Last reply 6 months ago
How do you know relapse or day to day?

Hi All,

I am currently CIS diagnosis, searching for a pro active neuro…. but that’s another story!

One of the biggest challenges I am experiencing is understanding what is “normal” in terms of day to day living with MS or a relapse/signs things are worsening and need addressing.

I have been making slow but steady progress getting stronger legs with lessening burning nerve pain and pins and needles over the last two months. This was until I walked for about 30 minutes yesterday and drove for an hour – the most I have managed since my attack landed me in a and e…

Today it feels like I have gone many steps back and the burning nerve in my feet and legs is back. Is this normal? Because I pushed myself ? Or have I caused damage ? Or more damage is here and it’s just a coincidence I had a semi active day yesterday ?

Other day to day symptoms I experience sometimes for a few minute, hours and disappear and then come back days apart include – dizziness, facial tingles, arm and hand feeling like I have held onto something really tight and then let go.

Thanks in advance for your help!

I don’t know who to contact as I don’t have access to an ms nurse or anything yet…

Casey

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stumbler
6 months ago

@caseyxo , there’s a few questions that you raise.

First of all, you exceptionally active day, and the aftermath the next day. We can use the “Spoons Theory” to illustrate what’s going on here :-

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

When symptoms re-occur, we refer to this as your “body talking to you”. Basically, your body is telling you that you’ve done something that your CIS/MS doesn’t like. You may be over-tired, so it may be worthwhile slowing down a bit.

Here are a couple of links for you. The first gives you details of CIS. The second covers a good definition of what is and isn’t a relapse:-

https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis
https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms

I hope this helps.


caseyxo
6 months ago

@stumbler thank you, the spoon theory is something I haven’t heard of before!

I think this new way of life is very hard 🙁

Thank you

Casey


stumbler
6 months ago

@caseyxo , this new way of life is different and you will adapt.

Life without MS goes through various changes as we age. We evolve to survive, so be patient with yourself. 😉

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