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Fatigue is slowly killing me!

Hello all,

Sorry for the dramatic title but I’m starting to believe it is true.

Ok so just a brief intro of me - I’m 23, diagnosed in April 2016 (omg it’s already been a year) with RRMS and have been on Tysabri since August 2016. The Tysabri has been brilliant in that I have not suffered a relapse since. Although, I have just had confirmation recently that I have optic neuritis but I’ve had this before and it is currently mild.

My real issue is the fatigue. I feel like I’m running out of ways to deal with it and its affecting me in a big way.

I currently work full time but I get so tired during the day that I can’t concentrate and feel like I have to sleep right there and then. Everything just feels really heavy as well, especially my arms. I am currently on sick leave. I have told my manger (and gp who provided the sick note) that this is because of the optic neuritis but in reality this is because I’m exhausted and need a break for 2 weeks.

Since being home, I feel like all I have done is slept. e.g. yesterday, I went out in the morning came home at 12 and slept until 4pm. And even when I woke up, I was still tired.

I’m supposed to be starting my masters in September part-time while working full time. This has been planned since last year but as the days go on, I’m seeing it as being less of a possibility which has been really depressing. This has also made me scared for the future in general as I don’t know how it will continue to affect me.

I know that fatigue is very common for people with MS so I thought I’d post on here to get some ideas on how others deal with it. Literally, anything would help I think (this includes medication).

Also, if you are currently on Tysabri or another DMT, have you felt this has helped with fatigue?

Many thanks in advance,

Nora :slight_smile:

Hi Nora, the only drug specifically for fatigue i have tried is amantidine. It worsened my constipation, so i stopped it.

The best thing is to pace your activities and get good quality sleep, if you can.

But extra sleep isn’t really helping, is it?

At 23 you’d expect to be living the life and burning the candle etc…But no, life has taken a different turn for you.

As you say working full time and starting a Master’s part time, is going to be very difficult.

I wonder if you could speak to an advisor at the college.

I’m sure this kind of query has been seen by them several times.

If they can guide you, life may not seem so impossible after all.

Good luck.

Polls x

Hi there Noraxyz, and welcome to the forum.

A dramatic title? Well yes, but you’re just describing how you feel, and a lot of us on here will recognise that feeling immediately; fatigue is a real problem for many MSers.

My neuro has recently prescribed me Amantadine, which I’ve only just started, so it’s a bit early to report on. Others on here swear by Modafinil, but I believe that’s a difficult one to get hold of. There may well be other drugs, but those seem to be the most common.

I’m sure a few other forum member will soon be along to share their experiences.

Best of luck

Ben

Don’t give up on the Masters - if you have problems once you’ve started you need to talk to someone at the college and my guess is they will be very supportive and suggest ways to help.

If it proves too difficult then you will at least have given it a good shot.

There is much to be said for a bulldog spirit and a relentless determination.

But equally, you will likely benefit from a sensitivity to adaptation.

This is not to say life’s dreams are to be thrown on the scrap heap, but ‘slow and steady wins the race’ et cetera…

Thanks a lot for all your responses!

Re the Amantadine or Modafinil, I’ve never heard of either but will look up I think, then maybe ask my GP or Neuro.

I think talking to the University is probably a good idea considering the circumstances, I’m sure they’re good with these sorts of things. Krakowian, you’re right. Better for me to give it a go and fail rather than have ‘what if?’ moments from not trying at all.

And your right about pacing myself, I think I sometimes I forget I actually have MS and attempt to do everything at once which is never helpful. One year on and still trying to get used to it.

I’ve also realised that heat makes everything worse. When it became hot in England this last weekend, I felt horrible. So, definitely not looking forward to summer which is a first!

Nora :slight_smile:

Nora,

I completely endorse all the comments above. Waking up tired really sucks. You do need to listen to your body and pick your battles carefully. You will over time become more aware of triggers and limits so you will be equipped to plan or prepare a bit. The one thing I always bang on about with fatigue is try not to get angry or frustrated because this wastes your valuable energy and you need to keep whatever energy you have for stuff you want to do.

