Do/have you reacted differently to your symptoms since being diagnosed?

Everyday living
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Hello again everyone,

A little background, I was diagnosed with MS just before Christmas, December 2020, after having a few (what I now know to be) relapses last year. From my medical history, I’ve been told I’ve probably had it 20-30 years though MS was never mentioned once until last year so it all came as a bit of a shock.

I haven’t been on the board since January, at that time I had moved through various emotions, from initial anger, to fear, to upset, to feeling numb, to eventually being pragmatic and accepting (or so I thought). I started on Steriods early January but unfortunately on day 4 of the steroids I started getting Covid Symptoms and was tested positive, I was floored by Covid for just over 3 weeks before I began to recover.

Probably because of Covid, I never felt any gains from the Steroids really, like I was told I would. Then in March I started Tysabri and I have my 3rd infusion next week. I don’t feel any different, I’m still tired, a lot, I still have burning feet, leg cramps and shocks, I’m still not sleeping well and I still feel like an old woman with stiff legs most mornings!

My question to you all … Do/have you reacted differently to your symptoms since being diagnosed? … is because I am strugling right now, I feel that my whole life (I can trace symptoms back to the age of 27, I’m now 54) I have dealt with a variety of symptoms with very few answers from the Doctors, or having them attributed to other issues, like hypothyroidism, pregnancy, child birth, generally ‘being a woman’!, the menopause, ulnar nerve, a bulging disc, my weight, etc. So being a busy working single mum, I just had to suck it up and ‘deal with it’. So I did, I pushed on with my life, sometimes feeling like I was wading through treacle, often in pain, and even though I sometimes cried myself to sleep at night, for the most part I got up every morning, pushed aside any thoughts of what could be wrong, what pain I was in and got on with my days/life for the kids.

So WHY, since my diagnosis, am I now struggling to do that? I managed to do it for 20+ years, so why now can I not get out of bed some mornings? Why does the pain feel so much worse this past few months? Why am I so low? Why now, instead of facing the day and fighting for life like I used to, am I giving in to this and pulling the covers back over me instead? Is it a thing, like a psychological thing, that some people just give in to it and stop fighting? Am I just tired of fighting? Is it because I have found out all this is an incurable disease? Have I lost hope? Urgh! I really dislike myself right now and how I am feeling.

Can anyone help?

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I’m 50 and since having my diagnosis 2 weeks ago I have gone into a ‘can’t be bothered ‘ mood
I have had issues for 25 years on and off and like you I coped and pushed myself. I was fit and was always at the gym or running even when I ached like hell . Now I’m making excuses for everything and find myself slowing down
I need to snap out of it otherwise I will be old before my time
It’s probably the shock and hopefully you will be like you was before diagnosis

Take care if yourself xx

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Hi we all get weary at times but you are obviously a strong person as you’ve coped with it for many years without even knowing what was actually wrong. MS is a label but it has consequences and it’s easy to dwell on those at times, but it also opens doors to support and that can lead to benefits that you haven’t had access to before. I’ve had MS since early childhood, then diagnosed in my early teens. Wisely my mother told them not to record it officially and her decision helped me have as normal a life as possible without having outside influences make decisions about my life. I gained a degree (several) without people knowing about my MS, had a great career, married and had children. I’ve led a very active life. I’ve got MS it’s not all bad, it’s been something I’ve had to cope with. I love life. So it’s OK to be weary at times, it’s OK to stop fighting for a while, it’s an incurable disease, so give yourself some breathing space and if you want a duvet day then that’s fine, but remember life can be so good. :kissing_heart:

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I can well understand how you feel but I’m thinking that the COVID has a lot to do with your additional physical and emotional stress. I’ve known young, healthy adult men, like our builder, feel like you are describing for a few months after having COVID. And they didn’t have MS.

Three years back I had man flu and, of course, that’s really bad. It certainly put me back.

The good news is that of the few men I’ve known that have had COVID they all bounced back after a few months. And so did I.

