Hi, I was dx last June, I had a bad relaspe in nov got 3 days iv steroids by Christmas I had started to pick up and my swallowing difficulties had subsided, but in January my close uncle passed away very quickly and this caused me stress, then I’m having problems with gynae issues so now on hrt and have bowel troubles - the thing is I have been so bad with pain esp leg pain at night and totally exhausted every day do you think it’s cause I have had so many different things going on ??or am I still recovering from relaspe ? Today has been best so far this yr do hoping I have turned a corner. Any advice wud be very much appreciated. Thxs kel
I was only dx in nov after a major cin in June followed my comfirmation relapse in November. Then relapsed again Xmas and another just now. I had a pretty good January but feb I’m going at a snails pace again. Never bloomin ending. Are you on any medication baclofen pregabilin and Amitripiline do def help me at night. I ran out of pregabilin in November and I literally seize and wake up in agony had no sleep for 3 nights had my relapse the following week and the added Amitripiline and it def does help. Now if I could get something to ease pain through the day I’d be happier. Hope you start to feel better soon Emx
Hi Thank you for your reply yes I’m on copaxone, plus I take ampytripline, baclofen and 2 30/500co cod every night otherwise I wudnt get sleep. Sorry to hear you have had a rough time too recently it’s so rubbish and esp when brain wants to do loads of thinks but body does not respond lol - I keep thinking I have accepted dx but then sometimes I haven’t and just want to do things the way I used too trying to manage capabilities on a day to day basis is so hard!
Sorry you’re feeling rubbish. No doubt the combination of recovering from the relapse & all the other stuff will be taking its toll on your health. CBT may help (ask your GP to be referred), and I find practising mindfulness meditation regularly really helps me with things like stress.
And I know what you mean about accepting it. It’s been 11 years since my diagnosis, and mostly I’ve accepted it & come to terms with it,but then of course there’s times when I wish I could do what I used to. I’ve found that I’ve experienced all the classic stages of grief - denial, bargaining, anger, depression, acceptance etc - but it’s not like I’ve just gone through them all once in order. I can revisit them all, especially when new symptoms come along or existing ones feel worse. No doubt it will be a recurring circle for the rest of my life : ) But if I am feeling low with it, I remind myself that I’ve got through it before, so I’ll get through it again.
I second Em and Dan. I hope that you have continued to feel a bit brighter and that things are going in the right direction for you. It is just draining when there are so many things going wrong. I hope that you can find a good balance of medication to deal with the things that can be dealt with, and give yourself a chance to regroup and heal.
Hi I was dx a year ago in October following a relapse which hit me like a train. Looking back now I was still suffering in May the following year so therefore I believe I didn’t fully come out of that relapse for maybe nine months so yes I think it’s possible you’re still recovering from the relapse that started in November. On a positive note it does get better. Although I’m not completely back to where I was pre relapse I’m reasonably close. I’ve had to accept I’ll never run again and I can’t walk the distances I used to able to but otherwise I’m living a fairly normal life. Long May it continue! A M
Thank you all x