I LOVE vampires. Yep. All caps LOVE vampires. The broody, not the brutal, kind. The kind who pretend to be badass, but are really good-to-the-indestructible-bone beneath those hard-packed muscles and chiseled good looks.
In fact, I love all badass mystical creatures – werewolves, shifters, witches, warlocks, demons. Male. Female. Other. Doesn’t matter. They’re all tragically romantic to me.
I LOVE their hunters, too. Witchers, Winchesters, Demon Slayers, *special shout out to Buffy the (ultimate) Vampire Slayer. Yeah, I love them all. Hardcore. Who doesn’t relish watching an epic good versus evil battle?
Although…Dean Winchester comin’ in hot for Damon Salvatore? No. No. NO! Don’t make me choose!
So? What the DEVIL does this have to do with chronic pain?
Glad you asked.
I was in my early twenties when a colleague joked I must be a vampire because I wore sunglasses on cloudy days. I remember the conversation because – HELLO – vampire wannabe! Sadly, I had to explain I was a mere mortal with sensitive to light eyeballs. Too much exposure to bright(ish) light and my eyes would spring a leak.
Nothing to worry about, right?
Yeah. Sure. Right.
The general aches and pains I was feeling in my neck? Those I attributed to partying too hard. You probably can’t picture this, but I was a heavy metal headbanger back in the day. Guns and Roses, Skid Row, Def Leopard, Metallica, Ozzy Osborne. The louder and harder-rocking the club – the happier I was to be there.
Ahh, to be twenty again. Young, oblivious, and immortal – that was me.
Then I jumped off a cliff.
Literally.
Trust me, landing the wrong way on water from a fairly substantial height is the equivalent of leaping from a third-floor balcony and slamming butt first onto a concrete sidewalk.
It fucking hurts.
Don’t even get me started on the accidental enema.
Long story short, I end up in my doctor’s office with a sore tailbone. She told me to park my butt on a donut for a couple of days. Well, guess what, the pain NEVER went away, and frankly, shit went downhill from there.
Fast-forward ten years, two babies, and a Fibromyalgia diagnosis later, my ass still hurt. And now, my husband was comparing me to an 85-year-old lady when I got out of bed in the morning.
Yes, indeed, he likes to live life on the edge.
Thing is…he wasn’t wrong. I was stiff, sore, hunched over. My back wouldn’t straighten. My ankles refused to bend. I hobbled to the bathroom, stumbled to the kitchen. I kept going…because I had to. Eventually, my joints would loosen, and the pain would become tolerable. Repeat the scenario the next morning. And the next. And the next. My own personal Ground Hog Day. Yippee!
Around this time, I stopped sleeping through the night. If the pain in my neck, shoulders, and back didn’t wake me, the severe night sweats sure did. Waking up at two am tangled in wet linen is disgusting – seriously – disgusting. When I raised the issue with my doctor, she said I was too young for menopause. No other causes were investigated.
By the time I hit my forties, body parts had started to malfunction.
Huh? What?
Let me explain. I experienced multiple bouts of gout, plantar fasciitis, Achilles heel, and irritable bowel. I developed painfully dry/scaly patches of skin on my thighs and shoulder blades. I advised my doctor, bought prescription creams, tried to eat better, got orthotics, lost weight.
My pain issues persisted.
When I was unable to take my t-shirt off because I couldn’t rotate my shoulders or lift my arms over my head, my doctor suspected bursitis. I was sent for physiotherapy. Eventually, my mobility returned, but the pain remained.
When my hip joint seized mid-holiday cruise, I limped around for days. After my vacation, I was sent for x-rays. Nothing unusual showed up. My hips continued to be problematic, the pain ongoing.
When my back rejected the idea of supporting me in an upright position, I spent an excruciating eight days lying flat in bed. After multiple trips to the emergency room and my doctor’s office, I was prescribed Hydromorphone (painkiller) and Cyclobenzaprine (muscle relaxant). No cause was determined.
By mid-forty, I had gradually lost enough hearing in both ears to have significant difficulty understanding people. I broke down. I got hearing aids. I hate wearing them – if you need to get my attention, please feel free to shout at me – in the kindest way possible.
