Does Your Back Always Itch? There's a Name For That
I'm part of a few Facebook groups that focus on endometriosis. One is called, "Extrapelvic Not Rare Endo Support and Education Group." I follow this one because researchers are way behind on how many people actually have endo outside of their uterus. And crowdsourcing is the best way to learn about all kinds of shared experiences.
And it turns out, I'm not alone in one of my strangest symptoms: chronic tingling and itching in the middle of my back.
What is nostalgia paresthetica?
I had no idea this "unreachable itch" was a condition with a name.2 But here's how the National Institutes of Health describes nostalgia paresthetica:1
"A common chronic, localized itch, that usually affects patches of skin on the upper back. Occasionally it can be more widespread and involve other parts of the back, the shoulders and upper chest. People feel both the sensation of an itch and paresthesia — a sensation of tingling, pricking, or numbness of the skin. There are no signs on the skin except for signs of chronic scratching and rubbing."
I felt so seen when I read this. It perfectly captures what I feel. I've even woken up at night scratching my back. More specifically, this is what it feels like for me:
- Tingling in one spot below my left shoulder blade
- Concentrated itching or stinging, like I've been bitten or stung by something
- Mild itching across a wide part of my mid-back
- Widespread chest itching
These sensations come and go, but they're worse when the rest of my nervous system is tuned up. And that's the week before my period, after I've exercised, or when I'm stressed.
Is it caused by endo?
Not likely, says Dr. Ken Sinervo, the medical director at the Center for Endometriosis Care in Atlanta. He responded on the Facebook page that, it's not impossible, but that "true spinal endo has only been diagnosed a few times."
So what does cause it?
It's complicated, but experts think the nerves in the spine may get compressed, damaged, or irritated.1,4 Whatever the reason, itch-signally pathways become overactive.3 Inflammation is also involved.4
The person on Facebook says she has hypermobile joints. She thinks that might compress her nerves. But that wouldn't be my issue. I do have a habit of tensing my back. Maybe my muscle tension causes it? Or maybe it's linked to some of my other surprising and weird symptoms.
How do you treat it?
First, you should see someone who deals with back and spine issues, like an orthopedic surgeon.1 They can tell you if you have a serious problem that needs fixing.
But here are some other things your doctor may try:1
- Steroid or capsicum creams
- Immune suppressive gels (I use something called tacrolimus.)
- Nerve drugs, like gabapentin
- Physical therapy
- Nerve blocks
- Transcutaneous electrical nerve stimulation (TENS)
You may not need to treat your symptoms. But it's always worth bringing up with your doctor. They might be able to help in ways you hadn't thought about before.
Has insurance ever slowed or stopped your endometriosis healthcare journey?