Here’s the thing:
I feel like my lifetime of depression and anxiety are being used against me, in an environment that is hugely triggering of anxiety, and the result is that I feel terrified. Terrified to advocate for myself. Terrified to be told it’s all in my head, all because of age, all because I should never have taken prednisone in the first place. Terrified because your esteemed colleagues have gone out of their way to undermine my well-being, making up diagnostic criteria on the fly (like that weakness only counts if a person actually can’t get up from a chair), and making sure that I understand I’m not worth the effort, denying even a 20 year diagnosis of fibromyalgia. Terrified to be misinterpreted, dismissed, mocked.
To say that my experience of both persistent and recurring pain and dysfunction throughout my body these last 4 years is due, in any significant manner, to my mental and emotional state is to disregard current documentation ie plain film images of cervical-lumbar spine; current observations ie bilateral tmj crepitus/pain etc, bilateral knee crepitus/pain, neck crepitus/pain, fingers swollen/painful nodules/recurrent beau’s lines on hands and feet (there are some on my toes right now, by the way) and the fact that it all came crashing down starting in early 2018 IE within 3 MONTHS AFTER STOPPING DMARDS and PREDNISONE LEVELS UNDER 10MG.
And it is to disregard historical evidence: ie anti-rnp, wrist imaging because of theoretical subluxation causing flex/extension/load-bearing and stretch pain (continuously recurring since then); ankle imaging due to recurrent sharp pain, like bone on bone, and sense of instability (never stopped happening); thoracic spine plain film because of months of upper back/neck pain and dysfunction that has continued to recur/persist; jaw plain film images because of increased idiopathic tmj issues (that kept happening); tmj mri showing “internal derangement” when my jaw was locked on the left for the first time after it always being on the right; AND all the while living an active, healthy, productive life, with depression/anxiety co-existing alongside varying levels of chronic and recurring pain/functional limitations UNTIL late 2015, when I started feeling (increasingly, persistently) unwell, but kept pushing myself because: NO work NO PAY.
It is to ignore the fact that I DID experience periods of improvement during 2016-2017, just that they were not particularly stable. It is to ignore that my experience is not uncommon, that there are confounders to treatment for inflammatory arthritic conditions, such as FM, hypermobility, gluten sensitivity/celiac disease, myopathy, borrelia, nerve pain/damage…
It does nothing good for my mental health or anxiety to have these facts tossed by the wayside, the validity of their role in explaining some of my experiences of my body unacknowledged. It feels like I’m being subjected to non-standard or arbitrary criteria, for instance, your expectation that I’ll experience improvement after 3 months (how is this reasonable, since my sleep is still severely disturbed, and IF I ALSO have FM or other factors contributing to my pain and dysfunction? ) or to disregard an historical positive anti-rnp result, or fail to acknowledge the huge gaping holes in the current understanding the role of ANA (ie Pisetzky at the 2019 winter rheum confab). You ask me what I think is going on, and it feels like you’re baiting me, setting me up so you can knock me down, just like your colleagues have done, to deny anything is now or ever has been wrong. I’ve been so undone by their hypocritical and harmful words and actions.
I wish I could simply trust your intentions. I’m trying.
It is not helpful to my mental state not to name the things that are present now, ie osteoarthritic changes to multiple joints, Achilles tendonopathy, worst I’ve ever experienced, symptoms beginning in late 2017 and that developed while wearing (new in 2016) custom orthotics designed to address pronation among other things, suggesting some other biomechanical changes have triggered the current problems - I walk with all the grace of Frankenstein’s monster these past years, because of stiffness/pain/fatigue/weakness; plantar fascia –itis or –opathy, which I’ve never experienced before 2016; and then there is the intense pain under my heels from the first step of the day, along with evidence of pedal papules (going back about a decade for those). For the record, I first used custom orthotics around 2004 as per Dr. Stanley Sweet,(Toronto) because of Achilles pain, thickening from over-pronation, but no plantar pain, which now makes ever step brutally painful
Equally problematic is the apparent refusal to consider 1) the physical abilities required by my former employment, including formal recertification, every 2 years, of physical ability to do the work, which I successfully achieved in 2015; and 2) the fact that I was unable to do any of it by the summer of 2016 because of a combination of pain and functional limitations including physical fatigue, impaired range of motion and loss of strength. When I decided to pursue the aquatics courses in January 2013 that led to me working as a lifeguard and swim instructor that same summer, I outperformed teenagers for strength, speed and endurance. I just got in the pool one night and started swimming.
I understand about not wanting to deal with the messiness of mental health issues during clinic visits. So I’m hoping all of this helps you understand some of the factors contributing to that messy mental state. Osteoarthritis and disc degeneration – that were already present in my early 30s! - may not fall under your remit, for instance, but ignoring it as though it doesn’t exist or have the potential to contribute to the pain and dysfunction I’m experiencing now is wrong, and harmful. It’s what your colleague have done to me. It feels like gaslighting. If you are concerned about my mental state, please understand saying something like “giving you the benefit of the doubt” is hugely anxiety inducing, as though none of the above exists.
