@Krista

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Krista

Fatigue/brain fog

Hey, Just wondering if anyone who has an office job has been assessed for fatigue and congenital issues and not being able to work? I am struggling to get through the day and I am only at half of my expected production. My vision goes blurry and I can’t concentrate even when I try really hard to focus. 1 year ago I was facilitating and coaching others and new hires at my job, now I am struggling to complete daily tasks. Something that used to take me 5 mins is not taking me 18-41 min. Has anyone experienced this, if so was there anything that helped?

Beshrp1

@Beshrp1

@kmcd- when was working full time(24 of the 27 years of MS) with young children; my neurologist recommended Modafinil/ Alertec to combat fatigue and brain fog. It’s not an MS therapy drug, but worked wonders for me!! Inquire. 🇨🇦❤️Be well!!!luck!😊

Beshrp1

@Beshrp1

@kmcd- when was working full time(24 of the 27 years of MS) with young children; my neurologist recommended Modafinil/ Alertec to combat fatigue and brain fog. It’s not an MS therapy drug, but worked wonders for me!! Inquire. 🇨🇦❤️Be well!!!luck!😊 ( I worked for Canadian Imperial Bank of Commerce and Dodge btw, so had to be top notch! )

sara_pinier

@sara_pinier

@kmcd I am a mother, full-time student, a nurse and I work full time. At first when my brain fog began at it's worst I was living off caffeine pills... Not the best idea... After changing diet and incorporating exercise... My neuro first prescribed nuvigil. But I felt like it made me numb, told my neuro then tried me on Adderall it works.

Krista

@Krista

@beshrp1 - thanks for response, I will definitely inquire about this. I have 4 children, and work full time. I was diagnosed 1 year ago, and have found fatigue/brain fog has really overcome me. I have had one 1/2 dose of Ocrevus and scheduled for 2 1/2 does on the 19th of February. My neurologist prescribed me Amantadine to help at work but when I took it, I felt SO dizzy and more fatigued. They recommended I get the 2 first infusions done and try the Amantadine one more time. If it still doesn’t improve things they said they would try something different so I will definitely ask about the other meds you ladies have recommended! Always nice to hear other people experiences.

Krista

@Krista

@sara_pinier - Wow that is such a busy schedule to manage. Honestly I can’t imagine that, I give you credit! Thank you for sharing things that did not work and what you found was helpful, I really appreciate the recommendations! As mentioned I will have to try the Amantadine once more, but if I still find it no good, I will be asking about these other meds!

DominicS

@DominicS

I was prescribed Modafinil 200mg bd (I only use it od) when I was doing my MSc recently and it was all getting a bit much. Bloody marvellous stuff.

Krista

@Krista

@dominics - so glad to hear that, thx so much for sharing! I think this is one of the meds the nurse recommended I try next, so I am excited to hear you found it works! Super helpful!!! Did you happen to have any negative side effects that were bothersome?

DominicS

@DominicS

@kmcd I was rx'd 400, 200 morning and 200 noon but for me the dose response curve pretty much plateaued at 200 and the only extra thing was shoulder tension and mild teeth clenching (can't say that wasn't anxiety over the degree though ;) ) so I have stuck to 200 in the morning. I take it daily 24 months on. It was and remains transformative with zero adverse effects. You stop noticing it overtly pretty early on. However, I do notice on the rare occasions I have forgotten.

Krista

@Krista

@dominics - thank you for the info, I am glad to hear this medication has been tolerated well! Gives me hope 😊

Blagaman182

@Blagaman182

Morning guys. I typed ‘brain fog’ into the search because for the last 2 years I seem to be getting this cloudiness in my head... it’s like there’s cotton wool in there. Iv been battling to find out what it is.. I’m not sure it’s MS related, I don’t forget stuff there’s just this kind of mild dizziness and a sense that I’m not quite fully with it. I struggle with my sinuses so that’s what drs are thinking it is. any advice?

chezy17

@chezy17

I work in a school at the moment aswell as studying a degree and bringing up the munchkins. When I can, I nap and I rest and do things for me when they see their dad. Other than exercise, I don't really take anything for fatigue, I just have to rest when I can. It's the only thing that affects me with my MS. I think keeping on top of your mental health and well being plays a huge part in managing fatigue. I do take a alot of vitamin D and try and eat more fish these days as that's meant to be good for your 🧠?

ItsMewithMS

@ItsMewithMS

@blagaman182 the common term for it is Cog Fog or CogFog I went to Mayo clinic in rochester MN where they have a good Neuro dept and had a Neuro Psych eval that good a good part of a day and was quite thorough. For me they only found deficits in short term memory. This gave me the confidence to start looking for work again as a systems accountant. I managed to get into Mayo for this eval with about a 6 month wait...I asked my neuro if I should keep the appointment (as it required another long drive there) and they said I should as all the waiting lists closer to home were for a year or more...super hard to get into and find and yet an MS person should have one of these every year or two I would think. I am also going to inquire if my neuro has access to the Neuro Quant tool to measure brain volume loss/black holes, etc in your MRI. I've heard of this discussed by Dr Boster in some of his you tube videos on his channel. Super hard to get into a specialist for this here and measure like is discussed in articles you can read...I'm tempted to go to Dr Boster's MS Center in Ohio when it is built out as it will be a true MS Center.

Wilf

@Wilf

https://www.mssociety.org.uk/care-and-support/online-community/community-blog/katherine-fatigue-story I tested a fatigue course for the MS Society and then became a case study for them and now I'm on their website and just got interviewed by BBC South. I highly recommend the course, you’ll learn a lot about fatigue and how to manage it

fingersandtoes

@fingersandtoes

@wilf was that FACETS? I did it and it was great. They have just put the course online! Doing it in a group was good so I would recommend that, but I would encourage anyone without offline access to the course to give it a go. I don't have a link on me but hopefully it's not too difficult to find on the MS Society site.

bethyannelies

@bethyannelies

@dominics Agreed! Modafinil is fabulous stuff! I was a zombie for a year post a disabling relapse- couldn't even watch something new on TV because I couldn't follow it. Modafinil changed my life.

bethyannelies

@bethyannelies

When I did work, fatigue management through my OT helped. Things like having a printer on your desk if you print a lot, or only printing everything once a day so you don't have to keep walking up and down to collect. Rather than an hours lunch, they allowed me to split it into the rest of the day depending on how I felt that day, so like 2 15 minute breaks morning and afternoon and a 30 min lunch. and I would sit on my own if it was a bad day, just for some peace and quiet. I changed my hours because I found it easier to work in the morning so I would start at 7.45 and finish at 3.30-4. This was all pre fatigue meds. I've since had to stop work because my MS progressed and fatigue became another level. I used to listen to music (although that's the only job that has ever allowed that) which used to block out all the background noise, which helped a lot.

Wilf

@Wilf

@fingersandtoes it was the new online course, don’t think there’s any face to face courses near me. My work have been great, I start an hour later in the morning, have 2 x 30min breaks plus lunch break. I would often talk myself out of taking the breaks but the course has helped me to ignore the unhelpful thoughts

fingersandtoes

@fingersandtoes

I've just bought some CBD oil. A friend with fibromyalgia swears by it for her fatigue. So I'm going to give it a go.

Chrissywhatidid

@Chrissywhatidid

@blagaman182 -- Your description is very similar to my experience of cog fog. The ol' cotton brain. It's a luxury, but when I can just lie down for 20 min, it's not exactly a nap because I think I'm only out for about five minutes of it, but somehow it clears my head a bit. On the days when I can't lie down, fresh air sometimes helps just enough to get me through.