In January 2019, at the age of forty-nine, I was home alone when severe chest pain dropped me like a sack of hammers. That was crazy scary. In between attacks, I crawled to the bedroom. Got my phone. Called an ambulance. I spent a week in the hospital. Had an angiogram. My heart was good. I saw my doctor, she sent me for an MRI, ultrasound, and blood work. No cause was determined.
By the fall of 2019, I couldn’t take it anymore. I was in pain, head to toe. I couldn’t sit, I couldn’t stand, and resting made things worse. I went back to my doctor. She decided it was time for some bone scans. *Cue internal cheering because finally – FINALLY – I would get some answers. Right?
RIGHT?
Imagine my disappointment when my doctor said my bone scans were mostly normal. Mostly. Images showed bone spurs in my lower back. “Probably the early stages of Osteoarthritis,” she said.
WTF? Early stages? I’ve been in pain for years!
My bone scans did, however, indicate inflammation and bone spurs on and around my right orbital bone. This is not normal, and I was sent for additional x-rays of my head.
In the meantime, I went home and Googled arthritis. This led me to the Canadian Arthritis Society, and the Ankylosing Spondylitis (AS) symptoms page. From there, I jumped to the Spondylitis Association of America page. Eventually, I found the AnkylosingSpondylitis.net website.
I discovered the following:
AS symptoms usually appear before the age of forty-five and can affect the spine, neck, ribs, chest, shoulders, hips, thighs, hands, feet, eyes, and ears.
Signs and symptoms include:
- General discomfort
- Widespread pain or pain in multiple areas at once
- Pain in the lower back, hips, and buttocks
- Stiffness in the lower back, hips, and buttocks, especially in the morning or after periods of rest
- Neck pain, especially in women
- Ligament and tendon pain
- Extreme fatigue
- Night sweats
- Psoriasis or itchy and patchy skin
- Sensitivity to bright light and/or watery eyes
- Chest wall pain that can mimic a heart attack
- Insertional Achilles tendonitis or Achilles heel pain
- Plantar fasciitis
- Bone spurs or formation of new bone, especially in the lower back
- Bowel inflammation
- Eye inflammation
- Heart inflammation
- Hearing Loss
- And get this… *people with AS are at higher risk of developing Fibromyalgia
Uhh…I’m no doctor, but it seems to me my medical history indicates I have, at one point or another, suffered from nearly every single Ankylosing Spondylitis symptom. Mentally, things click into place. My random symptoms of widespread pain don’t seem so random anymore.
Soon after, my final X-ray results come in. My doctor’s office calls to confirm there is no reason for concern. *In other words, I don’t have cancer. Do I have any questions or concerns?
Nope. No questions. No concerns. But I do want an immediate referral to a rheumatologist BECAUSE I’M PRETTY DAMN SURE SOMEONE NEEDS TO CONFIRM AN ANKYLOSING SPONDYLITIS DIAGNOSIS.
Ahem, sorry for shouting. I’m mad (mostly at myself, but yes my doctor is taking a hit too). We’ll get to that in another blog – this one’s waaaay too long already.
I’m also excited, and nervous, because I got the referral I so desperately needed.
My first appointment with the rheumatologist is this week, and I want to LOVE him like he’s the last vampire on earth! I want him to confirm my AS diagnosis, and I want him to take my pain away. Yeah, that last bit…I know it’s not possible, but I wouldn’t be the girl wearing rose-colored glasses at the back of the plane if I didn’t dream big.
I’ll let you know how it goes, but while we wait, don’t forget about the Sharing is Caring Giveaway! Prize packages are coming together – will share pictures soon! Hit the subscribe button, as well as those share icons below for a chance to win.
Also, if you have any suggestions on how to prepare for my first appointment with the rheumatologist drop them in the comments below. Still need all the help I can get!
Until the next blog – peace out pain sufferers.
Current pain level 8/10.
You are definitely a kick ass warrior Edith!
I have no advice for you except don’t leave the doctor’s office until you get the answers or tests you need.
LOL!
*Puts rheumatologist in headlock, demands magic pill, gets arrested.
