Allison Arnold - Migraine Coach

I Was Diagnosed With Fibromyalgia At 39. I'm 52 Now. My Rheumatologist Never Asked Me About My Headaches.

I was diagnosed with Fibromyalgia at 39. I'm 52 now. Turns out I never had Fibromyalgia at all. I had something nobody screened me for, hiding in plain sight in the three or four "hormonal headaches" I had every month. For thirteen years, I "managed" a condition I didn't actually have. Thirteen years on the nerve-pain preventive that made me gain twenty-eight pounds in the first six months and never let me lose it. Thirteen years on the mild opioid my pain clinic put me on when the first preventive stopped working, which made me constipated for the entirety of my forties. Thirteen years of low-dose antidepressants: first the seizure-med preventive doctors also prescribe for fibro, then two different antidepressant preventives that are supposed to help with widespread pain. None of them made a meaningful difference. All of them made me foggy. Thirteen years of physical therapy twice a week. Aqua therapy on Tuesdays. Trigger-point injections at the pain clinic every six weeks. A TENS unit I wore under my clothes to work. Thirteen years of being handed a new supplement: malic acid, D-ribose, SAMe, PEA, palmitoylethanolamide, curcumin, low-dose naltrexone and told to "just give it time." I did everything they asked. I did the fibro-recommended anti-inflammatory diet. Then gluten-free. Then autoimmune paleo. Then FODMAP elimination. Then a strict Mediterranean protocol. I took up gentle yoga. When gentle yoga was too much, I took up chair yoga. When chair yoga made me hurt for two days after each session, I took up guided meditation instead. I did cognitive behavioral therapy for chronic pain. Weekly. For four years. My therapist was kind. She said I was doing everything right. I paid $1,800 for a functional medicine workup that included a full stool panel, a heavy-metal test, a mycotoxin panel, and a food-sensitivity panel from a lab in Colorado. Every result came back "elevated" for something and my functional medicine doctor put me on a $470-a-month supplement stack to "address the root cause." I stayed on that stack for eleven months. I did not feel any different. I did medical cannabis. I did a $1,200 red-light-therapy bed at a wellness studio. I did dry needling. I did cupping. I did a $260 vagus nerve stimulator that clipped to my ear. When my primary care doctor ran out of ideas, she referred me to a rheumatologist in Boston who was supposedly one of the best fibro specialists on the East Coast. He saw me for forty minutes. He confirmed the diagnosis. He told me fibromyalgia is a central sensitization disorder that we do not fully understand and the goal is management, not cure. He gave me a printout on "living with fibromyalgia" and told me to come back in six months. "Central sensitization." That phrase stayed in my head for thirteen years. I felt like I was crazy. The tests were normal. The doctors were not worried. But every single day, my body hurt in places that had no reason to hurt. By the time my alarm went off, I was already stiff. My hips would not rotate. My shoulders would not lift. I would lie in bed for twenty minutes doing the "morning stretch routine" my physical therapist gave me, then swing my legs to the floor and stand up like a woman thirty years older than I was. Getting into the shower was a production. The water pressure hurt my back. I turned it down. Then I turned it down again. Then I bought a rain-shower head that was less intense. By 10 a.m. I would be sore in my elbows, my wrists, and the outside of both thighs. Just from sitting at my desk. By 2 p.m. the pain would migrate. Some days it was my knees. Some days it was my ribs. Some days it was the arch of my left foot. It was never in the same place two days in a row, which was the thing that made rheumatologists nod knowingly and say "yes, that's fibro." By 4 p.m. I would be counting the hours until I could get in a hot bath. I took a hot bath every night at 8 p.m. for thirteen years. My husband started dinner without me because I could not stand at the counter to help. And the math never stopped. If I garden for an hour, I will need two days in bed. If I go to my niece's baby shower, I will not be able to sit through the whole thing and will have to leave early. If I sleep on my left side, my left shoulder will hurt for the whole next day. If I try to carry a bag of groceries with one arm, my elbow will hurt for the rest of the week. I stopped saying yes to anything physical. Hiking. Bike rides. Beach trips with my sister's family, because sand is too soft to walk on and it made my hips ache. I would be mid-conversation and my jaw would tighten from clenching against pain I was not letting show on my face. My teeth started to feel loose from the clenching. My dentist mentioned it. I also had what I called my "hormonal headaches" about three or four times a month. Pressure behind my right eye. Tightness across my forehead. Sometimes nausea. Sometimes light bothered me. They usually came after my worst pain-flare days. I would take an over-the-counter combination painkiller, lie down for a few hours, and push through. Nobody ever asked me about those headaches in thirteen years. I never thought to mention them to my rheumatologist. I had been told I had fibromyalgia. The headaches felt like a separate thing. Probably hormones. Probably the tension from being in pain. Probably just something women get. I looked fine on the outside. Inside I ached in fourteen different places