Understanding fatigue

[RonRuns]

Hi,

I'm trying to make sense of fatigue. Let's say I have many more questions than answers: it's my nature and all the variability of MS doesn't help. I'm going nuts!

I've been diagnosed with MS two and a half years ago: double vision. Double vision is gone. No relapse since.

I am off work, it's been about 10 months. Biggest hurdle is fatigue and trouble concentrating and my job is very cognitive.

I was running before and doing triathlons. I am still running, cycling, swimming. I consider myself very lucky. Although, I'm not working and have more time to exercise, I train a bit less because I lack energy but still get 7 to 8 hours of training in each week. 10 to 12 hours a week was more of my routine before.

So here is the deal... It seems that whenever I speak with a health professional (neurologist, ergotherapist, family doctor, etc) their face is marked by surprise whenever I mention the exerise I do. For example, my neurologist is ramping up his training to complete his first 10k while I can run for 3+ hours straight tomorrow. And when I mention my inability to work, I can't help but feel guilt, as if I were a cheat trying to get paid disability leave and early retirement (I'll be 45 later this year). My ergotherapist, at the rehab center I go to, to help me manage fatigue, thinks I should be able to work. To which I agreed as I was having a good few days. I have a feeling that seeing that I can exercise for hours, she sees I can work. Also, she told me that most people she's seen about fatigue have it constantly, not with as much variation within a same day.

My current symptoms are not visible: periods of fatigue sometimes accompanied by blurry/tunnel vision, headache, nausea, urgency to urinate, and recently heavy legs and some tingling in my left leg.

My neurologist can't say I can't work as these symptoms are not measurable. All he did is order new MRIs.

I was wondering if anyone has had a similar experience where fatigue is not as much physical than in the head: your thinking works as if you were drunk. Some days are pretty OK while others are awful. And going for an appointment usually wakes me up because of the anticipation, I only feel fatigue coming back after that appointment.

Have you experienced mental fatigue and physical fatigue be two different things? When I feel physically tired following a workout, I'm happy because I control it, I know the cause, it makes sense, it's familiar, it will subside with rest. The fatigue in the head, I can't find a cause even with all the diaries and I can't predict when I'll feel better: in the afternoon, tomorrow, later this week?

When I have a good day, I feel guilty, that I should get back to work and all the questioning comes. I believe that I could plow through bad days just as I would plow through for a triathlon, marathon, etc.
When I have a bad day, I wonder why I was feeling the guilt and questioning, that I couldn't even rember how I felt yesterday. That whatever questioning I had made no sense.

What were my questions? Brain vs physical fatigue, does anyone see them as different? Am I just used to deal with the physical fatigue? Am I hallucinating? Any help to deal with this fatigue and the questioning is welcome.

Ronald

[Suebee]

Ron, I'm sorry to hear about your fatigue.

First, you are not imagining anything! My fatigue makes my brain feel like its 3 am and someone just woke me up but it is not 3 am, it is the middle of the day and I have to function.
I elaborate because I needed validation when I first experienced fatigue and I didn't get it. The doctors and everyone else don't truly understand unless they have lived it or with someone who has. Check out Jeff Gingold's book about his experience with cognitive difficulties as an attorney. He tells the same story as you and how he later got disability for mental fatigue/ cognitive issues.

Second, realize your doctor's role is to treat and manage your MS. This is separate and distinct from advocating for your disability benefits. Your doctor wants you well, but unfortunately, doctors are also cynical, short on time, and don't want to be in the disability advocate role (In my view, the whole disability system exploits this fact, burdening doctors with form after form month after month to certify that you are unable to work when you have a so called "invisible" disability.) So don't mistake your doctor's lack of zealous advocating for not believing in you and your troubling MS symptoms.

Third, there are several medications your neurologist can prescribe to help your cognitive fatigue. I get my neurons moving with mondifil. It makes my mind sharper and it is needed on a big paperwork day.

I wish you well, and never doubt what you are feeling.

[Marinadca]

You so very much not making it up! Physical Fatigue can be worked around, I can sit in my desk chair and be tired but still do my job just fine. Mental Fatigue, is totally different, it hits me like a wall I can't get past. I find it difficult to impossible to concentrate on work.

I work in a very "mental" heavy field as well (In finance/Accounting) and I am lucky that this type of fatigue seems to hit me once a month for half a day or so. When it does, working is a lot slower as I have to check and recheck and then stare into space for awhile and then recheck some more because its like thinking through sludge. If this was happening daily there is no way I could do my job effectively.

I much prefer the physcial fatigue that follows a few hours on the bike, It feel good to sit on my butt and work.

Please don't feel guity! You did not ask for this and I am sure you'd much rather be working then not.

[RonRuns]

Thanks to both of you for confirming that I'm not going insane. I like my neurologist and my wife and I both think he particularly likes me. He's very analytical and only goes by what he can measure. This is a great thing, especially when working with things as fuzzy as MS, Alzeimer, etc. My only issue, is help with confirming symptoms. I remember him saying a couple of time how we often tend to associate too many things to MS. Medically, I agree with testing for other possible causes. But, for my sanity, but I tend to interpret it as non acknowledgement of my symptoms and I doubt.

