Claire Bennett

Doctors Said Normal. My Neck Disagreed.

The coat hanger pain in my neck and shoulders existed long before it had a name. But the real fear struck one night last March. A fibro flare hit me so hard that my teeth ached and my scalp hurt to touch. Most days, I function at a 7 or 8. That night, the pain soared past a 9. It felt different in every spot: burning like sunburn in one area, shocking like a live wire in another, and stabbing in my joints. But my neck was the worst. It hurt more than everything else combined. It felt like the coat hanger pain was holding up the whole flare. I got up for water but had to sit down halfway to the kitchen. I felt dizzy, like I had the flu, but there were no symptoms—no fever, nothing a doctor could identify. As I lay back down, it hit me: that wasn’t just a bad night. It was a reminder of how bad it could really get. Nothing was stopping it from happening again. It started with a car accident when I was 32 — whiplash, they said, six weeks. Six weeks turned into years before anyone could explain why my neck never once felt normal again. My neck grinds and cracks with almost every movement I make. Not the kind that cracks once and feels better — it locks right back up a second later, like it never happened. Sometimes it’s so loud that I scare myself a bit. It’s like those chiropractor videos that make me nervous. For a second, I really worry I might hurt myself just by turning my head to check a blind spot. Every massage therapist stopped halfway through a session and said, "What is that? Why is it so crunchy?" I didn't have an answer. I still don't, not really. I've described it to my husband as trying to balance a bowling ball on a matchstick. That's what holding my head up feels like most days by 3pm. Some mornings I wake up feeling like I got run over by a truck. I feel constant, widespread pain that won’t stay still. It begins in my neck each morning. I can ease it a bit, but within an hour, it tightens up again. By 10 a.m., I often have a headache. By the afternoon it's moved down into my lower back, and by evening it's in my legs and feet. The pain follows me all day. It sticks to my upper back, like a coat hanger. It won’t leave, even though there’s no sign of it. No fever, no swelling—nothing to prove it’s real. I've had imaging done multiple times. An osteopath looked at my cervical spine. There was nothing wrong—no structural issues, no pinched nerves, and no need for a surgeon. "It's just fibro," they said. Which somehow felt like both nothing and everything at once. I tried the creams that just numbed it. Love my TENS but the pads that never stayed put, and the tangled wires are just cherry at the top. It seems the relief fade as time progress. I just didn't bother to keep using it for having to re-stick the pads every single night. I've tried acupuncture and dry needling. Some sessions make me feel relaxed for a day, but others leave me feeling worse. I never know what to expect. Trigger point injections can be very painful. They only helped for about two hours, and each session costs a lot. The meds—Lyrica, gaba, and Cymbalta—fogged my brain. They packed on weight I couldn’t lose, made me feel like a zombie, and zapped my energy. What's worse is it drains all of my libido. I need to fake it in front of my husband and he senses it. Every single one took something back eventually — money, or a few painful days, or the real me. There's a part of this I don't say out loud very often. Somewhere in the last few years, sex stopped feeling like something good and started feeling like something to get through. The meds dulled everything. It all felt muted and numb. No matter what my husband did, I could only feel the ache underneath. He’s never made me feel bad about it, but that makes the guilt worse. He’s patient and understanding. Still, I feel like I’ve taken something from him that he never asked me to give up. It's not only that, either. My husband used to reach for me in the middle of the night. I began to flinch before I could control it. A light touch felt more like a burn than anything soft or gentle. He stopped reaching after a while. I don't blame him for it. I just miss who I used to be with him, before all of this. A good morning costs me two days later now. I've learned to be suspicious of good days, it seems no relief ever lasts, which is its own kind of exhausting. To be honest I am scared that this is my life from now on, and it will keep getting worse. And the dismissal is a completely separate animal from the pain itself. I dropped a box on my foot in the kitchen a few months ago. By the time we reached A&E, it was purple. I couldn’t move my toe, and it felt numb and tingly. The doctor examined the x-ray and noted swelling but said he "didn't see anything." He sent me home, suggesting it was likely just fibromyalgia. He never looked at my foot. I could walk into that hospital with my leg hanging off, but I’d still get a fibro pamphlet and a reminder to tough it out. When the dismissal comes from people you love it cuts 10 times deeper… One day, I couldn’t even get up to use the bathroom. Getting dressed to sit by the pool felt impossible. "But Mom! It's such a gorgeous day outside and you've been saying you want to get a lot of sun. You are a hermit crab now!" — my daughter, eighteen. "I'm sorry, but I can't make plans because I don't know how I'm going to feel on a certain day. I may be able to make it out to play Minecraft with you later, but that's a huge maybe," I told her. "You are just being lazy, Mom." ……💔 Some days it feels like everything in me has quietly gone out. My spirit included. So I stopped expecting anything to be different, honestly. Not dramatically — I just quietly adjusted what I let myself hope for. I got really good at looking fine, even when I wasn't. I smiled through dinners. I showed up to things. It was easier than explaining myself to people who already thought they knew what was wrong with me. I stopped saying the word "fibromyalgia" to new doctors when I could help it. I know what happens the second