every day and none of them had a reason. And every specialist just nodded. "That's fibro. Central sensitization. Try more gentle movement." I tried more gentle movement. I paid for it with two days on the couch. I started to believe this was just my life now. That I would spend the rest of my life on nerve-pain preventives that made me fog-brained and heavy, and taking hot baths at 8 p.m. because I could not be standing. Then a woman in my pilates class — the gentle senior pilates class my physical therapist finally cleared me for — said something no rheumatologist ever had. Her name is Jean. She is 63. She teaches the class. Retired ICU nurse. Certified as a Migraine coach four years ago after her own daughter got diagnosed with chronic Migraine at 29. I stayed after class one Thursday morning to help her fold the mats. I was rubbing the back of my neck because the pressure behind my eye was starting up again. She noticed. She stopped folding. "Diane. Do you get headaches?" I laughed. "Three or four a month. But that is not the problem. The problem is the fibro." She sat down on a bolster cushion and patted the one next to her. "What kind of headaches?" I told her. Pressure behind one eye. Tightness across the forehead. Sometimes nausea. They usually hit after my worst pain-flare days. She was quiet for a moment. "Diane. Those are not hormonal headaches. Those are Migraines. And the fibromyalgia may not be a separate diagnosis. Central sensitization from chronic Migraine can produce widespread body pain that is indistinguishable from fibromyalgia to a rheumatologist who is not asking about your headaches." I stared at her. She walked me through it in the empty studio for the next hour. The trigeminal nerve is the largest cranial nerve in your face. When it becomes chronically sensitized, which is the definition of Migraine, the sensitization does not stay in the face. It spreads. Through a process called central sensitization, the same nervous system that is firing at the trigeminal nerve becomes hyperreactive throughout the spinal cord. Pain thresholds drop. Nerves in your hips, your shoulders, your knees start firing at lower and lower thresholds. Widespread body pain. Chronic. Migratory. No obvious cause. Which is exactly the description of fibromyalgia. The cascade happens in three phases. Phase 1: the prodrome. 20 to 40 minutes before any head pain. Widespread body ache intensifies here. The pain-flare I thought was random started here. Phase 2: the headache. What I had been calling hormonal. Phase 3: the postdrome. 24 to 72 hours after. Full-body sensitization. The two days on the couch. The stiffness. The migrating aches. What I had been calling "just a bad fibro week." I sat there with my hands on my knees. She kept going. "If you have three or four Migraines a month, Diane, you have roughly twelve to twenty days in some phase of the cascade. Your central sensitization never gets to reset. It just keeps ramping. Your fibromyalgia is not a separate disease. Your fibromyalgia may be what happens when a trigeminal cascade fires uninterrupted for years and the sensitization spreads." "You don't have fibromyalgia. You have a chronically sensitized trigeminal nerve that has been driving central sensitization throughout your entire nervous system for thirteen years." She told me the rheumatology diagnosis of fibromyalgia is a diagnosis of exclusion. It is what specialists say when they cannot find another explanation. The eighteen "tender points" that used to define the diagnosis are gone from the current criteria. The current criteria are essentially: widespread pain, fatigue, and normal tests. Which is exactly what an unrecognized trigeminal cascade produces if you never think to ask about the headaches. I drove home in silence. I sat in my driveway for twenty minutes. Thirteen years. Four rheumatologists. Two pain clinics. Every test coming back normal. And nobody had ever asked me whether the three or four headaches I had each month might be connected to the thirteen years of full-body pain I had been paying to have "managed." I texted Jean the next morning. "Okay. If you're right. What do I actually do?" She called me on her lunch break. "You need to interrupt the trigeminal cascade at the source. Not the fibro pain. Not the tender points. The nerve itself. If you calm the trigeminal, the central sensitization has a chance to walk back." She told me about a topical roll-on developed by a neurologist named Dr. Fiora Laurent, who suffers from Migraines herself. Five ingredients chosen for trigeminal calming. Magnesium glycinate for nerve relaxation. Wild peppermint and menthol crystals for the TRPM8 cooling receptors. Chamomile and feverfew extract for chronic reactivity reduction over time. Applied to the three points where the trigeminal nerve surfaces closest to the skin. Temples. Behind the ears. Base of the skull. The nerve sits 2 millimeters under the skin at those points. A topical reaches it in 90 seconds. No 45-minute oral absorption gap. No interaction with the nerve-pain preventive I was still on. No interaction with the antidepressant preventive. No interaction with anything. It was called Florus. "You've been treating widespread body pain with drugs that dampen the entire spinal cord. The cascade keeps re-firing at the trigeminal. The sensitization keeps ramping. If you can interrupt the cascade in the prodrome window, before the sympathetic activation spreads, you give your central sensitization a chance to reset. The body pain is downstream. The nerve is upstream." She had been