I get that it’s a lot to sort out, too much to focus on, overwhelming. I can’t help but constantly be wondering about my reality, and wondering if it being a psychotic break would be preferable to my current quality of life. But then I remember tmj mri reports about internal derangement, and spinal plain films showing disc degeneration and nerve space narrowing and arthroses, and rnp antibodies.
Here’s what I didn’t mention or clarify on January 30, 2020. Many are either new since early 2018; those that predate are now more pronounced. I knew I was on borrowed time, and I was too afraid to push. I don’t think it matters now:
- About the sense of bruise like pain: there may not be bruises present, but there are often (newly in the past few years) prominent surface veins of varying width that seem to correspond to where I feel discomfort, and are tender to touch, from head to feet and everywhere in between. Or it is a deep pain, such as in behind my knees, extending up into the hamstring region and down to the top of the calf most noticeable when I lie down.
- The skin on the sides and palmar surface of my hands is now creased/roughened/calloused , red, with varying degrees and types of discomfort; the same is true of my feet, particularly the arches/medial heel. The bulk of this occurred in 2018. The exceptions: 5th finger, palmer and lateral roughness/creasing, extending down hand, 2nd finger lateral and palmer roughness/creasing, both pre 2016. The skin stings/burns (like having been slapped hard), or a feeling that it’s being torn. Sometimes lidocaine helps. My nails hurt, like a narrow blunt object is being pressed down on them near cuticle. All my fingers and toes now have longitudinal ridges, but prior to 2018 a few single ridges on 3 fingers and 2 toes.
- My hands and feet, in addition to fingers/toes and wrists/ankles, are sore and puffy, some days are worse than others right from the beginning. It’s in how my wrist splints fit, or how tight my boots feel. My hands and feet get cold out of nowhere and stay cold for hours, in spite of heated blankets. I first experienced this when I was 18 (and intermittently since then), family doctor concerned enough she referred me to a neuro, who was utterly dismissive.
- The extent of the redness (that I itches if I don’t take antihistamine) and that I’m still not sure if it’s considered a “rash”, and most of which emerged or reemerged (improved during 16/17) starting in early 2018: across collarbones/sternum/shoulders/arms /breasts small patches of veiny redness at joints that also hurt (knees, elbows, ankles); across knuckles; forearms when they’re really achy; band of discoloration across my nose and cheeks (also was very prominent when I first fell ill, but I doubt that made it into any medical records at the time), sometimes chin, forehead, under/around my eyes. I’ve been very careful about sun exposure, which definitely makes it more pronounced, as do both cold and heat. I see pictures in medical journal articles or similar that show what I see on my own body, images that correspond to known conditions. It feels like I’m being evaluated against arbitrarily tight criteria.
- The current puffy discoloration around my eyes re-emerged in mid 2018 (was also present when I first started feeling unwell, but improved), the puffiness then got worse around the same time I gained 20lbs over 2 months (late 2018/early 2019). It is worse on my left side. It is not due to the ongoing disturbed sleep for over 4 years.
- Sleep is disturbed – no more than 2 hours continuously - by a combination of 1)pain/discomfort requiring a change in position – eventually my right hip/pelvis/low back is uncomfortable in every position, usually after about 5 hours; 2)temperature dysregulation: elevated temps/low fever/sweats/chills/hot flashes; 3)frequent need to urinate (fewer than 3 times/night is unusual) that is not due to nighttime fluid consumption (which I’ve drastically curtailed in spite of thirst).
- Lying down in bed is actually physically painful, with multiple locations feeling pressure and discomfort: back of heels, back of knees, pelvis, elbows, that recur during the night.
- Regular daily pain along the margin of my ribs from sternum around to the flank, tender to touch, sense of muscles twitching, fullness/pressure sometimes behind false/floating ribs on either side.
- Regular, near daily pain up the side of my head into the temple, mostly left side, occasionally right, sometimes seems to start at the base of my neck near clavicle or just below my ear. My skating helmet (new in 2016) now presses uncomfortably against this area (didn’t used to). Note: “women over 50” is code for menopause, but because of the inherent misogyny of the medical industry, female hormones have been studied only in their relation to reproduction.
- Regular daily pain in and around the eyes, muscle twitches, my eyes now have a tendency to stray laterally (according to optometrist), dryness, left worse than right for all of this, and a whole bunch of visual disturbances that interfere with reading, walking, driving, or simply having my eyes open.
- Regular daily changes in hearing and tinnitus, pain in/around ear drum (with muscle spasms of same), and daily experiences of painful noise. My ears are almost always uncomfortably cold. Oh, and recurrent sores, 2 spots on left ear, one on right.
