@LoopyLu

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LoopyLu

Fatigue...invisible MS Symptom

Hi everyone, I was wondering if anyone else out there has fatigue as your main MS symptom and how you manage to cope with it? Since I was diagnosed in 2004 I have had problems with neuralgia, some skin numbness and bladder instability, but my main - and most debilitating - thing has been fatigue and I've had to have time off work due to this on a few occasions, each time lasting 2-3 months. I've been thinking for ages that I could do with a less stressful job but then maybe moving jobs/employers is not a great idea when my health (& sickness record!) isn't great. Any comments on this, particularly from people in similar situations would be good!

Stumbler

@Stumbler

@LoopyLu, you won't be alone in being frustrated by fatigue. My bugbear is physical fatigue. I call it physical fatigue as my brain can decide that my legs are too weak to hold my body weight, leading to a collapse to the floor - yet, physically, my legs aren't weak! Fatigue can be physical or mental. If it's the latter, have a word with your MS Nurse and see whether you can get Modafinil prescribed. They may want you to try Amantadine first though (cheaper?). These meds can improve mental fatigue. However, stress needs to be avoided if possible. Work-stress was responsible for leaving me in the situation I now find myself in. I've since retired and I'm now asking myself was it worth it. Your employers should take your MS into consideration and may take action to assist in your battle to address your fatigue. Have a look through this publication :- http://www.mstrust.org.uk/shop/product.jsp?prodid=246 Try not to let your employment stress you out. Regrettably, you are not indispensable, so if you have to be replaced, they will replace you. Now am I suggesting that they don't really care? Well, that's capitalism for you. Look after number one.

LoopyLu

@LoopyLu

Thanks Stumbler. Its mostly mental fatigue but it also makes me clumsy and feel like I'm walking through mud at its worst. Work are aware but I don't think my manager knows what she can do to help either - today's suggestion is to use some of my annual leave so that I can work shorter days or shorter weeks until the weather gets better so I'll probably try that - trouble with that is trying to do 4 days work in only 2 or 3 days though so isn't long term solution! I started amantadine last September - I'm not really sure that it's working though and got my GP to increase dose today. Neurologist wanted me to try that before he prescribed modafinil so I'll give it a bit longer at new dose and if still no better get back in touch with MS Nurse. Like everyone else with it I find it so hard to get colleagues to understand that it's not just 'tiredness' because I've been doing too much. I feel like such an incompetent fraud! Thanks for the link though I'll give that a read. Lucy

Stumbler

@Stumbler

Amantadine was a dead loss for me and I'm looking to "engineer" a prescription for Modafinil. I think that would be more suitable. Modafinil has been used by Uni students to help them keep up, whilst burning the candle at every end! As for your colleagues, get them to read this:- https://shift.ms/topic/describing-your-ms-symptoms/ :)

JasFromTas

@JasFromTas

I feel so blessed at the moment that Amantadine works for me! I really notice it the days I don't take it (my Neurologist recommended only 5 days a week, because you can get tolerant to it, apparently). LoopyLu, fatigue (mental) was a huge symptom for me, and for the 2 months prior to my other symptoms of the first CIS (incontinence, walking funny, numb hands/feet) I had been to my GP MULTIPLE times complaining of being 'tired'. He was completely unsympathetic, and told me I was overdoing it (who? me?) - he may have been right, but nothing I was doing had changed for years, and the extreme tiredness was new. I only work part time now (was 80-100 hr fortnight before), and my work rosters me so that I usually only work one day at a time - so that I get a 'recovery' day in between. This has be fabulous. I cannot say enough what a difference it has made. I am now the queen of budgeting (and I know working part time will not be enough $$ for everyone), but I feel almost human again. Getting a work-life-MS balance is so totally integral to managing my fatigue! And don't EVER feel like a fraud! MS fatigue is TOTALLY different to 'feeling tired'. It is on par with that hideous exhaustion you get when you have the flu. I tell my friends this, but they can not imaging being that tired ALL the time. Or how much effort it takes just to exist. But don't let them belittle it or make you feel inadequate. YOU know how you feel. NOT them! Must stop talking. xxJas

