Last reply 2 months ago
Tired of being tired

Having a flare up with all my old symptoms , been going on for the last month or so , have had 2 bouts of new symptoms since round 2 of lemtrada 15 months ago , no new lesions on my
Last mri
Just feeling pretty down about Feeling like I’m
Getting worse and struggling doing simple things
There are no major new symptoms , just lots of little bits wearing me down , not sure what else to try πŸ˜•

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vixen
2 months ago

Hi @beth26, I know exactly how you feel. My neurologist last month told me that every one of her patients has reported a worsening of symptoms since lockdown. I think we all struggle with a sense of normality anyway, let alone having a false sense of normal imposed on us. I’ve found that my symptoms seem worse when I’m not really doing anything; when I get distracted, I don’t seem to notice them so much. Like you. no new symptoms but I a finding it all really wearing and tiresome. No solutions I’m afraid, but lots of empathy! πŸ™‚


itsmewithms
2 months ago

Hi @beth26, my symptoms are often those that I am very familiar with. There is good and bad to that as I know how to combat them and work around them but they get a bit tedious and disheartening. I find they get worse if I am under stress or not getting enough sleep. I also need to keep my diet pretty clean and do my regular stretching and workout routines. It helps, somewhat, to avoid nasty heat and humidity.

The picture I have in mind is one from the model Dr Boster shows in videos, the “leaky pool” model. Basically I have impacted areas and if the water drops (my neurological reserves) they can rise above the surface of the water. I just have to keep my levels up to drive them under the surface.

It can get hard to manage as people say “wow, when is that going to get better” or even when my PT guy is expected to log “progress” or the MS nurse calls…they expect patients to “get better” when I only hope to not slide further down the hill. Maintenance is what I need to be happy with but I always fight for more.

Good luck – know the feeling πŸ˜‰


twiggy3
2 months ago

@beth26
This is just like me at the minute , no problems for 16yrs than all my old symptoms have come back with revenge. No new lesion on scan either. 5 weeks now of the pesky invaders but getting me down now so I know what you mean. I thought also I was getting worse but ms nurse says there has been an increase of suspected relapses at the moment so there is something in the air . Try to relax , they will go in time but we just don’t know when . Uncertainty another lovely symptom we get . Take care πŸ€—


beth26
2 months ago

Thanks all 😊
Had some bloods done today as new bruising which could be side effect from the Lemtrada ( or just being clumsy) Plus then they can check if there’s anything abnormal causing the issues
I work in a hospital and there have been so many changes due to covid it could just be stress related , and with that draining me I’ve been less able to cope with these little flair ups like I normally would . Just fed up of feeling rubbish about it πŸ™„


twiggy3
2 months ago

@beth26
I think sometimes we tend to push ourselves too hard ,I get quite stubborn as if I’m trying to prove I can still do things no matter how hard they are.Then sometimes we just havnt got the same strength to cope mentally and physically. I seem to have burned myself out this year like alot of people. Take care and take a deep breath and try to relax.


mayclaire
2 months ago

@beth26
I am completely with you on this. I was diagnosed 6 months ago with RRMS when my symptoms felt quite mild but with intermittent problems. Lately, probably for about 4 months I feel the symptoms have come back, but more constantly.

I’m wondering if, in addition to the stress caused by the current situation, the temperatures haven’t helped. I was definitely much worse when it was hottest.

@itsmewithms I love the ‘leaky pool’ model of MS.
All the extra ‘little’things can help you feel more in control. Whether it’s ensuring you get a decent amount of sleep, or watching what you eat.

Take care, you’re not on your own!


twiggy3
2 months ago

@beth26
Hi How are you doing ? Are you feeling a little stronger ?

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