as "I'm tired, but not need-a-nap tired. I am so tired, I don't think I can lift my arm to scratch my head!" I still work full-time, but some evenings, I need my husband's assistance to even be able to get to the bathroom. Then, I sit in the shower with tears running down my cheeks because it seems an insurmountable task to get out of the shower, dry off, get dressed, brush my teeth, get my meds out for the next day, then crawl into bed. It's just too hard sometimes!!

Oh I can relate to that. Some days the thought of having to have a shower just makes me cry.

I'm not scared of falling over; I'm scared because I know how exhausted I'll be when it's finally over.

My fatigue has got actually got worse since I stopped working. Having something else to think about other than MS really helped.

[Canary54]

I are frequently tired, but usually functional. When fatigue hits really hard, I describe it to my husband as "I'm tired, but not need-a-nap tired. I am so tired, I don't think I can lift my arm to scratch my head!" I still work full-time, but some evenings, I need my husband's assistance to even be able to get to the bathroom. Then, I sit in the shower with tears running down my cheeks because it seems an insurmountable task to get out of the shower, dry off, get dressed, brush my teeth, get my meds out for the next day, then crawl into bed. It's just too hard sometimes!!

[Carolinemf]

Hi beckl,
i'm sorry you are going through a tough time of late and hope things improve soon.
I just had 11 hrs sleep and i'll prob need a nanny nap after lunch -i'm worse than a toddler.
look forward to updates.