So don’t give up. That’s easy for me to say I know but keep on posting here and people will give you all the support you need and hopefully you will begin to feel more together again in time.

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Hello, and thank you for your replies & insight.

Kerry: I’m so sorry you are in the same boat as me and feeling the same too, I feel like that too, I keep trying to snap out of it but I’m failing right now. The reason I chose Tysabri was to give me the best chance of being relapse free whilst I am still in my 50s/60s so that I don’t feel old before my time too, but if I don’t manage to get my head on straight and shake this low, I’m certainly not doing the Tysabri any favours, I know that.

Theorising: What great hindsight your mum had! That decision to not put a label on you has helped you thrive. I do think that psychologically, I’m fighting with my own mind over the ‘incurable’ side of this and I can see myself giving up and I don’t want that.

Keith: It’s true that Covid both floored me physically but also mentally, I was so very scared that I wasn’t going to pull through. I think both sides of that have had a longer lasting effect than I’d given credit for, you’re right.

Eastendgirl: I think you’ve hit the nail on the head, I think I am at that brick wall. I became an empty nester last year too but I didn’t really stop to think about things because I was having so many new health issues and fighting for a diagnosis last year, then I got my diagnosis mid December, then it was Christmas, then I caught Covid, then I had to make a decision on which meds and start Tysabri. And now everything has slowed and I’m here in my empty nest facing a future with MS and feeling very low about it. I’ve always kept going for the kids. Now I have to find a reason to keep going for myself and I’m finding that very hard now.

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Hello

I think it sounds like you are giving yourself a hard time over problems that honestly, would floor most people.

You and I are the same age, I’ve had MS for 24 years and am now very disabled, mostly because I’ve not been able to take disease modifying drugs due to side effects. (Plus I’ve had some pretty severe relapses which have robbed me of the ability to walk, among other things.)

Having Covid diagnosed while you were on steroids must have been awful. Steroids depress your immune system. This is why they work on MS relapses.

An autoimmune response (as in an MS relapse) happens when your immune system reacts to either an outside stimulus, or to nothing at all and attacks your healthy tissue ‘believing’ that it’s an enemy invader. With MS that healthy tissue is the myelin which coats your nerves. This gives you symptoms of a relapse.

If you take steroids to help the relapse come to an end quicker (which is the point of steroids), your immune system is depressed and cannot easily fight off actual enemy attackers, such as infections and viruses. Which meant in your case that the symptoms of Covid were allowed to run amok in your body without the soldiers of your immune system having the strength or the weapons to fight the virus.

This could mean that you’re still suffering the effects of Covid, maybe even what’s become known as ‘Long Covid’.

I am completely unsurprised that you are having a hard time at the moment. In addition to Covid, you’re having infusions of a fairly heavy duty drug. Tysabri is an excellent drug. It does a great job of reducing the number and severity of relapses. But it can take time for it to begin working effectively.

A disease modifying drug is not supposed to cure existing symptoms, nor make you feel any healthier. It’s job is simply to reduce relapses. So as time goes by, instead of experiencing relapses that can leave you with symptoms that ultimately bring you greater disability, you’ll just live your life.

I’m sure that given some time you will bounce back to where you were. Obviously as we age (plus having other health issues), everything becomes more difficult. But MS relapses probably won’t add to your normal woes.

You will hopefully find this new forum useful and supportive. Those of us with more experience with MS will do our best to help you with information and experience.

Sue

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I went undiagnosed for 40 years, so I understand the whole “keep on going no matter what” thing. Now that I have a diagnosis and was able to quit work and go on government disability, I’m just relieved to finally be able to give in to my symptoms.

It hasn’t been easy. For the first few months I felt guilty all the time because I wasn’t working, wasn’t cleaning the house, but the reality was that I was so bad at the time that I could barely even dress myself. I’ve rallied since then and have given myself permission to just play all day.

I still sweep and dust periodically. Have to wash dishes and clothes once in a while. But mostly I just do whatever feels good to me at the time. It’s working very well!