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What words do you use? How do you describe the feeling that someone is inside and crawling through your body? Irritating your nerves, muscles and just generally driving you nuts?
I have called it the heebie-jeebies but would like a better way to describe. Do you call it pain (because when it gets intense it is painful)? Do you call it spasms, hypersensitivity?
Thank you for your help!
It's difficult sometimes can't explain or Express so tell him that. I have hubby go in with me so he can tell Dr what i described to him. My neurologist seems be good at understanding. Understand @A MyMSTeam Member about pulling of leg but for me is arch of foot that does that. I had a ms nurse explain once they also refer to this as spasticity. The stiffness in legs is that too. I have that too. At least he understands the Trigernimal nerve pain. Even though hes never had it said he's aware of it being so bad.
Ooof yes this is challenging. I dont describe it as numb..but tingly or fuzzy. Maybe the feeling when your limbs come back after falling asleep..and thats typically after my exercise routine. Everything else is easier to describe , like short stabs or heavy or weak feelings.
Thanks for posing this question! Having gone through diagnosis and my first symptoms almost 3 years ago now, I definitely still struggle to find words to express how it feels.
My DR often wants to use words he's heard people say before, like "numbness" but that's not what I feel at all! It's more like hypersensitivity than numbness! I've said some crazy things - but I can't find a better way, and to me, it feels very different than any previous experience with "numbness"!
Two of my statements that have gotten the most reaction:
1. My fingers feel like spongy twinkies with scratchy sawdust all over them.
2. I feel like I'm touching something before I actually touch it - like there's feelers of little lightening bolts coming out of my fingers anticipating that I'm going to touch something before I actually do.
Yeah, I may get crazy looks from some of my DRs, but I refuse to have them write "numbness" in my charts when that's not what I would call it at all! I figure the only way they'll truly learn how it feels (short of having MS themselves!) is by us repeatedly telling them in our own words. XX
When I have to tell him about the stinging, burning, "biting pains" - I tell him it feels like I've stepped on a fire ant hill. He understands.
i t wasn't easy at first and then once i was diagnosed with MS the doors sort of flew open . it was a bit bewildering at firs it was. I understand more now.
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