As the sun came up in the early hours yesterday morning I found myself also awake. Though my head pain had mostly dissipated as I slept, the aches across my spine and my shoulder grew louder and louder.
I woke up a bit more than I intended, observing as I’d rotate a bit more onto my right arm where the strain was felt.
Maybe this tension that runs from the base of my skull, along the right side of my neck, across to my shoulder and then both down my spine to an old injury and through my shoulder down my entire arm was actually coming from my rotator cuff – something my brother had mentioned as he described similar tightness pulling into his neck muscles.
I stretched my arms and tried to gently massage what I could reach, eventually after an hour or so falling back asleep never really getting comfortable.
It’s been a month now.
I thought with migraines I understood chronic pain, but I’ve come to realize that the migraines do come and go and pain and symptoms are varied. This pain however, this doesn’t stop. And it gnaws away at me.
It started, I’m presuming, with a back spasm that came relatively out of no where Mid-May.
I’d awoken and could tell I’d slept a bit funny. My neck hurt and I remember rubbing some pain cream on it before settling in with my morning coffee. As I finished breakfast and was clearing out the sink my entire upper back froze, across the back of my spine between my shoulder blades I could feel all the muscles seizing up and locking me where I stood. Grasping onto the counter trying to catch my breathe as this pain shot through my entire body.
I was able to flex my back just enough to stand up straight. I grabbed my acupressure mat and laid down on the floor, hoping the pressure of the small plastic spikes would ease the tension, fearing the entire time my back would once again freeze up. The day went on cautiously, a nurse advised me to move as I normally would and that I’d likely had a charlie horse like event in my back which would hurt for the next few days before easing up.
She seemed pretty correct, as the next days went by, I was left with residual muscle tension. I did gentle yoga exercises to stretch out and keep my body moving.
But as the week went on, my arms took on a new type of fatigue. Part of it I equated to shifting in some of the projects I was working on as I was spending more time on my computer. At night as I’d unwind and watch tv I found my hands simply too tired to scroll through social media mindlessly.
That following weekend I found myself in a desperate battle with a very large Elephant Ear Alocasia who had contracted a bad case of spider mites. I’d treated it once and I was getting ready to give it it’s second spray down. Now this plant was roughly 5 feet tall with some leaves over 2 feet across so the process of spraying it down was more intense. Halfway through, I found my entire hand seizing up with a bad trigger finger spasm.
Surely I was overdoing it with the motion and I quickly decided that I ought to take the advice of the physical therapist I’d seen a month or so prior and really commit to doing more strengthening exercises.
I went over some specific stretches for my hands to help alleviate the trigger finger and strengthen those smaller muscles in my hand – this made sense with the spasm and with the previous tension I’d been starting to feel in my hands. I began to recommit to a new month long yoga journey, one that would start out slower and build up to focus more on the strengthening aspect rather than “I want to workout to sweat” aspect.
I got three days into the practice before noticing my shoulder was in a bit of pain. The first few yoga videos had been wrist heavy so I shifted gears on my fourth day to do more floor based work that would keep me off my hands and maybe shift onto my legs. The fifth day I returned to the yoga challenge and could tell I was really struggling even though this video was also less intense on my arms and shoulders.
It was once again the weekend, my day wasn’t too intense. I had watered my plants and essentially sat outside beginning to scroll through some Wayfair sales and after twenty minutes my arm was just done.
I started to do some of the trigger finger stretches and other arthritis focused hand stretches and everything seemed so tight. I glanced down at my hand and the muscles in my palm were visibly twitching.
How could such minimal use of my hands cause such an intense muscular reaction? Why was I suddenly having so much fatigue.
The nursing hotline advised me to go to urgent care – just in case my symptoms aligned with a slipped disc.
Failure To Treat Part One
Upon presenting to Urgent Care, I presented the previous muscle spasms and my health history including my migraines and the presence of the arthritis in all the effected joints that I was complaining about.
The doctor began doing a physical examination, she pushed along my spine, likely checking for slipped disc signs, and began advising me perhaps moving towards a diagnosis. She mentioned that although increasing movement probably was a smart choice it wasn’t necessarily the right choice and told me to stop doing my yoga.
At this point, I interjected realizing I’d forgotten a critical detail: just two weeks prior, I’d been bitten by a tick.
The tick bite was still visible on my leg, and although it’d only been attached a few hours it was relevant to all of the symptoms I was experiencing: muscle pain and spasms, joint pain and swelling, headaches, and so on.
The doctor’s entire course of action changed as if the tick was a lightbulb moment that explained everything that was happening.
She didn’t believe this entirely new set of muscle spasms made sense in isolation, but if I was infected with Lyme disease we had our explanation.
She didn’t give additional advisement when it came to exercise, she prescribed the course of antibiotics, and said to take Advil for a few days to help manage the pain in my muscles and shoulder. She then said to follow up with my doctor in two weeks to get Lyme testing done and address any lingering symptoms.
