Does anybody else find their mood unintentionally changes or how they communicate is just not as effective? In April I began Gilenya and since then I’ve noticed things. My mood changes drastically and how I communicate can often be confusing to others which frustrates me. I suffered what my nurse detailed as an exasperation as a result of recent hot weather but I now have lasting symptoms of numbness. Things generally have been going well but I can’t help shake a dark feeling, I’m generally unhappy but can’t show it, or talk about it because people just don’t understand. I sometimes feel like I’m losing it and I don’t know whether it’s that I’ve avoided my dealing with my diagnosis for nearly 3yrs. I’ve just tried to carry on and ignore it (other than acknowledging I need Meds everyday). I’m more anxious and overthink more than I have, I struggle to shut off and don’t know how to admit it to others because I feel it shows I’m not strong - and that’s not how I was raised. Does anyone ever get like this? I’m just struggling.
Wow - I could have written this myself! Aside from being 2 years since diagnosis not 3. I’ve been on sertraline (antidepressant) for about 18 months - they definitely did the job at the time but I’m now slowly coming off it after discussing with my ms nurse. I feel that it dimmed down ALL of my emotions and I felt a bit robotic. I can resonate with everything you’ve said about the mood changes, it’s bloody hard isn’t it. I find it’s hard as I don’t know if it’s me being paranoid or if I really am coming across different.
Please feel free to message me if you want to talk. You aren’t alone xx
Oh yes indeedy… i have had serious problems with my mood and communication. I mean one thing but it comes out differently from what I intended to express! This is why I prefer communicating by email or on forums such as this, as I need to give my stupid brain a few seconds to catch up and get in gear. I have adopted the motto “It’s better to keep your mouth shut and be thought of as an idiot… than to open it and remove all doubt!”
Dunno if it was the site, me, or my computer, but it wouldn’t let me on yesterday; however, doesn’t seem to be a problem this morning.
All you m.s. issues have rolled into one and you’re bogged down - try to seperate things. Finish these sentences - My biggest problem with having m.s. is ……… Another aspect of having m.s. which bothers me is…… and so on. You will then identify specific issues - e.g. you may feel your biggest problem is that you have no support from anyone. and another problem may be that you feel unhappy. Identifying them may not make it easier to resolve them but at lest you know what the issues are.
…Morning PM.
Moods are pretty common in MS, and emotional issues.
the weather gave me an exacerbation of my symptoms too, it wiped me out i couldn’t be bothered with anything or anyone, and found communicating hard work.
I don’t think you have accepted your diagnosis yet yes you are sort of dealing with it like you would a headache, take a tablet, etc etc, but you have not accepted you have it.
You need to share how you feel. Have you a partner or a special friend who you could really talk too? we all need that special person that we can rant and rave at about our illness. No one understands how we feel i think we even find it hard ourselves. but you have made the first step which is good.
Being strong is a curse. I am a strong person too a mighty roaring Leo (well more like soft roar now lol), and people just assume i can cope i cant. I lay at night and cry and rant to myself. I upset people as i seem to have lost the capacity to filter out words i would never use and upset people now when i would never have done that.
with my husband i seemed to always have been saying i am sorry to him i didn’t mean that etc. I find things exasperating, i hate noise it triggers emotions off, and i hate bright lights.
Dont be too hard on yourself, if you feel your having a bad day, tell your friends or family. You are entitled to be having a bad day.
If you had the flu, would you not feel like rubbish and irritable, having MS is a bit like that.it is certainly worse with the changes in atmosphere around us, humidity kills me, heat i hate. I love the cold and cant wait for the winter, i am different then. I can walk better and not so much fatigue.
TALK to your friends and family, tell them how you feel. You have started here now you need to tell them too.
Just because you are strong, doesn’t mean you cant have emotions or be frightened. its not a sign of weakness.
hugs. x
As the recent symptoms started after taking Gilenya perhaps they are a result of taking it.
Jan x
I’ve been taking Gilenya for years with no adverse effects, so I checked the advisory leaflet for known side effects. Depression is listed, so if you feel this is a serious issue you should tell your neurologist and stop taking it. There are other treatments, it just might take some time to find the right one for you.