LoopyLu

@LoopyLu

Thanks Stumbler for the link re colleagues - some really good ways to explain how some of the symptoms feel and I particularly like the one for fatigue. My colleagues are all nurses like me so I just expect them to know about MS symptoms etc but I guess no one really knows unless they're an MSer themselves. Hi Jas thanks for your post - it's good that amantadine is working for you - I'm going to give it another couple of weeks at 200mg/day and if no improvement then I'll ring the MS Nurse to discuss modafinil again. Stupidly, one of the possible side effects of vesicare is fatigue - seems like a no win situation sometimes!! The alterations you've made to your work sound good - I know I'm my own worst enemy at work so need to be more disciplined with myself & stop working over my hours every day and then maybe I'll find it more manageable! Thanks for your comments about me feeling like a fraud too - I need to kick that feeling into touch I know! It's good to talk to people who know first hand what I'm talking about - thank you both Lucy

Rhymenocerous

@Rhymenocerous

Hi LoopyLu, I'm actually going through a similar time to you, I've been working for 3 years but have had to both take off 2-3 months each year and afterwards reduce my working day by an hour each time. I've been off again for 2 months since Sept last year (2013) and am currently only working 2-3 hours on a 'return to work' scheme - I am VERY lucky in having a very progressive employer and a very understanding manager. I recently attended a Fatigue Management Course (recommended) which my MS got me onto - definitely worth enquiring. I did learn that doing a 'boom-bust' cycle continually will cause your fatigue to get worse and worse....which matches what has happened to me. As such, and because my fatigue has gotten really bad the last few months, I decided to take a new look at things. I'm going to list a few things that have helped my a lot, but I'm not sure what your working day is like or what you do for a living / whether you are also considering a career change etc. so am happy to give more advice or go into more detail, just give me a shout. I work in computing and found that the following things helped me: In terms of Access to Work scheme and Reasonable Adjustments, 1. work from home (last year I worked from home 1-2 days a week, with one of these days mid-week, which made a MASSIVE difference 2. reduced my working hours and made sure I was getting DLA to make up for the lost income and keep me afloat (fill out the forms as if it is on your worst day - as all MS nurses, society etc. will tell you - i.e. cannot get out of bed / leave the house / get grocerys in for food etc.) 3. A room where I can shut my eyes at lunchtime, or indeed any time where I need to recharge my batteries Other things that are helping: 1. Pacing - I'm currently filling out a fatigue diary and have reduced how much I do per day in order to get my baseline (idea is that you get to a schedule where you can repeat the same the next few days without any exarcerbation of fatigue or symptoms, and then you start increasing activity). This is in conjunction with the rest periods which I do as (1) mindfulness / meditation (see next point) and a 1 hr proper sleep at lunchtime. I'd highly recommend getting hold of a book on Chronic Fatigue Syndrome to understand how to cope with it and also handle the symptoms much better so you are more in control, it is more predictable, and you can work around it. Let me know and I can suggest one or two. Plodding along long-distance rather than a sprint run in the day is a good metaphor :) 2. Mindfulness to combat the massive impact stress has - I've always been a fast, 'manic' type of worker, trying to get loads done. I've recently realised that my work STYLE seems to have a massive impact on my health. It is to do with your stress levels...not in terms of feeling panicky, just having lots of things whirring around in my head. It turns out that even 'good' stress has an effect on your health. And it also turns out, with good research backing this, that you can 'alter' the structure of your brain by simple mindfulness techniques to work with a lower stress level and heightened sense of calm, creativity etc. I am a physicist, so not into alternative therapies etc. so I can assure you that (i) I've done my research and (2) it is already making a big impact on my fatigue. If you're interested, I can recommend an online app for exercises, plus books that I'd highly recommend reading. 3. I've thought about getting a cleaner in, so as when I'm not working I can have good quality rest at home rather than my usual always-on-my-feet mode! 4. automatic rather than a manual car - I was astonished how much difference this made to me 5. cut out gluten - apart from some people being intolerant and it therefore putting an extra strain on your immune system (this goes for lactose, legumes etc. if you want to investigate), it also is well known to cause tiredness anyway as it takes a long time to digest, so I've cut it out. 6. smaller meals throughout the day rather than 3 large meals I hope that helps. I'm not sure whether I will keep working (I'm hoping to get to 3-4 hours a day and maintain that with this damaging boom-bust cycle)