- Neurological symptoms: muscle twitches causing and entire leg (affecting both sides not at same time), or my torso to spasm involuntarily; tingling that affects only one side of my body, usually left (head/face/shoulder arm, or pelvis/leg), tingling etc in feet (bilateral), and the entirety of symptoms of trigeminal neuralgia, (raised as a possibility by my Toronto doctor, when discussing migraine symptoms, but since maxalt seemed to help nothing further was done). I know this isn’t any of your professional concern, but not making you aware of possible confounders to treatment, or even diagnosis, does me no favours.
- Beighton scale of 5-7 depending on the day (thumb to forearm is the ONLY item that has never applied to me), positive wrist sign, symptoms of bladder prolapse, spontaneous bilateral knee hyperextension while walking/stairs (a regular occurrence in my youth ~age 7), elbows painful resistance to full extension particularly under load as though the joint isn’t tracking properly, right hip painful resistance or “cracking” to abduction/flexion/weight shifting/rolling over in bed, feeling that it isn’t sitting properly; neck flexion that triggers sense of impending blackout (not breath holding) and wishing I could take my head off and put it back on again, shoulders (the right one too, that’s never suffered injury) that crunch and clunk painfully, including rolling over in bed or reaching for objects, 4th and 5th fingers (PIP and DIP) that painfully crack laterally from holding/manipulating objects like frying pan, carrying gallon jug of water. And a history of feeling joint instability accompanied by doctors telling me I’m wrong, complicated in part because of the failure to diagnose Hypermobility Syndrome when I was a child, a diagnosis that would ease the way for doctors to accept my experiences of joint instability as an adult. I don’t know if other EDS criteria apply to me, like mild skin hyperextensibility or “doughiness” , I just know it was inappropriately dismissed from consideration based on one element of one element of the diagnostic criteria.
And before I take the drug, there are other things that didn’t come up, that relate to warnings about Xeljanz. I suppose I should get them checked out before starting the medication – just can’t shake the feeling that I’ll be pawed at and then mocked/dismissed/ignored as happened last time I tried to get something checked out by a GP at a walk in.
- Unexplained raised spots on my abdomen that are tender, palpable, occasionally itchy and become more noticeable (along with generalized tingling/itch across abdomen), first noticed early 2017, more problematic since 2018. I don’t consider it a rash, considered mentioning it but it would have required more time, more examination, and I already knew I had been too long. Oh, and ongoing and new GI issues.
- I regularly experience arrhythmia, have done so for well over 2 years. Well, 2 different kinds. The first, more common (near daily) feels like “BEAT beat pause” at a normal rate, and seems to correspond to exertion, and also to lying down. It isn’t uncomfortable, just odd feeling, especially when lying down. The second (less than weekly) feels like an absent beat in an otherwise sluggish/heavy rate, that is accompanied by an unpleasant and uncomfortable hollowing/caving in sensation in my chest, breathing feels like a lot of work and general off feeling. Oh, and tachycardia in the absence of exertion.
- Pretty much every day, more than once, there are periods when breathing just feels like a lot of effort, unrelated to exertion, and corresponding feeling of being short of breath/not getting enough air. I know I’m not “holding” my breath – when it happens the first thing I’m aware of is taking a big breath in.
- Symptoms of recurring kidney stones, intense thirst in spite of regular fluid consumption throughout the day; and in the past 6 weeks routinely darker/more concentrated urine even with water/noncaffinated tea intake of at least 2 liters consumed throughout the day; fluid retention, reduction in daytime urine output with as much volume from 8pm-8am as the opposite, especially if I give in to my thirst/drink more than 2.5l/day; foamy urine multiple times/day, a handful of times really dark (ie strong tea) with increased muscle aches; and there’s that ~20lb weight gain over ~2 months a year ago, that hasn’t budged, around the same time the foamy urine started (late 2018/early 2019).
And this is the role of the GP, to help investigate these other matters – I get that. I tried that. Only to have my words and history misinterpreted, taken out of context, used against me, never told that plain film xrays document physical changes throughout my SYMPTOMATIC spine but instead told I’m a hypochondriac, told enough has been done, along with the outright denial of prior diagnoses.
If you get to this point, and wish you’d just said no to seeing me again, well, I can’t say I blame you. There’s rather a bit too much going on. I’d rather not be dealing with myself either.
You obviously have a very busy practice and I’m not going to get in the way of you trying to help others.
So if you want out, you got it. You just need to put it in writing, that you’ve changed your mind and are deciding not to see me because it’s too much to deal with, too messy, that someone else will be better served by that clinic time.
What you cannot say is that it is because there isn’t evidence , or that there isn’t anything wrong with me, or even that I don’t fall under your remit.
Put it in writing and send it to me before my next appointment, because getting to Penticton is difficult for me, exhausting and physically fatiguing to come by bus because I’m not able to make the drive myself. There’s no point me making the trip if you’re going to remain inappropriately focused on my mental and emotional state as the primary cause of my physical pain and dysfunction.
If you don’t want out, well I need to know that you’ve read and understand these words, that you acknowledge there are confounding factors and accept me for who I am. Maybe you can put that in writing too.