I keep wondering if I should switch to a neurologist in an MS clinic.

Sue, I'm on Modafinil, 100mg a day. I had my prescription uped to 200mg, but find 200mg affects my sleep with no noticeable difference. Even the 100mg doesn't feel like it does much for me for cognition. It might actually help on the physical side, feeling less lethargic.

[cl3me]

I understand what you mean; after a relapse I was having trouble making it through the day at work, yet could go cycling and horseback riding.

couple things that helped,
1. Vision issues were contributing to the fatigue. Turns out the vision loss in my left eye and blurriness was causing eye strain and cognitive fatigue. Saw specialists at CNIB and was recommended to use magnification software at work as I spend most of the day at computer. It has been a huge help, can remain focused longer at work.

2. I tried to go back to full time work right away after being off briefly for a relapse. Ended up going on reduced hours with a schedule to gradually increase hours as my "work stamina" improved. Started with half days and after 3 months was back to full time

3. Asked for accommodation of duties; was given tasks that weren't as time sensitive so that I could work at my own pace. As my work stamina and performance has improved I am taking on tasks with greater responsibility again.

I spoke to an Occupational Therapist at a conference who was studying ms fatigue, and she described it like layers of an onion and how there are different facets to it, my vision issues for example, once I addressed that it was a major layer of the onion.

I find the physical fatigue more problematic during a relapse and recovery, so weak I can't even carry the laundry basket up the stairs. Luckily I have long periods of stability so I can remain active with cycling, horses, and kayaking.

Hope you are able to find a good balance!

Karen

[RonRuns]

Thank you Karen, that is great info!

1- I was wondering about vision causing fatigue. I have some residual INO (internuclear ophthalmoplegia), eyes don't stay aligned together when moving causing the blurring. Is this what you have too? I have seen a neuro-ophtalmologist a couple of times and I don't seem fit to have prism glasses to help. I can try magnifying the screen, see if it helps.

2- I've started today a "Return to Work" program at the public rehab center where they simulate wor tasks. They gave me very simple office work tasks for 3 hours. The hardest task, surprisingly, was double checking an order, ie cross referencing two lists. I started feeling the fatigue and blurry vision then. If things go well, after 3 weeks or earlier they'll see with my employer to see if they could continue the program at work. I'm a computer engineer and team lead and it's hard to replicate the tasks at the center.

Your experience gives me hope and I'm lucky I haven't had a relapse, I think.

Ronald

[girl1dir]

Ron, I don't think I saw it in your posts... are you on any MS meds and do you happen to be on new meds, in addition to MS meds, since your diagnosis?

I ask because there are some headache prevention meds out there that can CAUSE Cog Fog (cognition fogginess).

I refused to take one of the headache meds because of this. How would I know if it is my meds or my MS causing this new symptom? I wasn't about to let that happen. I am a project manager and I need my brain as active as possible for the 7 projects I am managing.


I get more physical fatigue than mental fatigue, though there are days when nothing works -- brain, legs, sense of humor.
Hang in there!!! <3 girl1dir

[Suebee]

Ron, prisims didn't work for me either. A neuro-ophthalmologist said I could always close or patch an eye if needed. I have sometimes done this when I got tired of visual issues. Also, try 100 mg in early morning and 100 mg in afternoon. This works best for me- I got dosing schedule from mayo or cleavland clinic website.
Also, is attention/ distraction causing cognitive fatigue? I found I had to be really disciplined with when I reviewed/ answered emails and phone calls, and other daily tasks. Also, if office noise bothers you, take steps to remove or block noise out. Use smart phone and calendar to Schedule all your activities and keep you on track. The idea being you are freeing up your mental energy to do task rather than remembering to do task. Stay positive. Believe in you. Read antidotes by MSers about it when you feel no one understands. Best of luck!

[RonRuns]

@girl1dir
No headache meds. DMD: Tecfidera Fatigue: Modafinil
@suebee
I had the same suggestion about an eye patch. I found that I saw worse with one eye closed so I didn't pursue the patch idea. Maybe I should try it.
The smartphone is my friend with all activities and meds. It was already at work for all meetings and nap. I'll keep an eye on noise levels.

Thanks

[RonRuns]

Back from day two - "Return to work program"

I had more simple tasks to do: look up order items in a catalog and fill an order form: two hours.
Headache, blurry vision from the start, light nausea.
Then met with the psychologist of the program. She asked questions to get a first idea of my situation. I gave all my energy to focus on the questions and answer, through the fog, headache, vision issues.

One thing that now strikes me is when she told me that I don't seem totally disabled as I carried the conversation fine. I didn't comment on how it was difficult. Now, Im wondering if I'm expected to work feeling like that? Headache, nausea, blurry vision and spending all my energy on what seemed trivial before.

I'm going tomorrow again and talk about it to the occupational therapist.