LoopyLu

@LoopyLu

Hi @Rhymenocerus, thanks for your reply and telling me some of the things that work for you. I'm going to try and be more assertive at work and work from home at least one day a week - have got a meeting with my manager on Wednesday so will discuss it with her. I work in a small but busy, stressful office with people in and out all day including me, and I am sure the lack of calm does have a negative effect on my fatigue and cognitive function. I'm definitely interested in useful books and the app that you mention - I really want to try and get this under control so I don't need to reduce my hours at work - I can't imagine that I would get DLA as I'm not as bad as a lot of people so want to try and maintain my income independently for now at least. Mindfulness certainly seems to be something that a lot of people are recommending at the moment, and doesn't seem to be viewed as an 'alternative' therapy which I am always a bit sceptical about (I'm a nurse) so I will definitely look into that too. I also need to wake up and realise that if I don't look after myself at work no one else is going to do it for me, so back in the office tomorrow with a new set of rules for myself! I'm glad you've got a good employer and are doing a phased return to work - I did that and it certainly helped me. I think I do the boom/bust thing with work like you - I just keep going / finishing late etc until I hit a brick wall and then I'm good for nothing - it's taking me a long time to learn my lesson but hopefully this time I have. Good luck with your hours and getting 'fatigue free'.

LoopyLu

@LoopyLu

Hi @agate, Although I'm not my own boss, leaving the office with some things undone is something that I need to learn to do - supposed to finish at half four but rarely leave until half five or six and I know this doesn't help my fatigue at all surprisingly!

mschronic

@mschronic

I'm so glad that someone put this topic up because I am also having major problems with fatigue at work. I sometimes have to lie down for about three hours just to get back into the mode of it. I am seriously considering talking to my employer about what we can do to make things work but I'm scared at the same time because I don't want them to cut my pay. I have medication for my epilepsy and other illnesses that I have to pay for plus other things that take a huge bite out of my salary. I don't know what to do and I feel stuck. I was taking Provigil for the fatigue but they seem to have run out of it nationwide and I can't take the other option that my neurologist recommended because it may cause seizures and I'm epileptic. I feel like my body is working against me all the time and I really hate it when people say 'Oh you're tired' because that's not what it is. Fatigue is no joke...

Rhymenocerous

@Rhymenocerous

Hi LoopyLu, Sounds like you already have an idea of what you can do to start with - definitely don't do more than the hours you're paid for! It's tricky because a lot of work culture out there expects you to do this all the time, but you're not paid for it, and nor is it sustainable in the long term, especially for us, so it's counter-productive. Not that I'm saying it's easy, I'm still learning to stop when I should as it's a habit of a lifetime! but if you make some rules for yourself and congratulate yourself when you stick to them and notice the difference, you'll get there :) Look after yourself and you'll be a more solid and reliable worker in the long term - a good point to make to your manager if you need to. Also, if you feel that you're not able to do the same amount of work from day to day, struggling to get things done by the afternoon because your fatigue is bad and feel like you're drowning, I'd highly recommend to stop fighting it and reduce your hours temporarily whilst practicing more 'scheduling' of work and rest periods until your body finds your baseline again and you can SLOWLY increase your work again. In terms of the app and books I mentioned: - http://www.getsomeheadspace.com/ - you get the 'Take 10' downloads for free to start you off :) - Chronic Fatigue Syndrome (The Facts) by Frankie Campling and MIchael Sharpe (2nd Ed) http://www.amazon.co.uk/gp/product/0199233160/ref=oh_details_o02_s00_i00?ie=UTF8&psc=1 Recommended on NHS Prescription so is a good 'un - Mindfulness for Busy People: Turning from Frantic and Frazzled into Calm and Composed by Dr Michael Sinclair, Dr Josie Seydel - AMAZING book for making sure you give yourself space and take care of yourself....helps you to 'work smart' too! - Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing by Vidyamala Burch and Dr Danny Penman - I've started reading this book and found it both fascinating and encouraging. Hope that helps! Best Wishes x

