Hi everyone. I’m fairly new to the site and haven’t posted before. It’s been great being able to see the discussions and I really appreciate all the advice and support you give each other. I had my first lesion in 2017 - it was on the optic nerve - which badly affected my eye site for about 6 weeks. Luckily, there was no real permanent damage though I do get a bit of the old ‘unanchored to the world’ swinging feeling if I turn round too fast even now. I was diagnosed with CIS and encouraged to live my life as if it would never happen again. Good and bad advice because fatigue became something I really had to factor into my life - every 6 months or so I’d get 2 weeks of fatigue that floored me. As a self-employed person, the unpredictability of it all is tough. I found that I didn’t consider myself as someone ‘with MS’ so I sort of ignored these as symptoms as something I had to deal with and felt a bit of a fraud when I acknowledged how tired I was.
Just before Christmas 2020 I had right sided numbness as well as facial numbness. The MS nurse suspected a new lesion and the neurologist agreed. After the MRI in January 2021, it was confirmed that I’d had 2 lesions and I was re-diagnosed as RRMS. It was all a bit of a shock and, though I’m doing ok, I think it’ll take some processing. I know I’m lucky as it’s still relatively early stages and there’s no permanent damage so I’m counting my (secular) blessings. I realised over this week, though, that I haven’t spoken to anyone with MS about this. I speak to my husband who is very supportive and I’ve mentioned it in a work context but I haven’t spoken to anyone with a shared experience and I think I need that. Maybe it’s lockdown and Covid and the way the world is as well but I can’t shake the fatigue. I’ve pared work down to one job a week and I’ve taken time out of the postgrad studies I’m doing. But, the fatigue feels never ending.
I started on Tecfidera about 6 weeks ago. I admit I was more scared of that than the numbness to begin with because the side effects sound awful! But, I’ve been really lucky. No gastric issues at all and the spectacular sunburn of the 2nd (full dose) week has reduced to a little facial heat/reddening but even that isn’t every day. The only thing I’m noticing is that I’m bloated and have put on a bit of weight. I’m hopeful that will pass and, now that I know how to take the Tecfidera, I won’t eat as much at mealtimes. I’m dealing with the menopause at the same time and finally have the HRT stabilised that has been a bit of a battle for the past year so - as I’ve said - I’m feeling lucky.
But, the fatigue. It’s endless and, weirdly, I can’t sleep either. I’m getting bouts of insomnia where I’m awake till morning and catching 4 or 5 hours of sleep to get me through the day. I’ve tried to keep up physical exercise (I weight train with a PT once a week and jog a couple of times) but it’s been hard to do anything other than shower and dress some days. I’m used to being a busy person. I have a 12 year old and a lovely husband and I run my own small business as well as do part time academic study and I’m used to managing my work/life balance but I can’t seem to climb out of this fatigue hole. I find I’m putting psychological pressure on myself to ‘be recovered’ by now. The lesions happened 3 + months ago and I suppose I’m reaching out to ask if that’s enough time to recover or will it take longer? Does having 2 lesions at a time make the fatigue harder to recover from? I know that it took a full year to feel fully recovered from the first lesion but, and this is probably naive and a bit daft, because these latest lesions were sensory and didn’t cause the extreme disruption of the optic nerve lesion, I feel as if I should be ‘better’ by now.
Any advice or experiences you can share would be really useful. If you’re on Tecfidera and have experienced the insomnia and bloating and weigh gain - I’d love to hear tips for combatting that. If you have any advice on post-episode fatigue or experience of how long it took to reduce, that would be great to know too. If you just want to say hello, I’d really welcome that as well.