[Suebee]

Ron, your last post compelled me to say that I had a really negative awful horrendous experience with my ltd. It is hard to get benefits for so called invisible disease. But Note there are special gold standard tests to establish disability. Your neuro can prescribe a spectro Mri if he thinks it will show the neural misfunction, or a visual evoked potential to show an area of slowing of info; there is also a specific paper test he can prescribe to show your cognitive deficits (I can't tell from your story if u did that); there is a physical PT test to show lack of endurance Also the MS society has info on getting benefits from SS and ltd, and you may have a union rep to help too. Don't forget to Review the rules of your benefits and Get a free consult with an attorney. All this said, I'm so sorry you are going through this. I know you will find your way through all this. I continued to improve for years after my first attack. Keep trying. Don't give up!

[cl3me]

Vision issues and fatigue

Hi Ron,
Bad bout of optic neuritis left me with permanent vision loss in my left eye (don't even make it on the eye chart), afferent pupil defect (doesn't react to light properly, sluggish reaction), central scotoma, and no color vision. My right eye is perfect. With both eyes open field of vision has some spots that are blurry/out of focus. I am light sensitive.

My occupational therapist sent me to the Canadian National Institute for the Blind for evaluation in their low vision clinic.

Discovered I need large print for reading comfortably for long periods, magnification of 1.75 works for me. If I can't get large print I use plain old "reader" magnification glasses I bought at the drug store.

Polarized sunglasses work for me as well, the extra reduction in glare ahelps with the light sensitivity, and the improved color contrast has been a huge help for driving especially.

I use ZoomText magnification and reader software at work with 2 side by side monitors. I was recommended to "listen" to my emails and articles using the spoken reader function, I don't use this as much as I should. The software allows for different use of contrast colors too, helps reduce glare. If you require magnification of 2x or less I highly recommend the software, my company footed the bill when I gave them the assessment letter from CNIB

They also recommended for me turning down lights and using task lighting. I don't use this yet, but I may be moving desks and the bright fluorescent lights bug my eye...

Covering the bad eye helps too, but was told to use for short periods of time only, extended use of patch may cause "lazy eye", will often see me covering an eye to read for short stints, or when I'm trying to see the bus route number lol.

I was pleasantly surprised how addressing my specific vision issues helped with fatigue and cog function.

I hope you can find some adaptations that will help!

Karen

[Suebee]

Excellent suggestions Karen ! I was given only general tips like using zoom function on PC and magnifying glass for paper. Struggled on return to work but I intuitively dimmed lights, and used polarized glasses. A ruler I found useful to run down a page or to get eyes to scan across page on a sentence by putting it under the sentence. I will look into the software you mentioned. A therapist told me generally to use all my senses to get info into in my brain i.e. Hearing info, seeing info, writing info. But the special software to read emails or articles actually tells me how to that. Also, I find summarizing /synthesizing out loud to myself as I get ready in morning in small bits helps me encode it in my brain and retrieve faster. There is also timer apps for billable work and I played around with one and think that this kind of app would be helpful with both multi tasking assignments and documenting time each used. However, The learning curve on the timer app made me put it aside. I would love to hear more software/ apps that other MSers find helpful to aid their workday, workflow and even home calendar.

[girl1dir]

Back from day two - "Return to work program"

I had more simple tasks to do: look up order items in a catalog and fill an order form: two hours.
Headache, blurry vision from the start, light nausea.
Then met with the psychologist of the program. She asked questions to get a first idea of my situation. I gave all my energy to focus on the questions and answer, through the fog, headache, vision issues.

One thing that now strikes me is when she told me that I don't seem totally disabled as I carried the conversation fine. I didn't comment on how it was difficult. Now, Im wondering if I'm expected to work feeling like that? Headache, nausea, blurry vision and spending all my energy on what seemed trivial before.

I'm going tomorrow again and talk about it to the occupational therapist.

Maybe you should concentrate, but not so much that you come off as "normal"?? if you fight so hard inside yourself to pass tests or act like others expect, they'll never see or understand the difficulty you have at work.

I read somewhere that a woman was continually disapproved for disability because she always spent time to make herself look good (do hair, make up, etc.) because it made her feel good but also hid her problems. Husband said, show them how you really feel... she did as he suggested and boom, approved. She stopped fighting it during interviews, tests, and paperwork and showed her disabled self. She admitted it was VERY HARD to do, to let others see her like that, but it was the thing she needed to do to get the support she needed.

Good luck!!

[MissP]

Understanding Fatigue

Well, every day is like pot luck! I have found that the fatigue is very random. I am also learning on a very steep learning curve, that I am past the point of pushing as much as I can. I have had to slow a little and spend days not doing anything otherwise, for me and I don't know about others, it is like I have run out of whatever we are supposed to have to keep us going. It is a balancing act. Then, like a few weeks ago, I woke up without pain, thinking free and feeling well. So I went to the seaside for two days and it felt like a month. If I am good and don't have the massive muscle pain, fatigue and brain fuzz, I take advantage and do something nice or go somewhere as I don't know what will happen by the end of the week. It is a very different life to before and I have found that people have drifted away but, I still have quality in every day and don't concentrate on the bad things too much. I always say that the fatigue only comes with a day with a Y in it ha ha!