Surely part of this falls on me for not connecting immediately with my doctor, but I also just didn’t know what to do.
By the end of the week I felt awful. The antibiotics were kicking my ass but none of my symptoms were improving. I decided to follow up with my doctor early and he thankfully got me in before yet another weekend would be upon us.
He did the Lyme blood test and ordered a few other tests to check for inflammation. He also put me on a steroid taper for 6 days and wanted to investigate the route of any nerve damage that could be contributing.
We did x-rays of my neck on an area that has often been tender, they confirmed that yes there is still in fact arthritis there.
My bloodwork all came back great. My first Lyme test yielded a negative result.
The steroid taper helped reduce some of the initial fatigue I’d been experiencing and the muscle and tendon pain were also showing signs of waning.
This was enough for my doctor to decide we shouldn’t have any follow up.
I finished the steroid taper and was left halfway through the month of June with an arm that didn’t work, loads of pain, and no real direction to take – with the exception of a second Lyme test come July.
By now, my arm felt useless and so did I.
I was frustrated that I had full range of motion with the arm, there were no direct pains when moving the arm but any time I’d try to grip something it felt as if all of the muscles within my arm would spasm and the veins would get large as if the whole thing may just burst.
Now, as y’all may recall I’ve gotten absolutely no where when it comes to learning about arthritis. My pain doctor has no answers for me and truly just prescribed the LDN. The physical therapist that I saw didn’t have much to offer other than a list of exercises and stressing the importance of keeping my body moving as a way to manage long-term disease progression. Seeing a Rheumatologist felt silly, the drug options were too extreme and if I didn’t want to take them wasting my time with a doctor wasn’t worth while.
But as the pain in my arm continued to worsen and as that began impacting the rest of my body – no movement and suddenly my SI joints are in hell – I began to consider if maybe my best option was to revisit a Rheumatologist.
If this wasn’t Lyme disease to begin with, maybe it really was just arthritis.
Psoriatic Arthritis can absolutely impact your muscles and tendons and cause pain.
Failure to Treat Part Two
Briefly before getting connected to a Rheumatologist to go over all that wasn’t working with my arm, I connected with my headache specialist. He gave me critical information for my own personal treatment plan.
Since migraine has been the most prominent disease, it’s been the main area of treatment and most medications work around it. Meaning that the use of NSAIDs has been off the table as it could complicate the migraine management and long term use could have rebound implications. Under direction of my headache specialist, we decided that the need for short term use of NSAIDs would be okay and wouldn’t pose a risk. Specifically using them for upwards of two weeks every couple of months to manage say an arthritis flare.
This immediately opened up a bunch of options for arthritis care that had previously been off the table.
I lucked into an appointment with a Rheumatologist at the same clinic where I’d been diagnosed that same week.
It wasn’t incredibly ideal, the doctor I had requested to see was actually leaving. This was now the fourth doctor to be leaving. I was put on for an appointment with someone who wasn’t even registered in the hospitals system and figured at the very least I would be seen and while I was there we could discuss what options they had for continued care.
The day of my appointment I got ready in angst. I was in severe pain. I’d started a new migraine medicine and was trialing a new abortive which wasn’t giving me much relief. I slightly resembled something out of the walking dead and I stood in front of the mirror trying to decide if putting on makeup would increase or decrease my credibility. I kind of laughed remembering all of the notations in my chart discussing if I was “well groomed” or not. Well groomed is medical code for probably not drug seeking and in good mental health.
My nurse was nice. She was actually full of useful information. Apparently the entire hospital system had been relying on what’s called “locum” doctors to fill the Rheumatology department because in their eyes that was better than having no Rheumatologist at all. This is incredibly disruptive to patients who need a level of continuity with their care and I explained that to her. The doctor who had diagnosed me was wonderful, but I was left all alone once she left with none of the new locum doctors having any desire to take on my case. But the nurse was nice, she took down all of my concerns and helped explain what questions to ask at the front desk to get better set up with more consistent care.
It’s important to note that we not only covered everything going on with my arm, but also an additional area of inflammation: along my breastbone. This has been something I’ve noticed since last year but never pinpointed it as arthritis that I wanted to discuss. It’s something called costochondritis which just denotes the location of the inflammation but it feels like chest pain, and with my blood pressure finally under control and the palpitations having stopped the pain remained, so I wanted to ask if this was a thing.
The doctor came in.
She asked a few questions, we briefly touched on migraine and she asked what my days were like. I only got through a brief description where I mentioned I was really only functional for about two hours a day, some days, and she began to shut down that conversation. She wasn’t interested in hearing about being disabled by migraine. Okay, we’re here for arthritis. I’m not interested in talking about migraine. Red flag number 1.
She had me stand up to inspect my joints. She glanced at my hands, pressed on my shoulder. Briefly looked at my knee and ankles. I was promptly sat back down.
