I was diagnosed RRMS nearly 3 years ago. My symptoms have been manageable til around this summer, with me leading a near normal life including working full time. This summer just gone I suffered two small flare ups of my current symptoms probably triggered by stress and these kept me off work for a couple of weeks. Then in early January, so a month ago, whilst on holiday, i suffered a big relapse with new symptoms, including an MS hug which scared me to death as I thought I was having a heart attack.
The relapse is still on with my legs feeling really weak like jelly and fatigue having become extreme and relentless. I have been home for a month now resting and waiting for the relapse to fade away. I am scheduled to have an MRI scan of the spine and I am praying it will show no new lesions. I am not sure what the trigger of the relapse may be but one possibility is stress again. All I know is that I am now unable to work til it settles and wondering what the future holds and if I should reconsider my working life for my own good and that of my loved ones. I have fabulous support at work which has been of great help whilst this is happening but I am trying to understand what will be best for me in the future, especially because MS is now making it impossible to keep on working as before which sadly may mean also not working. The thought of having to stop working because of MS is fairly scary and I could do with some advice from anyone on what best to do.
It sounds like there is a lot going on and you are feeling understandably worried about what the future holds and whether youāll be able to keep working.
I wondered if you take any MS treatment or wether youād consider it?
There are some very effective disease modifying treatments around now which massively reduce the risk of relapses and reduce the severity of them If they do occur.
Thereās every possibility that you can keep working and living a full life.
I hope your MRI gives your doctor (and you) some more information to go on. I know more lesions would be worrying - I imagine itās the last thing you want to hear - but it might also mean you are eligible for one of the new very effective treatments.
I hope your neurologist is helpful. And remember your MS nurse is there to help too.
When I was first diagnosed a few months ago, i rang the MS Society helpline. The chap on the end of the phone was lovely and didnāt mind me crying at him. And it helped to get my feelings out. They can also share lots of information and talk things through with you.
Sending a gentle shoulder squeeze if youād like one.
Hi @emi_vad You twice mention stress as a likely cause of your difficulties. Do you know what caused you to feel stressed and if so are there things you can do to remove or turn down the cause. Similarly, have you looked at any methods for dealing with stress and associated anxiety? These might include antidepressants/ anxiety tablets, or self help sessions on e.g meditation, mindfulness.
Thank you for the reply and the virtual hug. I have been on Kesimpta for nearly a year now and the support from MS nurses and all hospital staff has been fab from the start and I have another call about the relapse with an MS nurse tomorrow. I am conscious that there may be occasions where the DMT may not stop a relapse but minimises its impact and so I am confident I am on a good path notwithstanding the current circumstances ā¦ but I am worried about MS progression and that my body is clearly telling me it needs help and to slow down. Finding a balance between work and life is starting to become so important but also not easy, I know i can continue to have a full life with MS but I know that I need to find a way of working that does not take life away which at the moment feels it is mission impossible.
Like you I found lot of support through the MS Society from the early stages of my diagnosis and am so sorry you are going trough the same journey, it has been emotionally draining but also reminded me what to value in life which is probably why this relapse is causing me all the thinking and worry about work and life in general. I have dear friend in France who has MS and I have reached out to him in the early days for advice based on his experience and he is now working only in the mornings. Maybe going part-time may be an answer to help continue to have a full life but of course it is not always possible and it is easier said than done. I know that I need to make a decision but also to not rush into it. This conversation with you is also helping me in my thinking so thank you for spending time to read and reply.
I had left a message to the MS Society helpline about it last week and will call them as I know I am not in the right state of mind to make a decision right now.
I hope you are finding ways of making your MS journey as smooth as possible, it has some positives as I have started to really appreciate little things that I took for granted and put others into a different perspective. Tank you again for the virtual hug, a hug itās a great gift, one size fits all and itās easy to exchange.
Hi @Hank_Dogs than you for your message. itās a combination of things, the constant worries with MS and having a job that I love but that requires significant stamina and emotional energy and resilience and which eats fast into my limited energy. I have always worried about things and have always had high level of anxiety. Last October after a flare up I had a very useful session with a Neuropsychologist to go through this and I have started looking at ways of trying to deal with my anxiety and worries. As an option I have been prescribed by my GP antidepressants butI have so far decided not to use them as I really want to try and find the right balance and deal woth the trigger rather than using a medication as a fix ā¦ easier said than done and at the moment if feels like a mission impossible
Oh crumbs, you sound so much like me at work, and Iām afraid that is not a good thing in any way, shape or form!
