I have been formally diagnosed and treated for Restless Legs Syndrome (RLS), a neurological condition that causes terrible sensations or a need to move the legs when a person is trying to relax or sleep. But my symptoms didn’t start when I was relaxing or going to bed– they started at the end of a shower. And even though I am being treated for RLS the post-shower sensations and need to move haven’t completely abated though they are the same as what I experienced as I was falling asleep or when trying to relax.
Around six months after I was diagnosed with lupus and was starting some new drug for fibromyalgia, I took a shower before work. As I stepped out I felt a deep itch in my legs, best described as electrified. I couldn’t stand still to put on my makeup; I felt like I wanted to rip my skin off and scratch at the muscles. I put on leggings to buffer my skin from my desperate fingernails. I was going to be late for work but I knew there was no way I could be trusted to drive with my legs writhing against one another.
I called my rheumatologist who had prescribed the new medication for fibromyalgia. She told me to stop taking it and to take Benedryl. I thought she meant as a way to make me sleepy in an effort to calm the nerves in my legs I took some but it was because she thought I had a rash on the skin of my legs. After a few more weeks of random electric itchies, as I dubbed them, I was told to “avoid hot showers because it causes dry skin which could be itchy”. It didn’t matter that I never took hot showers because I felt like I would faint or that I heavily moisturized my skin and had no sign of rash or dryness on my legs. I realized my doctors weren’t able or willing to help me.
My boyfriend at the time, a data nerd, created a spreadsheet for me to fill out before and after each shower to try and find a correlation. Cold, warm, hot; duration; time of day; mental state; schedule; diet; amount of sleep; exercise; products used; whether I shaved or not; where the first twinge began, it was all recorded for six weeks. The only pattern that we could find was that taking showers before noon seemed more likely to result in electric itchies. So I avoided showering before noon.
But they were cropping up at random and sometimes I just needed to shower in the morning. The electric itchies were like torture, sometimes lasting over an hour– I put on leggings and tried to rub my skin with my knuckles instead of fingertips, sliding my legs against each other and trying to hold a flex in an effort to exhaust them. Nothing worked. The sensation would continue no matter what I did until it ended. Knowing my non-existent tolerance to alcohol and having a well-stocked bar for entertaining, I would tell myself if it got too bad I could go drink some. It would make me unable to move my limbs and then I would pass out very quickly. It was a semi-suicidal tactic knowing my trouble breathing after drinking alcohol. But in the moment I was desperate to stop the torture.
Then the electric itchies started cropping up on my arms, I would feel a twinge around my shoulder. And it would spread down my arms, so when I got out of the shower both my arms and legs were inconsolable. I brought it up again to my GP and again I was told what dry skin was and how to prevent it. Again I explained that it wasn’t dry skin and was ignored. I took to the internet and found multiple people describing similar post-shower, post-pool nerve pain but with no help from doctors. No one had a term for it though some people said it sounded like restless leg syndrome but that didn’t fit because restless legs was something that affects people who were trying to relax or fall asleep, showering doesn’t fit that, especially after the shower when trying to get ready.
Finally, my doctor ordered a nerve conductivity test. Needles shoved into your legs and arms so electrical currents could be measured. They were normal. I was advised that I could take some of the mindfulness courses offered by the hospital to help me deal with stress. Never mind that I use the mindfulness techniques (yoga, meditation, journaling, relaxation techniques and that was would really help with stress reduction was not getting tortured by unseen forces randomly after showering.
So for two years I just stopped talking about it with my doctors. As much as they like to think they are removing the stigma of mental illness, the moment they’ve referred you to therapy for a symptom or a condition they aren’t familiar with, your quality of care goes to shit. Soon, anything you come to the doctor with is psychosomatic.
Patient: “Uh, yes, I am coughing up blood and there’s this alien face jutting out from my chest cavity.”
Doctor: (without actually looking at patient) “Hmmmm, well, have you been under a lot of stress? Have you tried journaling?”
Glimmers of Hope
Then two summers I started experiencing proper RLS. I would get myself all melted into bed (it’s a process with fibro, relaxing oneself past the pain) and then, just as I am about to drift off: legs are ready to party. /oonze-oonze-oonze/ It was the same sensations I was getting after showering. So I went back to my doctor with the confidence of knowing the name and symptoms of the condition, and that lots of other people had experienced it. He found that my ferritin levels were so low as to be undetectable in my blood tests and prescribed supplements. The restless legs seemed to get better, though the electric itchies did not.
When the RLS got bad again the following summer I started to think it was a summer-time thing. Then, this spring, RLS struck early and was at an 11. I was dating a guy with two cats living in the country. For most of the night my legs would flailing, waking me up, and at one point punting a beloved cat right off the bed (Said cat has still not forgiven me, btw. But will accept treats if I am sitting on my legs). I started reading about RLS and discovered that antihistamines aggravate it. So no wonder I was experiencing it more often in the warm months when my allergies were so bad. I stopped taking them and just dealt with my face exploding and made sure to carry an inhaler just to get some sleep.
But it was getting worse: my arms joined in. Just like with the electric itchies, legs preceded the arms. I started wrapping my arms in the sheet and then lying on them. I needed to sleep on my tummy to keep my legs from kicking up and waking me when they dropped to the bed again. I felt like my body was possessed. I thought about getting a bungee cord around my bed to trap my legs against the mattress. But I have to wake up to pee at least x3 a night and that seemed a great way to fall out of bed.
Once again, I went to my doctor. Five years since the electric itchies began and three years since RLS, my doctor prescribed Mirapex. And it’s working. IT’S ACTUALLY WORKING.
Restless legs: gone. Electric itchies: greatly subdued.
So here’s my theory: Electric Itchies is related to but not caused by same thing as restless legs. What I would like to know is what is causing it, what the right terms for the sensations are, and how to stop it.