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Any Advice Welcome :)

Hello,

I was diagnosed in December after having my first official relapse & have been experiencing some day to day symptoms…however this weekend I was hit with extreme fatigue after having a busy day shopping. I thought I knew what tiredness & fatigue was until now! My body felt like it was weighed down by something & I wasn’t able to move how I normally do.

In light of this I have some questions…

It feels like now that I have the diagnosis, all of these different things are suddenly starting to happen to me….why didn’t I feel them happen before I was diagnosed?

I think I thought I would feel ‘normal’ in between relapses and symptoms would only occur during these times…why is this not the case & why did I not feel any of the ‘day to day’ symptoms before?

Does it have anything to do with increased damage to the myelin sheath from the relapse and this is why I didn’t have any symptoms before my relapse.

My partner & I are both confused by this… Are the symptoms in my head? Am I imagining it & in turn making it happen because I know it’s a possibility?

I apologise to go off on one & I’m sorry if this doesn’t make any sense.

I would really appreciate any advice on this.

Thank you. x

When I was first diagnosed I started to notice symptoms as well. Looking back on it I had those symptoms for years (vertigo, urinary urgency/incontinence, neuropathic pain, spasticity). From my experience this disease is about symptom and relapse management. My MS is now Secondary Progressive so all that can be done is symptom management…

Hope this helps

its only been a few months since your dx so it’s no wonder that you are experiencing some confusion about what is happening to you. I have never been RR so I’m not really sure about periods of remission but what I have gathered from reading here - it’s a bit like everything else, everyone is different. Some people recover totally and have periods of normality but most would say that remission does not mean symptom free. Fatigue is one of those little gifts that keep on giving. I know from my own experience that I had many years with few symptoms but fatigue was always there.

Thinking that “it’s all in your head” is very common. It is possible to imagine/dream up symptoms but highly unlikely. The fatigue that you have described sounds exactly right. It can hit you like a wrecking ball and weighed down is just how I feel. As though my arms and legs are just too heavy to move.

It will take some time to get your head round living with this but you will. It doesn’t mean you have to get all precious about it and take to the chaise but just be aware that a long day of shopping might not be the best thing. You will adapt, lots of coffee stops used to do it for me, and a proper sit down lunch to recharge my batteries. It’s not about stopping anything just adapting how you do it

Jane

Hello hun. Like the others have said, fatigue can be a major part of MS…any type…whether in a relapse or not.

The best advice I can offer is to say that you need to pace your activities. If you are working, factor that in to trips out of the house too.

Plan for rest times and get as much as possible.

As for imagining symptoms…I doubt that…perhaps you are just listening more closely to your body.

You are still in early days since your diagnosis. You and your chap are still getting used to this uninvited guest barging into your lives.

But, with good support, a helpful MS nurse/neuro, and remember the physiotherapists and OTs, are there too. They have been of great help to me in adapting my life.

I dont have MS, but was wrongly diagnosed with it for many years. I have a similar condition.

Look after yourself hun.

luv Pollyxx

Hi,

I think it’s probably a combination of things.

Understandably, most people are diagnosed at a time of peak disease activity (they wouldn’t have been seeking a diagnosis if the disease was not causing noticeable problems) - so the chances are, you’ve been diagnosed at a point things were becoming more serious and harder to dismiss, anyway.

But then there’s the psychological element too. Now you know you’re ill, things you might quite happily have dismissed as age/stress/hormones/minor injury etc. in the past suddenly take on a sinister significance.

So it might be that yes, you ARE worse - people don’t get diagnosed when they’re doing great, as a rule - but also that now your attention’s been drawn to it, you’re noticing symptoms that could have been there quite a while, but you used to be able to kid yourself they were nothing. That gets harder once you know the truth.

It’s the biggest myth going that people with RRMS only have symptoms during relapses, and should be “completely fine” the rest of the time. That may be true of a small but lucky minority, especially early in the disease, but most people experience some residual symptoms, even when they’re not relapsing.

RRMS is still a progressive illness, believe it or not. Unfortunately, it doesn’t mean you have a relapse, get over it, and everything’s back to perfect working order again. Quite often, things will not go back to exactly how they were before. 90% or better, if you’re lucky, but still just a little bit down on what they used to be.

Sorry to be the bearer of bad tidings.

Tina

x