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Told to stop taking Avonex and get mental health assessed

I’ve been told to stop taking Avonex because my MS nurse, and consultant, are concerned about my mental health. I’ve got mixed feelings about this because I liked the once-a-week aspect of Avonex, and don’t get any physical side effects. I said a couple of things about my self-esteem that obviously ticked a box saying ‘stop immediately!’

Though initially I felt certain that it wasn’t causing me any problems, and blamed my ‘stress’ on work, I’m starting to realise that I have been feeling very anxious a lot of the time (even when I ‘know’ I’m in control), and I’ve been getting more paranoid. I’ve always been prone to this sort of thinking (though I’m good at being cheerful too!), and so I think I’ve been coping with it getting gradually worse, thinking it was part of the MS package, and that I must try harder to get over it.

I’ve been trying so hard to be a ‘good girl’ and cope ‘bravely’ on the surface, while underneath I am frightened that I’m going to suddenly stop coping and then I can’t imagine where I’d be. Work has been very busy so I’ve had that to blame it on.

And I’ve been increasingly self-medicating with booze and painkillers, to help me calm down. Sometimes I feel that I just can’t cope without ‘something’ to switch off part of my brain. No dangerous quantities yet but it is starting to worry me.

So I’ve got a consultants appt in two weeks, where I guess he’ll suggest I try something else - Copaxone? I don’t get the feeling my symptoms are bad enough to warrant one of the newer drugs, though I will ask.

I’d be really interested to hear if anyone else has had a similar experience - if not, it’s very good just to be able to share my thoughts with you all.

xxx

Hi, I wasn’t allowed to take Avonex or rebif as I have a history of anxiety and depression. I inject Copaxone daily which works well for me. From what you are saying I would say you have some clear warning signs that’s things just aren’t quite right. Self medicating, not coping like you should, these are all signs that your mental health “could” be spiralling downwards. If I was you I would make sure to tell everything to the consultant and be as honest as you can be. Trust me, you don’t want to end up having a mental breakdown. I got to that point a few years ago and it took me a LONG time to get better (I was off work for 14 months). I don’t want to alarm you but I feel it necessary to stress how important your mental health is. Good luck x

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Hi Becca

I really feel for how you’re feeling. Many of us, myself included, want to avoid feelings that are unpleasant. It’s not helped by the fact that we Brits think that we should always keep a stiff upper lip & not feel, let alone display, any emotions. ‘Keep calm & carry on’, and all that. Of course, that can be an incredibly unhealthy & destructive way to deal with things. Bottling things up & suppressing them doesn’t make them go away - they’re still there, increasing in pressure and will start to leak out somehow, probably by causing us to get ill or behave in a destructive way.

However, just by writing this post shows you’re starting to acknowledge & let out what you’re feeling. Keep doing it! I know it will feel horrible at first, and it may even feel scary if the emotions come out strongly. That’s not surprising - being diagnosed with MS can be extremely traumatic. But in the long run it will be better out than in, so find safe ways you can share & process your feelings - talking to loved ones or a counsellor, keeping a journal, posting on here, or just having a good ol’ kick & scream (if you don’t want to shock the neighbours, something I’ve done before is to get my pillow & yell into it, so it masks the noise).

Something else I can recommend is mindfulness meditation. If you don’t know anything about it, at it’s heart mindfulness is just about noticing what’s happening in the moment, for example what your breathing feels like, what you can hear or smell etc, or what your feeling physically or emotionally, or what your thoughts are. But you notice it without making any judgement of it - you don’t label it as good or bad, or wish it would go away. I know that sounds like it would be horrible to do - simply noticing & acknowledging your feelings, without wishing it would go away & without doing anything to change it, probably feels like it would be torture. When I started doing it a few years ago, that’s exactly what I thought. But the weird thing is, it does actually help. By accepting things instead of trying to avoid or change them, you begin to find peace. My emotional well-being definitely improved as a result. It’s really helped me with pain management too.

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Thanks for your helpful, thoughtful comments :slight_smile: I have heard of mindfulness meditation but your suggestions have me start looking into it - the Headspace app looks really good, and I’m having a go at the 10-day starter course.

I’ve had quite a lot of talking therapy (much of it to address the ‘funny’ physical feelings’ that were deemed to have a psychological cause. My nagging sense that something just wasn’t right was diagnosed as obsessive compulsive disorder at one point. Turns out that something wasn’t right and the strange bouts of weakness and buzzing were MS!) I have had very effective treatment for post traumatic stress disorder (hmm, ok, maybe I should have mentioned that when choosing Avonex) and was told then that mindfulness was the next step to maintain a calmer brand of thinking. I’m pursuing that now, thanks to your advice - I’ll let you know how I get on.

Wishing you a restful Sunday night, and a good week ahead.

Bec

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