– Thanks, Lyse!
I second what Lyse just said ! So glad you did your research, stuck up for yourself and got your referral. YAY for you! A lesson learned and one nobody teaches us. It’s the only way in this day of modern technology and medical cutbacks…
Thank you so much for sharing your story Edith, makes me feel so not alone. March on Warrior cousin.
Thanks, Alice. Because it is not a visible illness, I have struggled for years to find the right way to advocate for myself when it comes to my chronic pain. Also, for a foul mouthed, mother, wife, writer, and friend (not necessarily in that order), I don’t like confrontation. Don’t even get me started on asking for what I want/what I need! Hoping to change that with this blog! Wishing you a low pain day!
Remember only the squeaky wheel gets the oil….speak your mind and don’t minimize the pain/symptoms!
Also, research shows there is a gender and attractiveness bias in pain treatment. Women aren’t taken as seriously and are prescribed psychiatric medication more then pain medications (in comparison to men). So women can’t be overly emotional while at the same time having to clearly let the Dr. know how bad things are…..now there’s a challenge. In terms of attractiveness there’s a “beautiful is healthy” stereotype – if you look too good you can’t possibly be in pain. So skip the makeup and maybe don’t brush your hair that day 😉
https://www.independent.co.uk/life-style/health-and-families/health-news/how-sexist-stereotypes-mean-doctors-ignore-womens-pain-a7157931.html
https://www.ncbi.nlm.nih.gov/pubmed/24611920
OMG! This is the best advice EVER! I’ll make sure to showcase my penguin waddle and difficulty sitting for extended periods due to a sore patootie, too. Thanks for the links. These are awesome.
Yup journal times dates symptoms food, everything, and don’t go there looking pretty they won’t take you seriously. Good luck with the appointment!
*Wipes gunk out of eyes. *Puts stretchy pants on. *Goes to appointment. *Feels a blog post coming on.
Seriously though? How sad is it that to (hopefully) get better medical care women still have to worry about how they look!
❤️
Hi Edith…love your posts…I have suffered with a lot of pain also for many years…after reading your posts I realize that I also wasn’t taken seriously…I remember when I asked my doctor to see a rheumatologist that she she didn’t believe that was necessary…I have osteoarthritis, irritable bowel syndrome,(doesn’t seem to matter what I eat!) fatigue, sleeplessness, anxiety, loss of muscles, opmd, night sweats, loss of bladder control, etc,etc,,,
Struggling finding a new doctor after mine of over 30 years retired…got one for 1 appt only (went on maternity leave and still not back) then had a nurse practitioner, who was awesome and a female doctor signing off for her..nurse left and doctor found out she had cancer and so is not practicing is there is talk of closing the clinic for lack of staff!…back to square one…also, can’t seem to be able to get my medical file…what a f@#$@ed up system Manitoba has…I take Celebrex, paroxetine (anxiety) zopiclone (sleeping pill), esomeprazole(esophagus) levothyroxine(thyroid)rosuvastatin(cholesterol), 81 mg aspirin, vitaminD and vitaminC…also take cannabis oil / thc …still have pain and some days are really bad…
Oil with thc
As we say, Golden Age is not so golden!…
Hi Leonne,
Thanks for sharing. So sorry to hear about your struggle to replace your doctor. So many are facing that struggle here in Ontario as well, so you’re not alone in that respect. The doctor/patient relationship is so important, critical even if you are a person who suffers from chronic pain. It’s why I’m calling my rheumatologist my wellness partner. We need a medical person in our lives to advocate for us, and to help us through the system, especially when we’re not getting any traction on our own. I think it’s sometimes why we settle for some medical support over none at all – better to stick with the doctor you know even if they’re not giving you what you need over having no doctor at all – seems to be a common thread. When I asked my doctor for a referral to a pain clinic she said don’t bother – you’ll never get in. When I got an appointment with the 2nd rheumatologist I was referred to she was “surprised” because they’re so busy…
Hope you find your wellness partner soon! Also hoping we can grow this blog big enough that one day we can help each other find good support in our local communities.
Wishing you a pain free week as possible.
Thank you so much for your comment, and welcome to the tribe!