I found it very difficult from early on to bring the level of energy and resilience and cognitive grip that I needed to function well at work, and the anxiety was awful. I really feel for you. Sorry, thatās not terribly helpful is it? But at least you know youāre not the only one.
A couple of points occurred to me, firstly please donāt discount the happy pills - you need all the help you can get at the moment. When youāre feeling overwhelmed, they can give you a bit of headspace to think more clearly and clear thinking is always a good thing. Secondly, donāt assume that youāre always going to feel as bad as this. Getting on a treatment that damps down your MS satisfactory can be a big help. Finally part-time working but might be a good idea, but donāt jump into anything that involves a permanent change to your contract - that can have big implications for your income your pension and all of that. Itās one of those decisions that you want to make in tranquility rather than in a rush.
Hi @emi_vad . I do agree with @alison100 - donāt discount the antidepressant/ anxiety tablets! Iāve been on Citalopram for years : 25 mg a day. Sometimes I reduce the dosage and I quite often forget to take a tablet. Other than reducing anxiety/symptoms of depression Iām not at all aware of any other effects and so far as is possible with MS I carry on with life as normal. In case you donāt know then feeling stressed and anxious is definitely bad for MS and apart from making symptoms a lot more noticeable can lead to further relapses and associated complications and long term irreversible disabilities.
Hi @emi_vad Just to add that Iāve been re-looking at stress/anxiety and MS in particular the relationship between stress/anxiety and inflammation. Long term stress/anxiety or short periods of acute stress/ anxiety do increase general levels of āinflammationā in the bodyās chemistry. Raised inflammation can and does cause all sorts of problems : digestive problems, skin problems joint problems , general levels of energy etc etc and yes MS problems ! Inflammation of the brain and rest of central nervous system will make existing MS symptoms a lot worse as the immune system gears up to combat a perceived threat . Sustained inflammation is very likely to lead to further lesions .
Donāt let yourself fall into a vicious circle in which anxiety inflames your existing MS symptoms including tiredness and fatigue, which in turn makes you feel more anxious/stressed causing more tiredness etc etc etc.
if it were me I would definitely take some antidepressants/anxiety meds and then consider what to do long term about work etc. Giving up work now might not be the answer and might leave you wondering about money, losing a sense of purpose, friends at work etc
@alison100 yes it is pretty hard and I guess if I am often in a denial state of mind, pushing hard and pretending allis ok and I can get through though it really is not. I hate feeling this way and not being able to perform as I know I should be able to in normal circumstances ā¦ it helps to know I am not the only one so thank you fpr spending time to read and reply ā¦. I perhaps should not discount the antidepressants as @Hank_Dogs as rightly point out will help avoid bigger problems and a deterioration of my MS which right now is a big worry. And yes on work I am not going to rush into making any decisions especially until I have had the scheduled MRI which will tell what is happening and if there are new lesions. right now i could do with some true peace of mind as it will truly help x
@Hank_Dogs thank you so much for all that you have said. I am sadly far to aware that anxiety and stress may lead to relapses or, at best, the existing MS symptoms getting worse and for poentially long periods. Have you found that the antidepressants help you with anxiety and stress triggered by high pressure at work? I do care about doing things right, personally and professionally, and of the consequences that may come down to not being able to perform and am not sure antidepressant will make things easier but if they do I surely need to consider them. I love what I do and especially that ot comes with a sense of purpose as you said and folks around me and that is why I know a part-time\reduced hours may provide the balance I need, comes at a cost as @alison100 pointed out but anything I can and should do to feel better I k ow I should. I will likely speak to the GP again about the antidepressants and get a new prescription. Thank you again for all you said, it truly helps
Dealing with having MS is always a work-in-progress. As soon as youāve got your head around one thing it does, and adjusted your life and plans accordingly, it does something else. And all the time thereās the background anxiety about what that next something else might be, and the one after that. This is a very energy-intensive process, it seems to me. No wonder we struggled with fatigue on account of that non-stop cognitive load, quite apart from the direct impacts on our energies of the disease process itself. As they say in the US, itās a lot. Please try to be kind to yourself. None of this is your fault. Not being the person at work that you were is not your fault.
