What Autoimmune Disease team is taking me as a draft pick? This is the new question. Will I get lucky and get picked up by rheumatoid arthritis? Or is lupus going to show up last minute and brag about taking me down with genetics. Will psoriatic arthritis decide they want a chance at the super bowel? OR will we get the free agent pass of “just an insane autoimmune reaction to an infection“?
Strap in with me as I tell my tale of woe and give you the play by play of what happens when EVERY joint on your body flares up AT THE SAME TIME.
Dial back a month and some change ago when I completed a very strenuous, but in line with my (former) skill level- kettle bell routine. Exercise was the new normal as I was on a mission to lean up for tattoos, summer and a wedding. I just wanted my arms, shoulders, thighs and ass to look less puffy, middle age lady to more fierce, sinewy middle age lady. That’s ALL.
Really, that was all. Also really: I am never touching a kettle bell again.
Workout was great, dinner was healthy, things seemed normal that night. Over the next couple days I very slowly started to develop DOMS (Delayed Onset Muscle Soreness). By day three I was REALLY feeling it, especially in my hands and knees. The day after that it had spread to my neck, throat and shoulders/arms. Immediately after that it was getting harder to move in the morning. Almost a week later my hands were starting to really, really hurt in a new, unfamiliar way and some of the fingers were starting to swell. Something was obviously not right.
Since I work around physicians, I was asking all of them (even though they are psychiatrists) what they thought about this increasing pain. A couple of them wondered if I had pulled a few tendons. It did feel very much the same as when I pulled a tendon around the knee during a deadlift at the gym years ago, so I went with that and started alternating icing/heat with the usual ibuprofen and chuckling at the idea that of course I would pull several tendons with a kettle bell. Very on brand with my personality.
The following Sunday, exactly a week from the kettle bell workout, I woke up in excruciating pain. All my joints felt exactly like they were on fire, and I was having trouble using my hands for basic functions. You know, stuff like brushing your teeth, putting lotion on my face, pushing and pulling. (Slicing vegetables and using a butter knife were RIGHT out). It was almost impossible to do any task without this dull, throbbing pain and inability to just MOVE my fingers. It would get even worse at night, making sleeping a joke because the joints would stiffen from disuse. Waking up was its own fresh hell, as I had to start reversing the symptoms into something manageable. In my head I was wondering if this was still in line with tendons/joints so I started doing light arthritis exercises.
It was when I woke up Monday morning and couldn’t turn the shower on because I couldn’t move my fingers AT ALL, that I started to think this might not be a normal reaction to pulling tendons in your hands. Yes, the reality was taking THIS long to settle in, but some of you have not lived through endometriosis fire cervix cramps and come out on the other side. My pain tolerance is insanely skewed.
Guys, you have to understand; When I push back the (literal) red mists of time to my first abdominal surgery to remove endometriosis covered organs, I can see where my mid pain tolerance leveled up to final boss level. You get SO used to contstant,intense pain that you find ways to keep pushing forward, or else you just can’t live your life. Anyone with chronic pain who refuses to let it control their life knows EXACTLY what I’m talking about. You hurt if you do, you hurt if you don’t, so might as well keep on keeping on. In my head the disease is a fucker that WILL bend to dominance, and WILL fall in line.
Ok so treating my own chronic pain like it’s a bro-class, bootlicker with a raised truck, thin blue line bumper sticker and obedience fetish might be a little weird but it’s how I cope, thank you.
I was not in the dominance phase yet mentally, however, I was just plain scared. I called out for work that day and sat with my coffee (which took 10 minutes to put in my cup because I couldn’t hold a mug or coffee pot in a functional manner) and just cried in my chair with a heating pad draped over my swollen, useless hands. Again, something was extremely wrong.
But what in the hell was happening? All the symptoms I was googling really pushed towards rheumatoid arthritis. Thing is, I had never once had hints of that level of arthritis in any joint on my body. The autoimmune idea started to trickle into my pain hazed brain, and I was starting to see the potential of this being an extreme reaction to something. My skin flare up post surgery last summer, my now controlled eczema/ psoriasis patches, the fact that I felt vaguely sick most of January and February, the family history of SLE (Lupus), rheumatoid arthritis, psoriasis- all that shit was underneath the autoimmune umbrella. Any sort of extreme reactions like this can mimic all that with a family history of autoimmune disorders, and sometimes awaken the disease permanently.
I still remember, vividly, when my sister had her first, inaugural lupus flare up. It was terrifying to watch and just so incredibly sad, because of how young she was at the time. 20 years old and could barely move, all her limbs swollen and stiff. She was trying to drive me to work one day and I remember her pushing herself hard to walk out to the car, moving so incredibly slow. I had glanced out the kitchen window to see her trying to open the car door (unsuccessfully) and then just bursting into tears because her hands just couldn’t move the door handle. It took months (years?)and drugs for her to figure out her own journey and in the end, as is typical with autoimmune diseases, it was the specialists agreeing that “we think it’s lupus” and to treat it as such.
That visual still chokes me up to this day, and the reality that I was moving as bad as she was back then was skyrocketing my anxiety over the situation.
Everyday after the following Monday was incrementally worse. I was having trouble moving my legs to the extreme, so I called out from work again, tucked in and watched 35 episodes of Attack On Titan under blankets and heating pad, taking heavy doses of ibuprofen. A couple days later I drove my brother to his jobsite, struggling badly with the manual transmission and clutch, icing my hands and knees at stoplights and finally decided to present myself to the emergency department.