working with fibromyalgia patients for four years. About half the ones she saw who had been diagnosed with fibromyalgia had the same headache pattern I did and had never been screened. She said the ones who caught it early, before they had been sensitized for a decade, often saw their fibro-pattern pain reduce dramatically over a few months. I sat with that for two days. Then I ordered the bottle. First time I felt the pain starting to build was a Wednesday afternoon. I had been at my desk since 9. By 2 p.m. my elbows and my hips were burning and my temples were pressing in. Thirteen years of muscle memory said take another nerve-pain pill and get in the bath. I rolled Florus across my temples, behind both ears, down the base of my skull instead. Ten seconds. Within 90 seconds I felt the cooling reach somewhere deeper than skin. I sat at my desk and I waited. The temple pressure faded first. Then the burn in my elbows. Then the aching in my hips. By 5 p.m. I stood up from my desk without needing to catch my breath. I walked into the kitchen. I opened the fridge. I did not need to lean on the counter. I stood there holding a bag of spinach and I started crying because I had not stood in my own kitchen without pain in eleven years. Week 1: I caught two prodromes with Florus. Both stopped. Neither developed into the headache I had been calling "hormonal." Neither was followed by the 48-hour body-pain flare I had assumed was "just my fibro." Week 2: I gardened for an hour. I did not need two days on the couch to recover. I took a normal shower the next morning. Week 3: I went to my nephew's soccer game. I sat in the stands for the full game. I walked back to my car without limping. Week 5: I lifted my grandson. He is four. I had not lifted him in three years. Week 8: I stopped needing the 8 p.m. bath. I noticed I had not run one in eleven days. Week 12: I went back to my rheumatologist. She looked at my new symptom log. She asked what changed. I told her about my pilates instructor. The trigeminal cascade. Central sensitization. The prodrome window. The three application points. The topical that reaches the nerve in 90 seconds. She listened. She was quiet for a long time. Then she said, "I am going to start asking my fibromyalgia patients about headaches. I should have been asking all along." Six months in: I hiked with my sister and her husband on a Saturday morning. Two miles. Uphill. I did not stop once. I did not pay for it the next day. My sister looked at me at the trailhead when we got back. She said, "Diane. You did all of it." I had to walk over to the parking lot and sit on the guardrail for a few minutes because I could not stop crying. I do not have fibromyalgia. I never had fibromyalgia. I had thirteen years of an unrecognized trigeminal cascade firing low-grade three to four times a month, driving central sensitization throughout my entire nervous system, producing widespread body pain that everyone, including me, had been calling fibromyalgia. And not one person in a white coat had thought to ask me about my headaches. If you have been diagnosed with fibromyalgia. If you have tried the nerve-pain preventives and the antidepressant preventives and the injections and the pain clinics and nothing has held. If your rheumatologist has told you it is central sensitization and there is no cure. If you take a hot bath every night because it is the only thing that gets you loose. If you have stopped hiking, gardening, lifting your grandchildren. If you also have what you call "hormonal headaches" or "stress headaches" or "sinus days" three or four times a month and you have never connected them to the body pain. I am not saying you definitely have undiagnosed Migraine. I am not your doctor. I am saying I spent thirteen years being treated for a diagnosis of exclusion, while the real cause was firing in my trigeminal nerve every third week and nobody, not a single rheumatologist, ever asked me about the headaches. Florus is built for the cascade itself. Skin to nerve in 90 seconds. Three application points. Five ingredients. The full breakdown is in the article below. 7,405 five-star reviews. 90-day money-back guarantee. Three full months. If it does not change how you feel, you send it back. After thirteen years of pain clinics and daily preventives, what is three more months? 👉 Every Migraine tool you have works downstream of the source. Here is what works at it: https://florusrelief.com/blogs/news/every-migraine-tool-you-have-works-downstream-of-the-source-here-is-what-works-at-it You don't have to keep managing a condition you might not actually have. P.S. I bought Jean a bouquet of flowers the month after I started feeling better. She refused a bigger gift. She said the only payment she wanted was for me to tell other women. So I am telling you. If you have been diagnosed with fibromyalgia and it has been years and nothing has held, please consider the possibility that your central sensitization is being driven by an unrecognized trigeminal cascade. P.P.S. There are cheap peppermint roll-ons on Amazon that look almost identical to Florus. They are synthetic peppermint fragrance oil in a tube. They contain no therapeutic-grade magnesium glycinate or real feverfew extract. A woman in my fibro support group tried one for six weeks and it did nothing. The real Florus is only on the official site. P.P.P.S. I have been off the mild opioid for four months. My pain clinic doctor supervised the taper. He looked at my logs at our last visit and said, "Whatever you found, keep doing it." I keep doing it.