Rhymenocerous

@Rhymenocerous

Hi mschronic, I'd definitely recommend that you and LoopyLu do look into DLA - fatigue is also a disability, it's just a very hard one for people to understand. If you have periods in the day where you are fatigued so that you can't get out of bed, walk to the shops for your grocerys, can't concentrate on your full working day etc., then do make a claim. Your MS nurses can help you to fill it out and they'd encourage you to do this - you need to fill it out as if you are on your worst day. I didn't apply for ages even though my MS friends would tell me to, because I felt guilty...but then consider this - if getting DLA money means that you can drop your hours at work, then you will be able to stay contributing to society via work, paying taxes etc. - if you do not get this money, you won't decrease your hours which means you will then be more ill and unable to do your day-to-day activities, possibly leading to taking medical retirement and reliant solely on benefits. That's how I see things. I don't know about you, but I find dealing with fatigue so hard because I have guilt associated with it...but then think about what I used to do without a thought, and I can then see that it IS a disability that limits me substantially every single day. Best Wishes, Mel x

LoopyLu

@LoopyLu

Hi mschronic, really sorry to hear you're struggling with fatigue and work at the moment too. I would definitely speak to your employer about your hours - do you have a good occupational health department where you work? I would request to see them if you can to discuss your concerns - I found my occ health dept very helpful in the past in recommending changes to my manager to try and help me manage my working day better. Unfortunately at the moment I'm struggling again so my manager is trying to help support me in planning my weeks and using my remaining annual leave as effectively as possible to try and manage the health/work balance better. Good luck with work and let me know how you get on, Lucy

LoopyLu

@LoopyLu

Hi Rhymenoceros Thanks loads for the book details - I like the sound of 'mindfulness for busy people....' So will definitely be buying that one. I've downloaded the 'getsomeheadspace' app and have done the Day 1 meditation which was really good - I'm hoping I'll be able to do it at work next week too - should be able to find a quiet empty space for ten minutes! Thanks for the information about DLA too - I didn't know you could still work part time and receive it too - that makes me feel good because now I know that I won't have to choose between working/not working at all, but that I could potentially reduce my hours without getting into a financial mess! Thank you! Lucy

Graham100

@Graham100

Hi people, I was given modafinil right from the start, had to stop taking it because I broke out in a rash all over my body, bloody typical I'm allergic to the best stuff. Lol

cameron

@cameron

If you do go for DLA (now PIP), I recommend you first sign up for the Benefits and Work forum, because you'll need support to make the application and the site is excellent. You've clearly got grounds for applying, but as you probably know, the govt is doing its damnedest to reduce what it spends on disability support. I read recently that two thirds of new applications for PIP are being refused. So if you decide to apply, please don't allow yourself to get stressed by the unfairness of what may be the outcome. xx

loulou

@loulou

Re: earlier comment, was intrigued as to what a type A personality was...... Home › Personality Theories › Type A Type A Personality by Saul McLeod published 2011 This type of personality concerns how people respond to stress. Type A individuals tend to be very competitive and self-critical. They strive toward goals without feeling a sense of joy in their efforts or accomplishments. Inter-related with this is the presence of a significant life imbalance. This is characterized by a high work involvement. Type A individuals are easily ‘wound up’ and tend to overreact. They also tend to have high blood pressure (hypertension). Type A personalities experience a constant sense of urgency: Type A people seem to be in a constant struggle against the clock. Often, they quickly become impatient with delays and unproductive time, schedule commitments too tightly, and try to do more than one thing at a time, such as reading while eating or watching television. Type A individuals tend to be easily aroused to anger or hostility, which they may or may not express overtly. This appear to be the main factor linked to heart disease.