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Intro :: History :: Fatigue

Hey Guys,

I have been reading posts on this forum for a the last few months now and decided it’s a good time to say hello and to gauge opinions on how to combat fatigue.

My Story:

My symptoms first started last December, shortly after a bout of the cold / flu - I started to experience Dizziness and a sore tail bone that I could never explain how I hurt. It wasnt until Feburary of this year that I got a symptom that prompted me to seek medical advice. This symptom turned out to be the Lhermitte’s sign. Initially my GP figured I simply had an infection caused by the cold/flu and couldnt explain the buzzing sensation I got when I bent my head forward. After a few weeks and checking my B12 levels - I got referred to a neuro specialist.

By this stage - the symptoms had become less flu like and centered very much around my wasit and below - I had lerhmittes, stiff muscles and painful joint pain in legs, very tired legs - with a range of bizarre sensations which came and went. I got sent for a MRI in April - which, thankfully came back as all good. Working theory at this stage: Viral auto-immune attack - one off - perscribed steroids (methylprednisolone) to hopefully resolve it.

Methylprednisolone had done the job - a few weeks after finishing the course, all symptoms had retreated. Great!

Early June: Wake up to find Lerhmittes had came back - but was very subtle at first, week after that - legs stiff and sore, fatigue back and started to get my first visual problems (blurred vision in left eye & eye pain) including muscle spasms in back and chest area - back to consultant - this is the first time that MS had been discussed.

In late July / early August: I had a Lumbar Puncture, blood tests and VEP tests.

I got my results for these a few days ago:

Lumbar Puncture, all clear - had showed normal across the board - good.

Blood tests, all clear - normal across the board - good.

VEP, borderline normal / abnormal (114ms) - consultant was not happy with the results - considered it a bad result due to my age (29) …

Conclusion: Hoping its still a one off, confident that damage has occured in Spinal Cord and Brain (visual issues + VEP result) - but damage is no longer occuring (due to LP result) - go back and visit consultant in six months time - Welcome to Limbo.

So thats all optimistic! Chances of it being MS is slight. However, consultant mentioned that recovery can take years and that I may never get back to my old self. So while I’m going to get meds to help with dizziness when it occurs - there is nothing out there to help with fatigue?

I can cope quite well with a lot of the symptoms: painful joints, tight muscles, blurred vision, ear popping, burning/painful to touch skin, numbless etc – and heck, I even find some of them amusing: the lerhmittes when it changes and buzzes my toes instead of the tail bone and my backside going numb the other day was a hoot.

Faigue is my main issue - waking up feeling like my legs have run a marathon while I slept is not how I want all my days to start - they are tired 24/7 and this fatigue can spread to the whole body on certain days.

Any tips on how to combat this fatigue - how do you guys handle it?

Thanks :slight_smile:

They saw the best thing for fatigue is exercise! I used to walk alot as only thing I could really do as I had little movement in my left arm, also unable to drive due to vision problems. Had to give this up when I got burning in my calfs and stiff legs. I have been on Amitripyline for about 6 weeks now and now get more sleep, plus legs are better, but live in a very hilly spot and although I am not bad on the flat still can’t do hills! I have bought an exercise bike, need help getting on as my left leg does not bend well, but ok once I’m on. Started at 2 mins a day and am now up to 7 mins, feeling better for it and fatigue does not seem as bad. Also been trying to eat better as well.

Consultant did mention exercise. To be honest, I was pretty active before the fatigue hit big around April - I have been actively not being active due to the tiredness in my legs. It does seem rather counterintuitive to exercise to help with fatigue. I plan to get back to my active lifestyle rather than avoid.

Hello, and welcome to the site

As you say, it all sounds like good news, but I guess that doesn’t make it any easier to deal with the after effects :frowning:

Fatigue is a common problem in MS, but they still haven’t worked out quite what’s going on (there are several theories) and so there are no fatigue-specific meds for people with MS. There are two drugs that are prescribed for some of us though: amantadine and modafinil, but neither work for everyone and they aren’t the sort of meds a GP will prescribe without someone having a diagnosis in case they actually do harm.

There are booklets about fatigue on here and on the MS Trust website that might give you some ideas about managing your fatigue better. As Apple Pad said already, exercise has been shown to improve fatigue and a healthy diet certainly won’t hurt. There isn’t really a quick fix though - and we are all so different, what works for one may not work for another.

Waking up with achy legs does suggest that there is more than fatigue going on though. It might be worth asking your GP for a referral to neurophysio. They can work out what the problem is which could lead to finding better meds as well as specific exercises to help you. (Neurophysios can also help with dizziness.)

One thing to always bear in mind - it’s a sad fact these days that those who ask are the ones most likely to get. So don’t suffer in silence - ask your GP for help with whatever you’re struggling with, and keeping asking until you get!

Karen x

Thanks,

Don’t ask - Don’t get.

I guess I’m like alot of people when they see the GP or consultant - I dont want to come across as a moan - so I silently accept what they have told me - I always leave with more questions and wish I had handled the whole affair better.

i.e. I spaced out a little while when he discussed my VEP result - didnt really take the discussion in - think I’ll take someone else in with next time - help move the discussion along.

but my consultant seems to know his stuff - so I’m trusting of his opinions.