Unfortunately, this would end up being extremely unhelpful. I won’t even get into the weeds of things, but the physician that saw me didn’t want to listen. She was mad that my blood pressure was elevated (because of anxiety and pain), told me it was uncontrolled and then just dropped immediately that I probably had Rheumatoid Arthritis, in the most nonchalant, conversational manner. I did get x-rays, a referral to a specialist and bloodwork, but was sent home before the bloodwork results (that would end up with a crit and no follow up). I also got a script for Naproxen after I stated that Aleve (which is Naproxen) wasn’t working. Quality care, right there. I came home, complained massively about her online, and by some miracle got into see my family doctor the following week.
The next day was even worse. I was now 45 episodes into Attack on Titan and having fragmented bizarre anime dreams about non-working limbs and people-eating giants.
The day after I saw some sort of ease in pain symptoms, so I ran some light errands. Big mistake. Huge. Saturday morning, almost two weeks after that kettle bell workout was the single worst morning so far. I could not pull up or pull down my pants or move from a sitting or standing position for an hour after waking up. Couldn’t lift my legs with my knees. I could not lift my arms over my head. My feet were now swollen and hot. I had a rash on my arms and torso. My hands were extremely swollen*(see pics below) and the joints on my fingers looked like little balloons. Again, I sat in a chair and cried, hoping that I could just sit through some of the pain until I could push myself to move around a bit. Sunday was just Saturday part two, the sequel. (I had to ease up on Anime and started watching Andor).
By some driving divine force, or by insane sheer will (stubborn denial?) I forced myself to work Monday-Wednesday. We are coming on two weeks of symptoms. I was not trying to be a hero, in fact I looked extremely pathetic and it was probably hard to even look in my direction. I was walking like I was 95 years old with no walker. Just small shuffling steps because I couldn’t fully bend my knees. I had to drive my car with my palms because I couldn’t bend my fingers over the steering wheel. Everyone would just wince when they saw me make any attempt at physical activity. It was, quite frankly, fucking ridiculous.
Finally, I saw my doctor along with my mother who had to:
1. Help me get to the appointment and assist me with walking.
2. Give a solid background of our family history.
3. Remind me that I need to actually speak up when it hurts and not just sit there and take it like a masochist.
Between her, myself, and my pretty stellar family doctor- we deduced that I was either having my first SLE/RA flare up, or I might have a raging infection, probably untreated streptococcal, that I never fully recovered from. My stupid kettle bell workout for whatever reason awakened the sleeping beast and the infection exploded, attacking all my JOINTS in some sort of super, special edition, value-pack autoimmune flare up.
The ENTIRE time, starting immediately on day one of symptoms- my throat hurt. Somedays worse than others, but my throat was constantly in an alternating flux of scratchy, tight pain. That symptom stood out to me as something that might be the key. My family doctor immediately sussed that out.
Did the ED doctor catch that? God no, she spoke over me pretty much the entire visit and I did not get a chance to discuss the sore throat and rash that was (visible) on my arms. She immediately assumed I was not as hurt I was saying, and wanted to lecture about blood pressure. For the record I have wicked white coat syndrome. I’ve tested it many times, and my BP predictably goes up with doctor visits. I’ll be 120/80 at home, and then 130/95+ in any sort of doctor/hospital situation. It creeps up more with severe pain, and even more when doctors are treating me like I’m completely stupid. It’s annoying, but it’s definitely something I bring up immediately in a medical situation.
After my GP visit I took a course of fairly high milligram prednisone that eased up the symptoms almost completely, but to my absolute horror…they started to creep back after about 6 days. The same thing was happening in slower motion this round, hands and knees were both aching and complaining, loudly, at each movement or rest. Completely terrified that I would get as sick as I did previously, I went back to my doctor and at press time-I am currently in the middle of a 15 day taper off of prednisone. I’ve seen a specialist since and I am beginning the usual series of tests/bloodwork they start to run you through if you are sporting autoimmune symptoms.
I’ll find out after June 10th if I need more tests, need more drugs, or need a huge high five for averting disaster.
I’ve been at a loss for over a month with words. This experience has been nothing short of awful. I went from quite literally zero to one hundred with severe arthritis symptoms over the span of a week. One Saturday I decided to work out, a full week later I was huddled under a heating pad, cradling cups of tea for warmth and wondering why the hell it was so hard to lift cartons of creamer, open doors, or drive a car. The speed that this situation befell me was just breathtaking. I’ve upset everyone, freaked myself out, and have quite the new perspective with life and living.
Prednisone is the best drug and the worst drug. I’ll get these bouts of ‘roid energy where I am almost hypo-manic with cleaning, rearranging furniture but then I’ll remember that this is chemicals, not reality, and I try to slow down when my knees start to ache. But man, you should see how nice my living room looks now and I can’t wait to start planting all my balcony plants. Maybe do some painting? Absolutely going for a walk. I was specifically told to not lift weights by the specialist which is boring, but probably a smart decision.
Remember last year how I said when I recovered from my surgery it was all over for you guys? Turns out I was SO WRONG. Hilariously off the mark. It’s ok though, current goals right now are pretty small. Not getting sick again and being able to open doors properly are priority, and I feel like those are useful in every day life. My hands still randomly feel like they are thawing out from being in a carbonite chamber, so much that I actually switched Star Wars sides with my new car and am now sporting an alliance decal. Truly, I gave up my eight year empire allegiance after the second season of Andor was good enough to show me that “rebellions are built on hope”.
Hope is all I have here. The Autoimmune, it changes a person. Whether its chronic or a freakshow infection reaction, it’s enough to help you re-examine your loyalties and use of energy when your own body decides it’s time to kick it’s own ass. It’s time to rebel against my own bodies rebellion.
I need more rebel alliance in my life anyway. Tune in next time when we find out what autoimmune football team I’m getting signed on!
Also I have a free 15 pound kettle bell available. Inquire within.
*See below for hand comparisons:
The Devious Scribe 