Would like to hear how people remain positive with ms. I was diagnosed in November with my first clinical attack and my life has stopped. I think I have had another relapse between then and now and have just had a second MRI, I’m due for an appointment with the neuro on the 7th. The pain is very hard to deal with, I seem to start doing small things and the pain at night then is awful so I stop again. I’ve started amtripalym but I am only managing 1/4 of a tablet as I got itchy with more. The ms nurse just tells me to do more and work through it. Every day something is playing up and I can’t seem to get negative thoughts out of my head as I can’t see this ever getting better. I seem to have had a bad first attack compared to others that’s going on and on and am expecting more bad news at the appointment next week. How do you all remain positive and get on with living life when the more you do the more pain and fatigue you get. I really need some positive thoughts as I can’t find them myself. Thanks
Just re read what I have written and its sounds like a real moan, so I apologise. I could really just do with tips on staying positive and any tips on dealing with this.
hi zoe i have had cis for 3 yrs but recently went into a bad relapse over the 3 yrs i just said to myself as long as im able and can do things i will not let it get me down and this seems to work with me, my kids know what is happening as well as they would have been wondering what was going on with mums body doing funny things so over 3 yrs everyone has spoke about and had some giggles aswell as we cant really do nothing about it just enjoy what you have at this time and moment dont think how things could turn out as this might not happen
the relapse im going through just now has went for over a month and still dont feel as though it going anywhere anytime soon its very draining on the body but i hope i just wake up one day and its away again
hope this helps
The honest answer is that I am positive when in remission, but when in the midst of a relapse, all my fears come to the fore - I start catastrophising, get very down, believe I will never get better, etc. It’s only when I manage to remind myself that this is a relapse, that previous relapses have always gone into remission and I’ve always managed to cope with residual symptoms, that I realise that it could be very much worse and that, whatever happens, I’ll be OK. That helps me to start climbing out of the hole that relapses can cause.
Relapses vary in intensity and they are often more frequent in the early years, but it is not the case that bad relapses always mean a bad prognosis. For example, I have a friend who had a terrible second attack - she was completely unable to walk (both legs affected) and spent weeks having daily physio in hospital once things settled enough, literally learning to walk again. Twenty years later, my friend can walk for miles and miles!
One thing that helps massively to stay positive is the right meds. So since you are not getting on with amitriptyline, why not ask for something else, e.g. gabapentin or pregabalin? These will probably cause short-term side effects too, but if you can persevere, most people find them very effective for neuropathic pain.
As I’ve said before, I disagree with your MS nurse. It sounds like you are still in relapse, in which case pushing yourself is just about the opposite of what works for me (and everyone else I know with MS)! If you had the flu or appendicitis or some other “normal” illness, a medic would tell you to rest. The same goes with a relapse. Your body is busy fighting inflammation - don’t deprive it of much needed energy and resources! Eat healthily, keep well hydrated, but most of all, REST! When you are feeling up to it, try some exercise or doing the sort of stuff you do normally, but do not overdo it - stop before you get tired and gradually build it up as your body recovers from the relapse.
Finally, staying positive gets easier - as we learn to cope with symptoms and what does and doesn’t help us, get on the right meds, know that we’ve got better before so there’s no reason why we can’t get better this time, get a better support network in place, etc. We learn that, whatever happens, we’ll cope.
This is NOT the voice of experience talking, but I do sympathise with the “positive thinking” question. I’m suspecting bad to middling news on Monday for my follow up.
For me - I’m concerned most about the whole “living in fear” thing. Living in fear of that 2nd attack. I’ve had optic neuritis in the left eye, i’ve been lucky it was very very mild - but it’s left it’s mark. If I were to get it again or in the right eye, I could lose my driving license etc, that is quite a fear for most people to deal with I think.
If the news is grim on Monday, I intened to seek out some counselling to help me get through it. It’s not for everybody, but my view has been whatever it takes. I am desperate the remain positive and I’m determined that I don’t want to turn into a “victim”. I want to have the attitude that I will just “crack on” - but it’s difficult, because I dont’ feel like that now, just scared and fearful.
It’s certainly something that I’d consider. Like I said, it’s not for everybody, but I myself am a fan.
I understand you well, how all this is scaring the hell out of you.
But it really is still very early days for you…only a couple of months or so, since you heard you have something which would scare anyone!
Learning to live with MS takes a while. I wonder if you have a close friend or family memeber who you could confide in? Sounds like your MS nurse isn`t much of a listener, sadly.
There are courses run for the newly diagnosed. Would it help if you joined one? Thing is, it is probably your MS nurse who can tell you about these. But if it was me, I would ask.
You also need to be put on meds which will help you. We know we have to manage our pains and symptoms, but there are lots of meds to help with that.
Now about staying positve hun…people tell me I have a positive attitude which has helped them when they are struggling.
I think a lot of it comes from the fact that I have always been a bubbly, cheerful type. But even I have my down days too…who wouldn`t when their lives as they knew them, have been flipped so harshly?
I think coming on here for support, advice and even a vent, when things are getting on top of us, helps enormously.
Hope things improve for you. Dont ever feel the need to apologise for your posts, we all know how it feels.