Sometimes we struggle to find words for the symptoms we experience. I thought of one this morning which might be helpful to someone.
The pain in my fingers used to feel like I’d fallen into a patch of stinging nettles. Since then it’s turned into the most bizarre sensation of stinging and numbness.
It’s as if I’m wearing a chain mail glove; the nettle’s sting still gets through but it’s impossible to do fine manual work, like turn the pages of a book or pick up a needle.
It’s analogies like this that help me to explain to my nurse, doctor and neurologist what I’m actually feeling. (As opposed to what the MRI says I have or haven’t got.)
Ha, good analogy. My hands have a constant low level buzzing, a bit like when your arm goes to sleep but with out the pin prick needle feeling. Also they feel like I have a pair of rubber gloves on one size too small.
MS certainly stretches our powers of description doesn’t it? Sometimes I am in session with my neuro and I think “I’ve got a really bad case of analogies here haven’t I?”
I tell my neuro that it feels like I’m walking on a pebbled beach without shoes on and my hands feel like I’ve had them in a pot of olay for a week, they are so soft.
I think this highlights one of our big problems:
Your MS (any of you) is not quite the same as my MS.
We each try for a description of a particular symptom, and the professionals hear a string of descriptions that are all different.
They just plain do not know what it is like!
I used to describe my neuropathic pain as “if my legs were crushed from the inside out” - then someone came up with “the worst toothache in the world, from knee to ankle”, and I have used it ever since.
Now, I need a good description of my leg spasticity (and the pain that comes with it) for an appointment with my MS Nurse in three weeks time.
My nuropathic pain is like walking barefoot in snow and plunging your feet into hot water, it really hurts in both hands and feet. I have carbazepine and amitrityline to calm the burning. Thank goodness. Life would be unbearable without these drugs.
I have never needed to use the “Sunburn” description - until today.
Woke up with both legs from the knees down feeling exactly like a case of sunburn.
Funny thing is that it started to fade on my bad leg first (say an hour), but it is still there on the good one.
I often refer to my legs as cartoon legs. I can feel them throbbing like they do in a cartoon. It hurts to move them. I have suffered from the Sunburn legs since my diagnosis almost 9yrs ago.
Another description I use to describe what goes on is I feel like a Sloth. It feels like I am moving really slowly but it takes some effort to do so.
The feeling all this week that there’s a tennis ball behind my right knee.
Getting the Sloth thing too with the slow walking…now I just need to describe how I walk with a side-ways “lift” of my right leg, from my hip to inform my Neuro at the end of the month!
Before I was diagnosed, or even saw a GP about my symptoms, I was standing in the high street, chatting, and asked my friend, “Is the ground vibrating?” It felt to me as if there was a silent pneumatic drill operating nearby. He said “No”; so I thought no more about it.
Six years later … Boom! Straight in at No.1 with PPMS; from optic neuritis to diagnosis in 18 months.
Does anyone else remember any unremarkable pre-diagnosis signs? And Alison; keep it clean this time.