Hi there @emi_vad . Long reply but I hope it is of help:
Some back ground : I will be 72 in a few months and I retired from work perhaps 14 years ago for MS related reasons. The organisation I worked for was wanting to downsize a bit and produced a fairly generous āvoluntary redundancy/ severance ā scheme which included contributions to the pension scheme and would give me a good pension. MS wise I was OK and able to work pretty well with responsibility for some large Scotland wide higher education projects and budgets; working with the Scottish Government on some national projects and representing our organisation and Scottish higher education on Europe wide projects. I enjoyed the work a lot but not wanting to risk the possibility that MS relapses might mean that I would no longer be able to work and I wouldnāt be able to make the most of enjoying retirement I applied for and took the package.
Anxiety wise and MS: I was diagnosed some 5-6 years before retirement/ voluntary severance . I had witnessed what MS did to my Aunt and although her experience was in the days before any Disease Modifying drugs I became seriously anxious about ending up like her and used to get panic attacks ( I became fearful of being ātrappedā e.g in a dentist chair , a train carriage , an aeroplane seat or a ācommittee meetingā for which I always had to find a seat near the door! ). So- I went on Citalopram which most certainly made a big difference and allowed me to carry on enjoying success at work.
Could I have managed without Citalopram? Probably not : I expect I would have been totally miserable and constantly worn out/ tired to the point where I would need to give up work. So - Iām most definitely glad I went on Citalopram and was able to carry on enjoying success at work, living without anxiety and perhaps because of that, without any relapses or worsening of symptoms!
@Hank_Dogs thank you so much for the long reply, it does help to understand how Citalopram helped you and put it in context. You have given me plenty that helps me reconsider antidepressants as they will clearly help even beyond working. I am glad you had the opportunity to stop earlier on. Like yourself I have had a long working life already and have been lucky to travel around the world doing something I love. Stopping now is 5 years ahead of what I had planned to and would be a hard option financially and beyond but like you were at that time I am really worried what the consequences may be if I donāt find a way of easing the pressure off and must find a way to cut back a lot perhaps without stopping ā¦ but stop if this cannot be done. wish me good luck and thank you for all yours replies, they help a lot.
Hi I am having a similar issue and have taken a step away from work to concentrate on my health. I was diagnosed with RRMS in the summer of 2020 and have been on a DMD since that time. I did find that I was stressed at work and found myself upset on a number of occasions which in turn affected my sleeping pattern and following advice from my MS nurse I am now off sick as she was keen to ānip it in the budā as doing nothing would be much worse for me 6 months down the line. My ms nurse has been great and has signposted me to an nhs silver cloud cbt training online course as well as a local MS charity who offer a wide variety of support. I donāt plan to be off long term but I do think itās important that I concentrate on my health as I was worried that I could relapse if I didnāt go off sick as I know stress is not good for MS. I think itās important for us all to take all the support available to us and if necessary step away from work, whilst this might feel difficult we need to put our health first.
Hi @LM20 I am glad I am not the only one going through the same journey. I am worried for the same reasons and donāt want to end up in a much worse condition in a short period of time. The MS nurses have been brilliant and I have now a relapse clinic face to face with one of the neurologists scheduled in a week time and MRI scan ā¦ I am just hoping the latter will show no new lesions but I have now read a lot about PIRA, progression independent of relapse activity, which may also explain what I am going though at the moment, either way it has been hard but resting for this past 6 weeks has helped. I am booked for ātalking therapiesā run near where we live and will consider CBT too. How long did you stay off-work and how much did it help you? and when back what did you do to better manage your fatigue and anxiety? my sleeping pattern is really bad and my fatifue is probably even more relentless because of that and so I am now seriously considering antidepressants as also suggested by other patients and I have asked my GP for a prescription but she rightly suggested I speak with the doctors of the MS team at the hospital when I go for the relapse clinic next week. I just wish everything went back to normal but I know it is just a dream.
Hi, not yet back at work. This is week 3 and my fit note expires on Sunday. My GP said that this can be extended so I will re assess towards the end of the week. Iām just taking time to concentrate on myself and my sleeping pattern is still up and down but do worry that the same pattern will develop when I go back to work.
Hi, I hope will help and you will find a way. I have been so worried these past few weeks about everything that like yourself I am just trying concentrate on myself and what is best for me and consequentially also for my loved ones and in fact especially for them. wishing you the very best in your journey
As you say, take your time, you donāt have to rush into anything. The right thing to do will become clearer in time.
