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 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?