@beth26 

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beth26

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 😕
@Vixen

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! :-)

@ItsMewithMS

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. https://www.youtube.com/watch?v=fZPQ48N-nIs&t=75s 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 ;-)