Forum

Extreme fatigue

I am struggling with extreme fatigue which has been getting worse for a while now. It is both physical and mental.

I am dragging myself out of bed at about 10am every day and sometimes by the time i hae made a drink i am ready to go back to bed again. My physio has agreed this is an existence and not a life.

I am excessively sleepy and have awful brain fog so can’t think straight most of the time.

On better days i still struggle to function and just drag my heavy body around the house. I am sure this fatigue is having a negative impact on my other symptoms, mainly mobility, balance and vision.

Anyone else experiencing this level of fatigue on a daily basis ?

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Experience it now and again. Today for certain.

Are you on any dmds for your ms and if you are, how long for? I’d have a chat with your ms nurse if you have one.

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Taking LDN, thats all, for the past 8yrs. No ms nurse available.

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Lisar

sorry to hear that you are suffering this huge fatigue. I have not had to cope with that level for ages, but I remember what it is like to feel a sense of achievement when I managed to feed the cat! I empathise and sympathise with how you feel. I agree with Poppy6488 I would talk to my MS nurse to see if there are tools or techniques or drugs that might help.

Sorry I can not offer any tangible help. I hope you feel better soon.

Mick

I’ve been off work for coming up to two weeks because of fatigue. I’ve had a couple of days of getting up to eat and that’s it. I’ve tried amantadine before but it made me worse if anything. My MS Nurse has just told me to rest, do stuff when I can. Cabin fever has been kicking in but I managed 20mins fresh air today.

I hope you start to perk up soon, it can be pretty grim can’t it!?

L xx

Hi lisar (and Star1981)

Have either of you tried any drugs for your fatigue? The best one is Modafinil, but that can be rather difficult to get a prescription for, so the one you could try is Amantadine. Ask your neurologist for advice on that.

Also, are you managing the fatigue effectively? Fatigue management is all about breaking tasks down into small bits. Don’t do too much in one go. Basically, MS fatigue is not something you can just ‘push’ through. You need to look at what you’re doing, hat is essential and what can be left. Have a look on the MS Trust publications: https://support.mstrust.org.uk/shop

And rest regularly. You need to look after yourself.

Sue

Thanks Sue. I had got a bit of a handle of it, but been supporting my husband through cancer treatment these past few months and I think physically & emotionally I’m drained. Taking time off work was definitely needed in my case xx

Yes, ‘grim’ is the word ! Don’t feel like i’m on this planet, spent most of the past 2 wks in bed.

Unfortunately i don’t have an MS nurse- cutbacks.

Lets hope this dreadful fatigue goes on holiday soon :slight_smile:

Lisa ~

Thanks Mick

have employed all the pacing strategies etc,etc as per the physios advice but as she says you need to have a certain amount of energy to be able to do this in the first place. Unfortunately i don’t have an MS nurse.

Lisa ~

Thanks Sue

been trying to get an appointment with my neuro, just can’t get past his secretary, she just told me to see my GP. Unfortunately my GP is about as useful as a chocolate teapot, he doesn’t know anything about MS and isn’t interested in finding out. I don’t have an MS nurse.

I have tried all the pacing strategies to manage the fatigue but don’t have the energy to pace at the moment.

So for now its rest, sleep, rest,sleep and sleep a bit more !

Lisa~

Lisa,

Unfortunately it sounds like the only way forward is to make a fuss. When it becomes less of an annoyance to listen and help us rather than fobbing us off they might just help. I know you will not have the energy so you need to ask a friend or family member to hassle the secretary or neurologist. Keep bugging them and explain that a little bit of support now might save significant NHS resources in the medium or long term. in my experience there is little point in hassling your GP. but your neurologist will be able to marshal the appropriate resources. No one needs to be rude just assertive (easier said than done)

Good luck

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I get it now and again but I have never kept a diary. I did go through a bout of monstrous fatigue at the end of 2012 just at the time I was having severe absence seizures. Since then it has been on an off.

I know this doesn’t help you but I hope you get over it.

Anne x

It’s not easy to cope with this type of debilitating fatigue, I know how you feel. Need to feel well enough to be I’ll !

Not at all sure this is the answer to your problem, but I find exercise helps to break the cycle and do something positive.

Exercise to combat fatigue

Although not properly understood, weakness and fatigue in multiple sclerosis are thought to be caused by the poor transmission of messages by damaged nerves. Muscles that are not used regularly become weakened and require more energy to do tasks. This can lead to a cycle of decline, as an already weak muscle that is not used will become weakened further, a process known as atrophy. Regardless of MS, a lack of activity will lead to increased fatigue.

As muscle weakness in MS is due to problems with getting messages along the nerves rather than within the muscle itself, expending a great deal of energy by exercising to the point of exhaustion doesn’t help the problem and can make fatigue and weakness worse. Exercise that works on building up endurance and strength in muscles without increasing fatigue is considered beneficial.

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Yes exactly what my neuro physio said but at the moment she says she can’t exercise me as the fatigue is too extreme and would only make problems worse.

She has urged me to get an appt with my consultant but i can’t get past his secretary.

Happy days!

Thanks for your input though, much appreciated

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Thank you, i will keep trying

l keep the ‘fatigue’ at bay by taking loads of B Vits - and LDN. Vitamin B12 5,000mcg sublingual liquid. And l take Super Stress B Complex - Thiamine and Niacin. As well as Biotin and Vitd3 magnesium and VitK2.

Just google MS and B12 and MS and Thiamine etc.

My daughter has those energy boost drinks for when she goes to music festivals and is up all night dancing - [oh those were the days] l decided to try one - and was amazed at how ‘energised’ it did make me feel. When l looked at the list of contents it is not only high caffeine but high B Vits. Do not drink near bedtime as you would never sleep. This one is called Blue Spark - Tesco.

l do exercise as much as l can - try to keep moving. ln fact l hardly ever sit down all day.

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My suggestion is write to Neuro, keep a copy and explain that you would be extremely grateful to be given an app to discuss some new concerns. Works sometimes as the secretary is not so likely to be able to fob you off and should pass the letter to Neuro for reply. Good Luck.

Hi Lisa. From my previous experience working in hospital, address your letter to your consultant, making your content clear and brief, BUT…mark it “Personal”. It should get to him/her unopened and you might get a result.:slight_smile:

Hi Poppy and Elljay,

i have now spoken to an MS nurse ( first time in 15yrs since diagnosis ! ) and she has echoed the secretary saying there are no available appointments as they are now booking for 2018 !

She says i will have to wait until my scheduled appointment in June.

I asked for advice - none given. I asked about fatigue meds and she said they don’t work and GPS don’t lke to prescribe. i said i would still broach the subject with the neurologist as i am now desperate. She says that’s up to me.

I saw a different GP within the practice, she is going to write to my neurologist but said in her experience it won’t make any difference.

It seems like i will have to tough it out until June.