My inflammation was very low, but she did not continue the exam to include any of the pain in any of the joints. She asked about my psoriasis to which I allowed her to look at the patches in my ears. She didn’t. Red flag number 2.
I could feel the same level of disinterest and frankly the level of disbelief of the diagnosis just from sitting next to her and the way she casually moved through the required exams that the previous Rheumatologist had also had. She had decided long before she’d ever walked into that exam room that I wasn’t her patient. I was three doctor’s ago patient and this was a waste of her precious time.
She finally spoke and expressed that she didn’t want to put me on any medicine.
I chose to take this as a “I don’t want to put you on an extreme disease modifying drug” and began asking questions accordingly. I was thankful to not be taking an immediate route to another immunosuppressive and I expressed how awful those had made me feel from the first time I tried it. I assumed she would have another suggestion, like perhaps we’d go in the direction of an anti-inflammatory medication for this flare.
Instead she continued down the route of “I’m not going to treat you AT ALL” and brought up for a second time just how pretty and young I was.
I started inquiring about my Low Dose Naltrexone, asking if my inflammation was lower was that a sign it was working? Or perhaps if the inflammation was down but the pain was there the dose may need to be adjusted, should I follow up with the pain specialist? To which she declared she doesn’t prescribe LDN.
She was shutting me down at every turn. It wouldn’t have mattered if I’d put on eyeliner. If I’d done my hair. If I’d looked like I’d just woken up. This woman would never treat me. And I could sense I was leaving with an arm that didn’t work with no direction whether I liked it or not. I began suppressing the combativeness that was beginning to bubble inside of me.
She asked what I thought about trying physical therapy… to which I responded she could submit a referral to the physical therapist I’d seen just a few months ago for arthritis. It wasn’t worth arguing with her. She hadn’t even bothered to read my chart to know that I had literally just been through all of that.
I finally broke down and straight up asked her if she even though this was arthritis. She didn’t hesitate when she said no.
She said she’d be referring me to Neurology to check on my nerves. By this point she was looking directly at the notes from my primary care doctor advising the same route. She was done with me.
But she still had her piece to say.
Because she did offer me prescription.
A prescription to go out and start living my life, because I was too young and too pretty.
And she didn’t stop there.
Then she decided to explain how pain receptors work to me. And how since I’ve decided to be disabled and to stop working I’ve encouraged my pain receptors to be more active. And if I just started working again I’d feel better.
This doctor didn’t even make it through my description of how my days go with migraine and what it is that I do. She didn’t know my personal history that I worked myself into the ground in the first place under this same exact “work more feel better” theory. All she knew was that I was too young and too pretty to be treated or believed.
I hid my tears from the receptionist. I begged to be seen by a different Rheumatologist but the receptionist insisted I see how these other test results come back, which would likely take weeks.
I finally broke down in the stairwell and just cried.
My arm could move, there wasn’t any visible swelling only my word that it hurts and it feels strained. No one would help me. It would have been fine if she’d just said she couldn’t help me, but to gaslight me with anecdotes about pain symptoms and my age and my appearance left me with no fight in me. I couldn’t force myself to try and connect with my pain doctor. I couldn’t force myself to get in to see my primary care doctor to ask “now what?”
So I just went home.
It’s been almost another two weeks.
My primary care doctor was able to get me on another steroid taper, this time slightly longer. I understand this approach, it’s commonly used for arthritis flares. But Saturday I took the last pill and my arm is still in absolute agony.
My second Lyme test was negative.
I sat with my feet dangling in the pool, holding up a magazine as I read it. I couldn’t sit for very long because the weight of the magazine made my upper right arm feel as if it too would begin spasming if I continued to hold it. My mom had to water my plants, as I can’t really support the watering can’s weight for my hanging ferns.
I’ve spent most of the day massaging my neck and my arm and my shoulder. I’ve gone through a variety of creams, none really providing much relief.
The tension just keeps building back up.
It’s been 45 days since my back spasmed.
I guess I’m thankful to be going back to physical therapy this week to see Tom my PT. Over the last few days I’ve been heavily notating exactly how the arm feels. I’ve looked up a few stretches intended for my rotator cuff, and there’s some that I can’t do.
At this point, I don’t know what to do.
There’s a fine line between being aware of the more devastating side effects of medications when used in young adults and using age as a firm reason to deny treatment.
But at least I’ll be pretty.
The pain is now shooting through my hand. Sharp and electric like the first time I ever encountered it.
But I’m pretty. Like the doctor said this isn’t arthritis. At least, it’s not arthritis that’s being treated.
Update 7/17/21 – After some suggestions from doctors, friends and strangers alike to continue pursuing a Lyme diagnosis/treatment I was seen at a tick clinic late this week and have begun antibiotics for Lyme or another tick borne illness and am awaiting both local testing for Lyme and co-infections and IgeneX testing which won’t have results for a month.