When I was on Tysabri I needed to have some energy in the bank because the efforts involved in getting to & through the infusions were energy intensive for me.

All the best

Mick

Nora,

Best to ask your neurologist about Modafinil. Your GP will almost certainly refuse to prescribe it. Your neuro might do too. It used to be quite easy to get on prescription from a neurologist. It was strictly speaking prescribed ‘off label’ as it’s designed for narcolepsy, not fatigue. It’s an excellent drug and definitely superior to Amantadine. But there were some scare stories about heart problems which has meant many neurologists won’t prescribe it. Stupid really, since people who are already on it can continue.

The other thing is to practice fatigue management. This means essentially not doing too much in one go. Pacing yourself. Have a look at the MS Trust info: https://www.mstrust.org.uk/a-z/fatigue

It becomes second nature eventually, not to do anything to excess, whether it’s work or studying of housework etc. Try to organise yourself so that you don’t get overtired. A deep trough of fatigue is very hard to dig your way out of.

Sue

I feel so ill when tired that I’ve had to give up my part time beloved job. I can’t stand up for long. The resulting cognitive fatigue feels like I’m dying. I get dizzy and feel as though I’m split into two people, one there and another floating just off to my right. I can’t think or be aware of what’s going on around me. This is tough in the middle of a concert. It’s the standing up that gets me. I can’t sing and stand now.(for now). I hope this will improve with a few months rest and targeted exercise. If I can no longer be a professional chorister, the grief will be very hard to bear.bloody ms. I hate it.

Well done on getting to do a Masters! Excellent achievement.

Fatigue is my worst symptom. I’m 35 and had to go part time in my job role as the hours were too much. Could this be an option? I’ve tried both Amantadine & Modafinil- unfortunately both had the adverse affect. So far what is working for me is simple pacing. If I know I’m doing something on a weekend, I’ll have a free weekend each side. Afternoon naps, not trying to clean the house in one go, seeing friends for lunch rather than later in the day. It takes a while to even start knowing your limit, I’m 3 years diagnosed and still finding my feet :slight_smile: Good luck xx

Yes, you are right about asking my GP. She usually sends me to my MS Nurse anyway. I see my neurologist in July so will ask him then if things don’t improve.

And, thanks for the link, very helpful!

Nora x

Thanks all for the advice. much appreciated.

Nora :slight_smile:

Yep, 05.43 a.m. and been awake since 3 a.m. but tired! No sleep needed, just exhausted bones and such like waking up wondering what the heck they are supposed to be doing. Waiting for the big pills to kick in now so hopefully they will work, failing that I have a nice book waiting that will fill my time till my muscles/bones decide if it is going to be a good day or plan b is needed. At least I get to hear the blackbirds singing nice and early. Its a bit like being in a maze, you never know which path you are on till you try to get up, going in, going out, completely lost or going arse about backwards!

Have you spoken in advance to the Masters tutors? I would say that you would have to be very organised and set up a network once you begin. I used to support students at Uni (by phone) who had very varied illnesses, they would get in touch with any support tutors/specialist tutors who were involved at degree level where they were studying and let them know straight away that they may have periods of illness. The good ones helped them set up a network of studying buddies, email contacts and linked them in to lots of students who would assist during illness. This meant bringing any copies of paperwork, assuring that they knew about deadlines in advance, agreeing deadline changes if in hospital with a Doctor’s letter, this kind of thing. There was a mentor also who would advise who had already passed the course. Even down to arranging wake up calls and eating reminders so that they didn’t oversleep when ill. Some had to have permission to have an extended exam time and permission to take drinks and food in, to keep their levels up with agreed extra loo breaks. Communication is key, they want you to succeed so I would suggest being very clear about letting them know how brill you are and how a little bit of help will make a massive difference for those times when you need it. I don’t know what you feel like the majority of the time, but if you have to go away anywhere on weekends or things like that, if it was me I would have to sleep and rest completely physically for at least two days beforehand and probably a day after, to be able to cope with the extra travel and change of activity. It might be different for you but I would say consider energy and coping levels for anything like this so plan carefully in advance.

