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exhaustion

Hi, can anyone tel me if I remit will the feeling of tiredness go away? I & my Neuro think I’m remitting, my walking /standing is improving slowly but the tiredness is the same! The physio i saw Monday said she thought it didn’t but wasn’t sure. I was dx in July 2015 but, the Neuro said I’d had rrms for many years. If that is true then I wasn’t exhausted before this year when I do nothing!! Anyone know? Thanks hope you’re all feeling ok. X

Hi Helly,

Sorry, but there’s no way to tell.

Fatigue (tiredness makes it sound a bit mild!) is one of the most commonly reported symptoms of MS, and, from memory, I believe more than half rate it as their worst symptom - i.e. above pain, above actual disability (fatigue is in fact disabling, but invisibly so).

Some people only or mainly have fatigue during relapses, but for others, it’s a permanent feature. I’m afraid I’m in the permanent feature brigade - it’s never gone away. I think I had it before I’d ever noticed any relapses. I used to get my leg pulled by relatives about dawdling and feebleness, well before anything sinister was suspected. I especially remember pushing one of my nephews when he was little, in a pushchair, and my sister nagging: “C’mon, can’t you do any better than that? We’ll be here all day!”

Well, I couldn’t do better than that - and I didn’t think I was slacking!

Several obvious relapses and a diagnosis later, things haven’t improved.

Most symptoms of the relapses either disappeared or improved greatly after a while, but the fatigue never did go away, and has only got worse. I’m sorry that won’t be what you’re wanting to hear, and it doesn’t mean things will necessarily be the same for you, but it is a hugely common and very underestimated problem with MS, because nobody can see that you have it.

I’m sure many people here will tell stories of having to break any significant task into as little as ten-minute slots, because that’s how long their energy lasts.

Tina

x

Hi Tina, thanks for your reply. I just can’t understand that the Neuro said I’ve had MS for years but, until the dx i did not feel any fatigue ( except when kids were young or ill & I lacked sleep ) & they are 41yrs & 42yrs now. So I’m hoping along with my walking/standing that the feeling of fatigue will go away too. I hope you feel as well as possible today. Helly X

Hi helly,

It sound that you may have Lassitude Fatigue which is an overwhelming sensation of tiredness that does not appear directly related to participation in activity or exercise. More people with MS have this one or the one below.

The most common is Nerve Fibre Fatigue where the effort of doing something gets increasingly difficult over time until you are forced to stop. It often improves after a short rest.

Some of us including me have Primary Fatigue which is a direct result of damage or inflammation to the myelin in the central nervous system. The body responds to this damage by slowing down reactions thus causing fatigue

And there is also Heat Sensitivity Fatigue A rise in body temperature can cause fatigue. This kind of fatigue can occur due to the seasonal changes in the weather. Or can be triggered by taking a hot bath or eating hot meals.

Take care

Keep Smyelin

Kielyn xx

Hi Kielyn, yes it sounds like Lassitude fatigue I have. I’ve never heard of it but I will look it up, from what you said tired out doing almost nothing it sounds right. So as I say I hope when I remit more it will go away! Thanks again Helly X