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Greets and a small thing :)

I originally posted this in the Young People forum, however I was told it’s relatively unvisited and suggested repost here, so here goes :slight_smile:

Hi, everyone. I’m completely new here, so I’ll just drop an introduction.

I am Nero. I was diagnosed in 2010, and the type I seem to have is relapsing-remitting. I started with my left side of the body having pins and needles and numbness with a millimeter precision. It went away after a while, but I still have a remnant - little finger and left half of the ring finger of my left hand are still that way even now, 3 and a half years later.

I was treated with Copaxone (dreadful side effects 50% of the time) and later on Avonex (but spending a day every week feeling like I had flu wasn’t fun). Either way, I dropped the treatment and my condition has unchanged, other than something that kept changing even on either of them - fatigue.

I haven’t really had any real relapses recently - I started off with a few episodes of numbness and an episode of optic neuritis but what’s happening is more terrifying than either of those.

I experience fatigue - less so physical one, more so mental. My brain just shuts down, I stop processing information and it’s just gotten worse and worse - it usually happens during the second half of the day, around 3-4 and lasts several hours (I can gather some energy over half an hour for a small burst in the meanwhile), but it’s really difficult. I’ve been able to manage back in my birth country by going to work by 6 leaving around 12 or 14 (so I get a few personal hours in), and then just sulking and doing things you don’t need to think about, like watching sitcoms and… forgetting all about them later on because storing information becomes complicated. I’ve been edging on the still-tolerable and ‘gone’ level for the entire duration of writing this post.

I think I’ve been hit by it hard - I’m a software engineer by profession, which makes it so difficult, especially now that I moved to UK and it seems it’s common for people to work from 9 to 5:30… meaning if I want to clock hours, I need to sit at work and be completely useless for anywhere between 1-2 hours (it can kick in rapidly and take an hour or two to progress). I just finished a talk with my boss, and he reckons management might need somesort of certificate from doctor. I visited a surgery the other day, and supposedly they sent my details to the Western General Hospital in Edinburgh (I live here now), so I need an appointment soon.

However… it’s difficult. It destroys my personal life and interferes with work, too, even though the possibilities are there to be flexible.

So what I really am after, I guess is… has anyone else been experiencing anything alike? How did you manage it from a 9-5(:30) work? How did it affect your life? Possible suggestions of things in the UK?

Cheers :slight_smile: Nero

hiya

i havent read all ur post, my issues, not ur words!

i understand ur frustrations/concerns. there are meds to help ‘brainfog’ (am sure someone will be along to name them). have u considered meditation? i have found it to help focus the important things and help get all the other stuff into perspective.

welcome to the site…

ellie

Quick question, what do you eat for lunch? I know that if I eat the wrong things for lunch then I get the afternoon crash around 2-3pm which can knock me out for hours. Just a thought, Lisa

hi nero

once you have the doctor’s certificate for your boss, you should ask about Access to Work.

these people will work with your boss to make adjustments for you.

fatigue is the absolute pits, we all agree.

carole x

It doesn’t really matter what I eat for lunch or if I eat at all :frowning: It can be quite random, some days it’s eariler, some later, and then there are those lucky rare odd ones where it doesn’t even happen ^^

I haven’t yet gotten an appointment with the hospital here that handles MS, they were supposed to send me one according to my GP though. But I might call them up if they don’t do it soon enough.

And yeah, fatigue is the darndest thing, been able to work around it so far but… bit short out of luck right now.

Hi Nero, I’m in Edinburgh too. I recommend googling the ms nurses edinburgh, give them a call - you have to leave a message on their answer machine - tell them which GP you registered with and how difficult you’re finding work/life at the moment because of your MS symptoms. Leave a contact number and I’m sure they’ll call you back in the following day or two. I had very similar symptoms - working all day was miserable, miserable and soul-destroying because I was just SO tired. I’ve had to cut right back on work, but I’m feeling a lot better now so will hopefully be back to full time work in the New Year. I suspect Copaxone has helped my fatigue most, but there are several other medications you can try, and I’d also recommend trying something like Berocca Boost in the late morning/lunchtime. Hope this helps!

Hello and welcome! Oh dear, i had the exact sane thing way back… Could only describe it like someone had literally unplugged my battery supply… Fatigue at its worse , could fall asleep mid sentance and spent most if my time either sleeping or trying to stay awake in the chair i couldnt get out of. My saviour? Was a drug called modafinil … I was on these for ages and took two a day as the effect of then last 4-6 hours… Deffinatly got me thro a very bad time. And know many who use them. I still have them and these days just take when and if needed… Which thankfully isnt that iften these days. The drug is actually prescribed for people with narcolepsy … Heard some dr’s wint prescribe as tec not used for ms . However your neuro is the one to adk if your dr is not helpfull. Really hope you are able to get thro this time… I know just how much it effects ones life… And hard to explain to others who think its just that you are tired!!! Nope! Times that by 400 and they may be getting close! Lol … Very best wishes and is deff worth a try! Take care Sarah xxxx