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How do i define things?

Hi i have been diagnosed rrms nearly a year now. Have had a few relapses, taking rebif and gabapentin and suffer on a daily basis with, nerve pain, sensory issues, varying levels of fatigue, and cognition problems. Somedays are worse than others and it is fairly dependant on how much i do the previous day.

Over the last couple of weeks i have had a least one day a week where all my limbs feel like stone, every muscle in my arms and legs feels tight and stiff and my head is like cotton wool - just cant form a thought. This is not following the usual pattern of having overdone things the day before - just very random.

Is this how it is for others? What is causing this one or two days a week where im incapable of anything other than laying in bed. Is it classed as fatigue? or is it just the nature of ms? Any advice you could offer would be greatly appreciated. I find it hard to explain to my gp/nurse/neuro and i think they think i am doing a lot better than i actually am.

Many thanks.

Oh dear, I don’t know the answer, because it almost could have been me writing! I was having a rant only yesterday, that the write-up of my most recent neuro visit claimed I have “no significant symptoms”, other than painful feet and slight urinary hesitancy. This certainly doesn’t capture how rubbish I feel on a day-to-day basis. Like you, I feel as if I can’t have explained it very well, and they think I’m doing a lot better than I am. Of course, none of it’s visible, which doesn’t help - although I should have thought most neuros would be well aware that with MS, looking fine can be deceptive - it doesn’t necessarily reflect how the person is feeling.

I feel constantly exhausted. I lost my job last year, but have never even looked for anything else. I recently started college just one afternoon a week, but am questioning whether even that is too much. Once the bus and train trip is added, I get home on the verge of collapse. Fatigue isn’t even mentioned in my write-up, nor the fact I ache everywhere, every day, as if I had permanent flu’.

One thing I did acknowledge, in my own rant about this, is neuros do see a lot worse cases. I know that is of little help, and doesn’t mean your problems (or mine) are insignificant. But it may help to explain why we see ourselves as struggling, whilst they think we’re doing well. Compared to their last patient, we might be!

But I know the mantra of: “there’s always someone worse” isn’t much comfort, when you wake up thinking: “Am I always going to feel this bad?”

I suppose it depends how much you want to pursue it. I would like my notes at least to reflect that my illness does interfere with life - which I don’t think they do at the moment. But on the other hand, I’m not desperate to add yet more drugs, so I’m not sure it’s worth making a fuss, if I’m not really wanting them to treat it. I don’t think anything they can prescribe will make it as if I didn’t have MS, so it might be a bit pointless clamouring for the impossible.

As someone (Alison) so rightly pointed out to me yesterday, it’s not always that we want something done, but more that we want our issues acknowledged. It is a bit dispiriting, when you feel lousy, but your medics are saying everything in the garden is rosy! They probably know it’s not “fine”, but they do see a broad spectrum of cases.

Tina

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Thanks for your reply Tina.

I just dont understand why i can be more or less ok one day, having done no more than usual, and the next bed ridden. I know i could be a lot worse than i am, however it’s getting to be a miserable existence waking up everyday and assesing how much pain im in, having to judge what my limits will be etc… So i don’t suppose there is much my nurse or neuro can do apart from offer different meds and sympathy, just wish i could work out why it varies sooo much day to day. I guess this is the nature of MS?

I do find it variable, but perhaps not to the extent you describe. I’m still officially RRMS, but I’m sorry to say that I do feel there’s been progression, even in the absence of obvious relapses. I think the ropey days are pretty much the norm for me now, instead of the exception. But you still wouldn’t guess if you met me. Only people who get to know me better might notice I’m surprisingly lacking in motivation or stamina, for someone of my age, although they still might not guess it’s an illness, and might think I’m just a bit of a wet blanket. I’m not dressed today, although I’m not literally in bed. I know I’m not young any more, at 47, but of course this isn’t normal. Even my elderly mum isn’t spending all day in her dressing-gown, and needing a nap by mid-afternoon. She’ll be off out buying the groceries by 9 a.m, unless the weather is really treacherous. So I’m under no illusions this was how it’s meant to be, but at least diagnosis taught me it’s not a character defect, that I could choose to overcome. This IS my normal - not something I could snap out of if only I tried (which I’d been wrongly accusing myself of for years).

I’m sorry if this doesn’t really help much. It IS depressing when every damn thing feels like climbing Everest, even when you’re not visibly sick! Sometimes even my clothes feel heavy. This dressing-gown, though warm, feels as if it had lead sewn into it. And I’m sure somebody is stealthily adding weights or magnets to my kettle, and other domestic items, so they get more and more resistant to being picked up.

But apparently, I’m doing fine - the neuro says so. I suppose there are just different degrees of fine.

Push it, if you think a change of meds might help. Personally, I’m rather conservative with meds, so not too keen to experiment, but I suppose it’s possible things could be better, if I were more proactive. But I’ve never been offered anything for the fatigue, which I think is the single biggest problem. Modafinil has become hard to come by recently, although many people with MS used it successfully for fatigue. The only other alternative is amantadine, which I wouldn’t be allowed anyway, as it interacts adversely with quinine, which I’m already on. So if it were offered, I’d have to choose which of them I want. Not an easy decision, when I’ve been pleased with the quinine.

Tina

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Oh Anitra

When I read your post it so describes myself.I find very little support from drs/nurses as on the whole I can walk/talk/function to a certain level (walk with a permenant limp now)which thankfully I can.Like youself feel my RRMS has progressed but drs just say ‘you have MS ,it will affect your life’ (ya think!!)and thats all I get.Feel I will have to get really bad before they do anything. I just have lots of little things that add up.

The fatigue for me is a big thing.I am on Amantidine which does help take the edge off it. Does work as notice if I run out

OP I have not found a way to manage this because as you say it is so variable.I can do an activity one day and will be fine the next time try to do same activity and it wipes me out. Because I don’t look ill folk give you that look that implies your over reacting/making an excuse.TBH have given up trying to work it out and just ‘get on with it’.

Do you have a MS nurse you can contact?

Hi,

This is my first time on here and reading about your symptoms really strikes home with me. I was diagnosed with RRMS in 2010 and have been relatively ok since but have now been off work for 3 weeks feeling just like you have described in your posts. I’ve also had balance problems and dizzy spells when I’m mobile. Is there a time span for this or can I expect the symptoms to be ongoing?

It’s kind of comforting to know the symptoms are common with MS sufferers so thanks for sharing on here.

Best wishes to you all.

Elimay.