How does MS feel?

Everyone's MS is different so there isn't a real answer to that question. There are a lot of things that we can share though - and it helps to know you're not alone and not the first to feel that latest strange sensation! It's like the story of the man in the hole:
"This guy's walking down the street when he falls in a hole. The walls are so steep he can't get out.
"A doctor passes by and the guy shouts up, 'Hey you. Can you help me out?' The doctor writes a prescription, throws it down in the hole and moves on.
"Then a priest comes along and the guy shouts up, 'Father, I'm down in this hole can you help me out?' The priest writes out a prayer, throws it down in the hole and moves on
"Then a friend walks by, 'Hey, Joe, it's me can you help me out?' And the friend jumps in the hole. Our guy says, 'Are you stupid? Now we're both down here.' The friend says, 'Yeah, but I've been down here before and I know the way out.'" 
So here are some ways that MS might make you feel:
  • Fatigued. Not just tired, I need a nap. Exhausted. Like you've walked too far, stood too long, done too much. Bone-achingly destroyed. Like somebody has put weights around your limbs, like you are wading through thick mud.
  • Altered sensation - pins and needles. That feeling when you went to sleep on your arm and it hasn't quite come back yet, except you didn't go to sleep on your arm and it doesn't come back. Maybe it is your arms, your hands, your legs, your feet - and for me (once, very annoyingly) the tip of your nose.
  • Altered sensation - burning and itching. Did you tip a scalding kettle on your hand. Cold, heat, pressure - some might help. Ever fallen in a nettle patch? You have to scratch - but that isn't going to relieve the itches... or maybe more like a bunch of insects are crawling on you, but you can't brush them off.
  • Altered sensation - numbness. You know that you still have hands, feet, legs or whatever, but you can't feel them being touched and you can't place them physically. I've never been in one but I'd imagine it's a bit like floating in one of those sensory deprivation tanks.
  • Vertigo - dizziness.
  • Muscle tightness and spasms.
  • Optic neuritis - visual disturbance and sometimes eye pain.
  • Cognitive difficulty - poor memory (you can't remember what you were going to do, you need a list); difficulty maintaining a train of thought or focusing or concentrating; forgetting words (REALLY annoying that one, when you keep having to play a version of charades or twenty questions).
Remember, everyone's MS is different. Not everybody experience the same symptoms and if they do they don't experience them in the same way.


  1. Great description and explanation!

  2. Hi i found this very interesting i was diagnosed with Fybromyalgia 19yrs ago and have always felt it was MS. i had not fybro, everything and more from above i experience how can i get my doc to understand that i feel i have MS and not Fybro, i no longer visit my doc's because everything from a runny nose to complete imobility is caused by my Fybro according to them.

  3. Hi i suffer everything from above and more, i was diagnosed with Fybromyalgia 19yrs ago and feel it is wrong i feel i have MS and always have, how can i get to the right diagnosis, my GP puts everything from a runny nose to total imobility down to my Fybro, i have already changed GPs' because of this but no one wants to listen, having been labled with Fybro seems to satisfy them and they treat me accordingly, do you have any advice for me please.
    Many thanks.

  4. inpireme, my only advice (not being a medical person myself) is to do what I did when they told me that my repeated Optic Neuritis was 'just one of those things' -- keep on going back. Demand more tests. The problem is, from what I have read, is that a lot of the symptoms of the two diseases are very similar. Hope everything works out for you.