#FibromyalgiaAwareness 💜 | My Story Behind Every Symptom

I saw this post in one of the fibromyalgia support groups I’m part of, and as I read through each of these very real symptoms, I couldn’t help but remember the first time I experienced every single one of them. It brought back so much. I wanted to share it...not just for awareness, but for anyone who doesn’t understand what it’s like, or for those who do and live with it every day. Whether you have fibromyalgia yourself, know someone who does, or are just trying to better understand an invisible illness- This is for you. 💜

I’ll be honest...Fibromyalgia is one of the most frustrating diagnoses out there. It doesn’t come with a cure. It doesn’t come with a clear answer. Sometimes, it doesn’t even feel like a diagnosis. It feels like a label for “we don’t know what’s wrong with you, so here’s a name for the chaos.” All they can do is offer medications to treat the symptoms...It can feel like a never-ending list of pills. But that doesn’t mean it’s not real. It just means the system doesn’t know how to treat something so complex. Fibromyalgia means something is wrong. And I live with that truth every single day. I didn’t just wake up one day and get diagnosed with fibromyalgia. It's been years of appointments, symptoms that made no sense, trial-and-error medications, and terrifying moments where I genuinely thought something was seriously wrong...

I remember the first time each symptom hit me. I remember how scary, confusing, and isolating it was. I remember how many doctors I saw and how many prescriptions piled up...just trying to survive. And I still live with all of it.

• Back pain-I’ve had it since I was 16 years old. It started after a fall during tumbling class-I fell off a beam one summer, and we thought that was it. I started seeing a chiropractor, and 14 years later, I still do. Last year, one of my chiropractic exams revealed a rotated left hemi-pelvis, and I now wear an SI joint belt daily for the pain, for stability and support. At first, we believed it was just an old injury that never healed properly. But over time, the pain spread. It became chronic. It started affecting other areas of my body. Turns out, that injury may have been the spark-but the fire was fibromyalgia

• Migraines-My first bad one was at 17. It lasted 48 hours. My mom Stacy Self rushed me to the ER where I got my first migraine cocktail. I’ve been rushed to the ER many times since then for migraines that wouldn't let up. Just last night, I almost went again. I fought going because it was 3 a.m and My God, I've just been too many times. I fight going when I can. I took Rizatriptan, and did all my usual migraine remedies: applying CBD topical cream and Biofreeze all over my neck, shoulders, temples, and head. My husband, even though it was a work night, massaged my neck in the middle of the night because the pain was THAT bad. I forced myself into a shower at 3 a.m and put a thera ice cap over my head and cried myself to sleep praying it goes away while simultaneously shocking my spine with my TENS unit just to sleep after taking tizanidine for the pain like I do...every night.

• Swollen lymph nodes with no other illness- I remember making an appointment, thinking I was sick. I wasn’t. But I was given antibiotics just to calm the swelling and pain. Turns out...it's just another fibromyalgia symptom.

• Chest pain & panic attacks- My husband has rushed me to the hospital more than once. There have also been times paramedics have shown up at our home just to check my heart-because the panic attacks, chest tightness, and shortness of breath were that severe. During one of those visits, they discovered that my heart rate had dropped to 11 beats below the average resting rate. It turned out to be a dangerous mix of medications I was on, along with CBD, which are all central nervous system depressants. I had to immediately stop the CBD and adjust my medications. It’s terrifying how easily things can go wrong when your body is this sensitive. I still experience panic attacks and chest pain and take medication for it...Just turns out the med I'm on also lowers heart rate. I have to be extremely careful.

• Nausea -I’ve been prescribed Zofran. I keep it nearby.

•Sensitivity to light & sound- Bright lights feel like they pierce right through my eyes, and loud or layered sounds can overwhelm my entire nervous system. We don’t even use overhead lights in our home. Only soft lamps or candlelight-Because anything harsher is just too much. If we do turn on a ceiling light to search for something, it’s only for a few seconds, and even then, it physically hurts on bad days then I pull my ice cap over my eyes just to make it stop. I used to think I was just overly sensitive… Maybe had a Sensitivity disorder or something...but it’s just another fibromyalgia symptom

•Urinary symptoms, Menstrual issues & bowel issues- I’ve been seen for urinary tract infections, and even considered having lactose intolerance or endometriosis. Which are all random and exhausting, and the urgency, frequency, and pain can be incredibly disruptive.

• Sleep issues & fatigue- I’ve been prescribed sleep meds, and I take melatonin religiously...but even after a full night’s sleep, I still wake up exhausted.

• Hair loss- It scared my husband so bad seeing ao much hair in the shower drain he thought I had cancer. The shedding is so severe it becomes another symptom to chase.

• Dizziness and clumsiness This is a daily occurrence. I drop things constantly. Break things, bump into corners, and walls, trip over nothing, and sometimes lose my balance in the middle of a normal day. I get very dizzy and have to pause between basic tasks, sit down, and let my body catch up to what I’m trying to do. At first, I thought maybe it was vertigo or something, Turns out, it’s another symptom of fibromyalgia.