Balance is the key, hard thing when your brain still says off you go and your body is a little bit behind. What are you studying?

Hi everyone!

although anxiety and fatigue continue to be the bane of my life, I’ve now started with frequent spasms and muscle/joint aches and pains. as soon as I’m tired I get them and I also wake up with stiff fingers and feet. I cannot exercise physically or mentally without triggering fatigue but I do stretching and non weight bearing exercise , I also eat an ms diet as far as possible to stop me putting on more weight but I’ve not been able to shed the three stone I put on with pregabalin three years ago! Neuro says I’m still rrms even though I don’t have proper defined relapses, I do go back to normal for a few hours a day until the fatigue kicks in.

im wondering if there’s something else going on, like fibro or thyroid or chronic anxiety and would appreciate any comment or advice from you guys. How do you tell the difference? I’m taking 50mg pregabalin twice daily and modafinil 100mg twice daily. I have 2mg diazepam to take when the spasms are really painful, like the hug etc but most of the time they’re dull and nipping rather than stabbing and pressured.

Thanks for reading folks X

Sorry! Not been on here for ages and think I’ve put this in wrong place. Should have started a new thread! Durrrr

I’ve just had seven days of constant fatigue after daring to enjoy myself meeting old friends. The long train journeys involved didn’t help.

Strangely enough I’ve been doing some physio once a week and it’s helped. But I’ve missed the last two because of easter and I’ve felt it. It might not work for you as you work full time.

I had to stop working but I’m an old codger.

Don’t give up. Any goals, no matter how big or small will help.

Best wishes, Steve

Thanks so much for the detailed advice. I totally agree with all of it. I actually do have to spend my days resting/sleeping on the weekends in order for me to start again on the Monday so still trying to figure out how I will fit my studies in around that.

I will inform the University definitely, there’s no way I will be able to go in to every lecture with my cognition fully intact. I do hope the University has a good support system in place for disabled students, I know it would make life a lot easier.

I will be studying Bioethics.

Thanks again for your comment!

N xx

I am 36 yrs old, was diagnosed with RRMS in January 2015 and started Avonex in Jan 2016. I work full time.

I suffer from terrible fatigue, so much now that it’s affecting my ability to do my job and I am making mistakes. I work with sensitive data, high volumes of work at certain points in the year and also a lot of data throughout the week. The fatigue is affecting me now so that I am making mistakes at work, not to mention feeling wiped out every day.

My fatigue isn’t just physical (e.g. taking forever to climb stairs due to a lack of energy), but mental, which I feel is worse. I feel mentally tired, like my brain is totally fried and find it really difficult to concentrate. Also I make mistakes or garble my words. I also get 1-2 days side effects from the Avonex, which is annoying and makes me feel 20x worse.

I have been on a fatigue management course and know that I could take regular rest breaks etc. at work, but I really think that I am going to have to go back to my work’s Occupational Health therapist to try and put some formal things in place, such as institute the rest breaks formally. There is also something called Access to Work where you can get a taxi into work (instead of long commute) and have the money reimbursed. Keeping cool is also meant to help, but I think this helps with general fatigue. No matter how lovely the ambient temperature is at work, when I am faced with having to think very quickly on my feet, multi-task, sort through data and quickly fire off emails, I get wiped out very quickly and intensely.

I am really annoyed about it all. So far my managers have not picked up on my mistakes, but I can’t keep on like this. I line manage one other person and she can see when I make mistakes. I am really worried as I don’t want to give up work nor do I particularly wish to cut hours down.

I am going to start taking a multi-vitamin pill and also see my GP about fatigue-medication (Modafinilo or Amantadine, whichever they think is best, or whichever they can give me). Or I guess I should ask my GP whether I might be lacking in any of the B-vitamins which can affect energy levels.

MS is annoying (particularly when everyone thinks you must be fine because you look OK on the outside).

Sorry, I am 39 yrs old, not 36!

I eventually had to leave my job after repeatedly going to sick leave, I’m 25 and haven’t worked in 3 years now, fatigue is horrible although I exercise a lot I don’t think I could find a job as I have and good day or 2 followed by a bad week. MS sure knows how to strike