MS deconditioning/progression

[AyoadesChinDimple]

I'm in my 40s and had RRMS around 5 years (more likely to be 15 years according to my neurologist)

I'm on a DMT and not had MRI for about 2 years. I'm also on HRT.

I'm currently struggling with weakness, fatigue, joint pains etc which are all getting worse and causing me problems daily.

My nurse says it could be progressing MS but could also be deconditioning as I can't exercise much apart from short walks.

Does anyone have a similar story? did anything help?

Hi, didn’t want to read and run. I also have MS (although haven’t had it for as long) in my early 40s, and am on DMT.

I can completely empathise with your symptoms, it’s so hard isn’t it :( I experience weakness, pain, numbness, tingling and fatigue daily.

I’ve been working with support from a neurophysio to find exercises I can manage which will hopefully minimise deconditioning, like you I can’t walk far so instead I spend 30 mins 3x a week on a static exercise bike I have set up at home, my legs still ache a similar amount but hopefully doing regular exercise (and I also make sure to eat good amounts of protein) will minimise or slow muscle deconditioning. Is that something you might explore? I like the bike as I can start off slow and stop whenever I like - and I’m already safe at home 😊

Could you ask your MS nurse for a neurophysio referral? Mine was on the NHS and really helpful and supportive.

Good luck