Reply To: The Language of Polyneuropathy

Lori:
I am 5’8″ (used to be 5’8 1/2″ boo hoo!). I, too, was a runner (marathoner, spin instructor, boot camp aficionado, etc.) I ran the NYC marathon when I was 40; for my 50th I thought it would be a great idea to celebrate with another. I ran the Steamtown Marathon and had a good first half, but miserable (and painful) second half. I was so annoyed with my performance (4:18 time) and got my picture but had the time blacked out. At the time I had no idea of what was coming – nor how proud I should be of that accomplishment.

The summer before that marathon I had such bad pains in my back and legs that I would run for 2+ hours 6 days a week – just for pain relief. Those runs would give me a few hours of blessed numbness. The next morning – the agony was back – and I returned to the running trails. Throughout that summer I kept dropping things (there are dents all over our wood floor) and then I started falling. I swept them all away, thinking … I am tired, I am in the depths of my training, I have kids, I work, I am going through menopause,etc. Looking back, there were many years of signs that I easily explained away but that now all seem too clear.

Regarding the “up or down?” toe test – when I began my CIDP/SPS journey, I had no control over my feet or my legs, never mind my toes. Very brisk reflexes (and yes, I am very thin). I did get some control of my body (inc. my feet) back thanks to 18 months of IVIG medicine. The good news is that the numbness has returned which helps to notch down the nerve pain a bit. The bad news: the numbness can be dangerous. A few mornings ago I was in a rush and quickly put on my sneakers Later that night I noticed some throbbing – when I took off my shoes I realized my toe was bent all the way underneath my foot. So swollen and disfigured- a close call but thankfully I didn’t have to have it taken off.

I experience both numbness – and burning, horrible nerve pain. I have the fasicullations (esp the day after my IVIG infusions), intense cramping and spasms. I have swallowing problems, bladder issues and a really rough time with my procreoception. I also have Stiff Person Syndrome, which complicates the spasms and cramping that we also get the CIDP. It adds a new layer of stiffness, spasms and an overactive startle reaction.

Ugg! What a mess, huh? Just think of how many sit ups, push ups, miles we, as athletes, ran, the salads we ate (and desserts we skipped). Maybe next time around we have to skip the salads and head right to the chocolate cake!