I say it. They stop really listening to me. My husband asks how I'm doing. He brings me my heating pad without me asking. He means it, every time. But he still doesn't really know how it feels for me. Most days I'm too tired to explain it to him. The part I really don't say out loud is what I'm scared of underneath all of it. It's not really the pain anymore — I've made a strange kind of peace with that. It's that there's no ceiling on it. This year it's my sister driving me to an appointment. Some years from now, I might need help getting dressed or going to the bathroom. I could become a prisoner in my own home instead of truly living in it. I also fear that my husband may stop being my partner and become just my caregiver... I've learned a lot about other women facing this tough condition. I know I'm not being dramatic. That's just where it goes, if it doesn't stop... Most nights, I'm wide awake at 3 a.m. I count how many hours of sleep I have left. If I get four to six broken hours, I consider that a good night. I usually spend that time in the fibro groups. I'm the one finding studies and sending them to my sister and the girls in my group chat. It's not the other way around. So when they sent me a link about this, I almost didn't open it, mostly out of stubbornness. I'd stopped believing there was anything left to try that I hadn't already tried and paid for in some other way. I looked everything up before I believed it. Turns out fibro doesn't start in the muscles. It starts in the brain and the spine. Somewhere along the way, they learned to turn pain signals up too high. Too high, even when nothing bad is really happening. Hospitals treat this. They turn that signal back down. Normally that means surgery — something put in your spine. But there's a way to do the same thing without surgery. People with fibro are seeing it work. Here's the part that really got me. I spent six years thinking my muscle was broken. It was only part of the problem. I want to be clear — this isn't a cure obviously, nothing is. And it doesn't work exactly the same for everyone. But six months in, here's what actually happened. The first week, I noticed I could wash my hair in the shower without bracing for it first. By week two, my husband said, “You’re not doing the thing with your neck.” I didn’t understand at first, but then I realized I hadn’t been. Around month three, I enjoyed a whole family dinner. I followed the entire conversation from start to finish. Usually, I lose track, but not this time. I didn't say anything about it out loud. I just sat there thinking, oh — there you are. A woman in my fibro group said the pressure behind her eyes vanished. This daily tension disappeared after two weeks. Another member said she finally gets what "restorative" sleep means. It’s not just about more hours; it’s about waking up refreshed after forty-five years of living with fibromyalgia. A few weeks back, my husband reached over in bed. He placed his hand on my shoulder. It felt automatic, like his hand forgot it wasn’t allowed there anymore. I didn't flinch. He went still for a second, like he was waiting for it, and then he said, "You didn't jump." I hadn't even noticed until he said it out loud. I didn't say anything back right away. I just reached over and put my hand on top of his and left it there — something I hadn't done first in longer than I want to admit. I still don't know how much of that is the meds wearing off and how much is this. I no longer feel I owe him a quiet apology each time. For the first time in years, I found myself wanting to be close to him, not just endure it. A few weeks after that, I overheard my husband on the phone with my sister — he didn't know I could hear him from the kitchen. "It feels like I'm starting to get my wife back," he said. I didn't say anything about it to him. I just stood there and let myself have that one. My daughter asked me to sit by the pool with her a few Saturdays ago. This time, it was the real pool, not in Minecraft. At one point she said, "You've been out of your room a lot more lately." I said yeah, I guess I have been. She didn't call me a hermit crab that day. I didn't say anything else about it. I just sat there in the sun a while longer than I needed to. Last Sunday I drove to my sister's because I wanted to — not because she came to get me, which is usually how it goes. Small thing to say out loud. Didn't feel small. I don't say any of that to promise you the same thing. I say it because six months ago I wouldn't have believed any of it was possible for someone like us, and now I do. I think that's the part nobody tells you about getting better from this. It’s not just one big change. It’s many small things adding up quietly. Then, one day, your whole life looks different. For people like us, all we ever wanted was a little relief, a little more often. Turns out that's enough to add up to something that looks like a different life from the outside. The coat hanger pain hasn't disappeared. But most mornings it's gone from an 8 or 9 out of 10 down to something like a 3 or 4 — tolerable instead of unbearable. It doesn't get there first anymore, and when it does show up, it doesn't flatten me the way it used to. I wasn't going to post this — I don't usually talk about the fibro stuff publicly. Many people have asked what changed. So, I decided to write it out instead of repeating myself in six chatboxes. I don't know what tomorrow's going to feel like. But for the first time in a long time, I'm not bracing for the worst version of it before I even open my eyes. Editing to add: Many of you have DM'd asking what it is. Check it out here: [https://aurenovastore.com/products/sereni-stim]. One warning — there are knockoffs of this floating around. I tried to save money by buying a cheaper one from another place. It gave my neck a terrible shock that felt nothing like the real thing. Get it from that link directly, not some cheaper copy. If it doesn’t help, they’ll take it back within 60 days. That’s important to me because I’ve wasted money on things that didn’t work.