•Dry mouth, dry eyes, and vision problems- My eyes get so dry and irritated that I’m constantly rubbing them, blinking excessively, and sometimes even dealing with eye twitching. My mouth feels like it’s dry no matter how much water I drink sometimes. I used to think it was allergies or dehydration-but it’s not. It’s fibromyalgia. I've even called 911 before because I lost vision temporarily and was rushed to the ER. Sometimes I see black/white floaties. It comes and goes randomly.

• Muscle & joint pain- I’ve been getting massages since I was 16. My husband helps, I use a massage gun, and my chiropractor works on me regularly along with my physical therapists that I see twice a week. Land and Aquatic.

• Stiffness, spasms, numbness, and twitching- I've been prescribed muscle relaxers and take them daily just to function for years.

• Itching-There have been times I thought I was having an allergic reaction or something was wrong with my skin. I considered seeing a dermatologist

We even changed detergents. Turns out, it’s another fibromyalgia symptom too.

•Cognitive Difficulties, Confusion, Word Mix-Ups, Poor Concentration- These symptoms have gotten dramatically worse over the last few years. I was so scared at one point, I truly thought I might be developing early dementia. My husband thought the same thing, especially given my family history on both sides. I experience all of it: forgetting simple things, struggling to concentrate, and mixing up my words in ways I don’t even notice in the moment. Just the other day, I thought one word but wrote down a completely different one-without realizing it until later. I have to ask people to repeat things constantly. And I mess up my words so much that it’s often brushed off as “quirky Kristen.” But it’s not just a personality quirk. It’s fibromyalgia. And when your brain doesn’t feel like it’s working the way it used to, it’s not just frustrating-it’s terrifying especially at 30 years old...

And then there was the day I thought I had just caught my husband's stomach bug-he was sick, and I assumed I’d just picked it up. I was nauseous, vomiting, in pain, and weak. But what I didn’t know was that it wasn’t just a bug. It put me in the hospital for 4 days. Doctors discovered my kidneys were failing, and I was suddenly in a fight for my life. They worked tirelessly around the clock to reverse the damage and keep me from needing dialysis at just 28 years old. That was one of the scariest moments of my life.

Another thing that’s hard to explain and harder to live with... is how unpredictable my body can be. My temperature shifts constantly: one moment I’m shivering and wrapped in blankets, the next I’m overheating and drenched in sweat without warning. I was diagnosed with anemia in 2013, which only adds to the fatigue and weakness I already face...I bruise extremely easily, sometimes from even the gentlest pressure or touch...especially after using a massage gun on my legs for relief (Restless Leg syndrome) and (Tendonitis pain) My most recent video shows seventeen visible bruises scattered across my body. I also have scars not just from pain relief tools, but from surgeries too. Two years ago, I had tendon surgery on my left wrist after battling intense tendon pain that became impossible to manage. My weight has fluctuated significantly over the years despite consistent effort, and diet changes and it’s taken a toll mentally and physicall Some days it feels like my body is at war with itself. There have been days I just didn't want to go on anymore...Those days and thoughts happen more than I'd like to admit...as even now when typing this, I'm in pain. I am always...In Pain...

There's nothing anyone can do. No pill. No aid. No visit. No test. No appointment. No therapy...

Nothing.

All I can do is keep showing up and pushing through.

I’m not listing these for pity. I’m listing them because this IS fibromyalgia. It’s not “just pain.” It’s not in my head. These are real symptoms that I’ve spent YEARS trying to manage, explain, and get help for. Ask my mom who's been there through it all and Adrian Scott who's been there through it the last almost 5 years...

👉 Just look at how many doctors and specialists I’ve had to deal with to even begin managing this:

Chiropractor (for musculoskeletal pain)

Neurologist (for migraines, Memory, and dizziness)

Ophthalmologist (vision issues, migraines etc)

Emergency Room doctors (multiple times for migraines, chest pain, heart rate issues, kidney failure)

Primary care physician (referrals, prescriptions, inflammation, UTI's, Illness, tender point pain tests,blood tests and more)

Cardiologist (chest pain, abnormal heart rate)

Gastroenterologist (bowel issues, nausea, stomach pain)

Gynecologist (for period/Sex pain/endometriosis concerns)

Allergist/immunologist (for unexplained swollen glands, Allergic reactions and food sensitivities)

Psychiatrist and therapist (for panic attacks, anxiety, and Depression)

Massage therapist & physical therapist (for widespread pain, muscle stiffness, spasms etc)

Orthopedic surgeon (for left wrist tendon surgery two years ago and ongoing joint pain support

Podiatrist (for plantar fasciitis and foot pain management)

💔 It’s exhausting. Not just physically-but emotionally, mentally, spiritually, and financially. The pain is constant. The symptoms shift. The appointments never stop.

But I’m still here.

Still fighting.

Still showing up.

Still learning what works and what doesn’t.

If you live with fibromyalgia...or know someone who does...I hope this gives you perspective. You’re not lazy. You’re not dramatic. You’re not exaggerating. You’re carrying a whole body of invisible symptoms every single day.

💜 Be kind to those you don’t understand. Chronic illness is a full-time job.

#FibroWarrior #InvisibleIllness #ChronicPain #ThisIsMyReality #YouAreNotAlone

Scripture to carry with you...

"But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." -2 Corinthians 12:9

Kristen, Unfiltered Xo 💋