Morning Everyone,
I hope everyone is well in the cold and snow!
Can anyone help me?
I am slowly returning to work on a phased in basis after an acute relapse in October which led to the discovery of my newly diagnosed MS - I am working from home a few hours a day from a single screen laptop. The problem is, after working for a while I get dizzy, nauseous and my head starts to feel very heavy. There is also the fatigue, but I hope that I will be able to manage that a little better.
I was wondering if anyone else had those symptoms on their return to work and whether they go or am I being optimistic about my return to work?
Also, a huge thank you to MS nurses – I had my initial appointment this week and she was a God send! She was so lovely and kind, it was a good opportunity to download.
Best wishes and hope everyone has a good weekend.
S
hello
you sound quite positive and that’s good.
fatigue is the worst symptom ever because nobody can see it.
stop worrying about how it appears to other people.
when you go back to office based work make arrangements for regular breaks as and when you need them.
if the dizziness and nausea continue, maybe a brisk walk outside could help, try it as you are working from home.
make sure you are drinking enough water too.
good luck
carole x
(Maybe leave the brisk walk till the snow clears!)
Otherwise, Carole is quite right, make sure work are fully aware of your fatigue levels. Take breaks from work. In a way this is even more important when you’re working from home. The temptation is to go flat out for several hours. Make sure you stop every so often, do something else while drinking a cup of coffee. Think about the pattern of work while you’re in your work environment; you stop and chat about what you did last night, what you’re doing over the weekend, or just to pass the time of day with someone.
Sue
Thank you Sue and Carole, your help is really appreciated.
I am trying to stay positive, although that is easier said than done as I am sure you all know.
My main concern at the moment is that the fatigue is such that when I get tired I am very slow and cannot move very far at all. In some cases I cannot move at all. I really don’t know how to combat that, although I am trying. My walking is limited in so far as when I do go for a walk I am very slow anyway, but as I get to the end my legs feel like they are stuck together and dragging. Afterwards I am so tired I just collapse at home and rest until I feel I have recharged my batteries as such. Sorry for the in depth description but I don’t know what the term is medically.
I am currently waiting for a further scan to see if there is any progression, after which my neurologist will refer for DMT’s - well that is the plan. I am being seen by a physio next week and I have had some deep tissue massages during the last two months.
I guess I am at the beginning of this journey and I am not sure whether all these symptoms will stay or whether they will go away in time.
Thanks for all your help.
Have a good weekend.
S
It is a long learning curve, discovering not only the facts about MS, but (possibly more important) your new ‘normal’.
You will find that relapses can take a very long time to recover from. The nerves which have been inflamed during the relapse may recover, and some may not. But those nerves that don’t completely recover, can in time, be compensated for maybe other neural pathways.
This means that a relapse in October, may be finished with in terms of inflammation by November, but the nerves can take several months to get back to some sort of ‘normal’. This may not be the same as in say September, but eventually you will find that it becomes like normal.
With regard to DMDs, have a look at MS Decisions aid | MS Trust You won’t have completely free choice of all the drugs (and completely ignore Zymbrata, it’s been withdrawn from the market today, thankfully), it will depend on your disease severity as well as what is set up in your prescribing centre.
When you see your neurologist, talk about fatigue as well as DMDs. There are ways to manage your fatigue level. See Fatigue | MS Trust As well as drugs that can help.
And take life easy as much as you can. Your body is still getting used to MS. Your life will have changed because of it, but there are lots of ways in which you can minimise it’s impact. The physiotherapist will help I’m sure.
Sue
Thank you Sue.
It is really good to have a forum and people whom I can talk to.
It is all a steep learning curve, but I think I am getting there very slowly 
Have a lovely day and best wishes,
S