Diagnosis Roulette: Overviews and Epiphanies

2016 has gotten off to a rather rocky start for the denizens of the Mountain Fortress. Jabba, my thirteen year old cat, is quite sick (hyperthyroidism and other issues and difficulty medicating him), and there will be a post on that; but it turns out I’m not in great shape either.

Except I am. And here’s where it gets confusing.

My mental image of myself is of someone who is very active. I run 2-3 times a week, various distances (my current best distance is 7.5km without stopping). I lift weights 2-3 times a week, and while my mediocre bench press weight will not be striking competitive terror into the heart of the average powerlifter, my maximum weight is – very slowly – increasing. SCUBA diving is something I do on a professional level, and I’m fit and strong enough that I can do multiple Melbourne shore dives in a day, with long walks, in full dive kit, not only well, but comfortably. I do get fatigue, but it doesn’t really hit me until I get home (adrenaline, perhaps? Diving is fun and exciting). Until that point, I have enough fuel in my metaphorical tank (not to be confused with air in my literal tank) to help anyone who needs it.

Even when I injure myself – which, being hypermobile , I tend to do far more often than most people – and am forced to halt my usual exercise regime, I tend to compensate by going on long walks in the forest (presuming I am capable and it’s not an ankle injury). Lately, these have been clearing 10km distances and steep hills. I’m fortunate to live in a place full of lyrebirds and wallabies, so these walks are both restful and fascinating.

I even did the Tongariro crossing in New Zealand last week with a good friend of mine – 20+kms and some very steep parts.

So. All this is true. I’m well enough, for the most part, to do all these things. I am even at the point where – I flatter myself – I look “fit” (insofar as society has a somewhat flawed image of what a fit person looks like), kind of. I am far more svelte than I once was, and you can even see my arm and shoulder muscles without me bothering to flex.

I think of myself as fit, active and relatively strong. I see physical challenges as things to be met, for fun, and many of them are things I need to work up to slowly, but where once upon a time I would have dragged my aching body away and said “That is pain I do not need,” now I think, “Well, I can’t do that… yet… but let’s see how we go.”

But I also suffer from chronic illness. Multiple chronic illnesses.

I don’t think of myself as someone with chronic illness. I have quite a few friends with various chronic conditions, and I compare myself to them, and tell myself that I’m just whinging. Having a sook. Things could be way worse.

They are… starting to pile up, though.

They’re each a bit complicated, and they tend to interact, and today we’re just dealing with physical illnesses. I’m just going to provide a brief overview of each, because I am, naturally, fascinated by my own medical condition, and it might explain things to people who wonder why I have apparently disappeared off the face of the earth, socially speaking.

Chronic Condition #1: Endometriosis

Diagnosed: 2012. And I didn’t really have the nasty burning stabbing pain before that – just painful periods.

Symptoms: menstrual pain, fatigue, nausea. Can also be symptoms associated with any affected organ – bowel, bladder, ovaries, etc., wherever lesions set up house.

Severity: mild. I tend to spend a couple of days couch-bound. The fatigue is really intense. I can work through it, but I get a bit of a grey haze. I don’t tend to get symptoms much between periods, as near as I can tell, but that’s hard to say because of the other issues.

Treated?: Yes, through laparoscopic surgery, but it seems to have come back (although it’s not certain, see “Note”). That happens in about 20% of cases as near as I’m aware.

Management: contraceptive pill and heavy-arse painkillers when needed.

Note: what I am experiencing now may be a recurrence of endometriosis, or it may not. It’s hard to tell whether it’s just that or more generic dysmenorrhea. The only way to know for sure would be to get another laparoscopy.

Chronic Condition #2: Joint Hypermobility Syndrome

…or Ehlers Danlos Syndrome (Hypermobility Type).

Diagnosed: informally, by various physiotherapists and one podiatrist, about 2009. All quite fascinated by the way my feet move. It’s fun to watch their jaws drop, but it’s also a bit of a bummer. No-one wants to surprise any sort of medical professional…

Symptoms: defective collagen leading to unstable joints. Excessive flexibility around joints associated with ligaments and tendons, not muscle flexibility. Poor motor habits, reduced proprioceptive feedback, chronic pain in joints, dislocations (I don’t get these, except for my kneecaps, and that hasn’t happened since I started management), subluxations (like super miniature dislocations), joint inflammation, etc. etc. Frequent soft tissue injuries – sprained ankles, shoulders, etc. Poor physical coordination. There’s a bunch of other stuff but it gets complex.

Severity: moderate. That’s not a formal assessment, as I’ve never taken myself to a rheumatologist for a connective tissue biopsy (which is a thing you can do). I’m basing this on the fact that many people have hypermobility without the pain and coordination and various other issues, which I’m calling mild, and others can end up constantly dislocating and being unable to walk significant distances due to pain and floppy joints, which I’m calling severe. I’m able to exercise and work out and walk long distances – I just have to do a buttload of prep work to get away with it, and if I don’t work out for a reasonable period, I start to hurt (ie, muscles go a bit lax, things start flopping around more when I move, equals inflammation).

Treated: …sort of. It’s genetic, so obviously there’s no cure, but there’s management.

Management: see above. A buttload of physiotherapy work (up to an hour daily if I do everything), clinical pilates (in theory, weekly, but I’ve been sick and haven’t gone for a while), strengthening work to build muscle (I lift weights. Not big weights. YET). Also orthotics, and a check up every six months with my podiatrist to make sure everything is going well with my feet (which tend to bear the brunt of everything when it all goes wrong). I cannot be inactive for too long, or it really goes pear-shaped. I also need to avoid large amounts of progesterone (ahahaha, more on that another time), because that exacerbates the effect. This is why I tend to drop things and walk into things even more when I have my period. I basically undertake all physical activities with my hypermobility in mind – the things that other people do instinctively (balance, activation of stabilising and supporting muscles), I have to do consciously, and it is genuinely exhausting, so there are some fatigue issues. My balancing reflexes are poor – they always kick in a little too late – hence the tendency towards sprained ankles and falling on my arse. I even choose my dive fins with an eye to reduced finning effort, because the more movement in my ankle, the more likely it will start clicking and getting inflamed.

In a three week period earlier this year, I had three connective tissue injuries. Shoulder. Hip. Lower back. I think the owner of my physiotherapy clinic can now buy an additional yacht. There’s a reason it takes me a long time to increase strength and fitness – I keep having to take breaks from workouts. And, funnily enough, most of my injuries happen outside of my workouts (I am super careful). Except the hip. That’s usually related to running.

Chronic Condition #3: WHAT IS THIS I DON’T EVEN

Diagnosed: hopefully, 2016? But when we thought it was something else, 1996.

Symptoms (previous diagnosis: hidradenitis suppurativa): recurrent abscess formation, mostly in embarrassing places. And I mean recurrent. Severe pain. Scarring from multiple surgeries (easily double digits). Fatigue (try having an infection site the size of a golf ball with poor blood supply, you’ll get pretty tired yourself). Not that it’s really worth mentioning, but embarrassment. I’ve lost count of the number of times I’ve had to haul arse to a new GP or to the Emergency Department and just drop my pants. Honestly, I’ve become very blasé about people looking at my backside.

Symptoms (possible new diagnosis: Crohn’s Disease ?): All of the above, plus the mysterious agonising “I am being stabbed, no, actually fucking stabbed” abdominal pain I get a few times a year, which would be partial intestinal obstruction (if this diagnosis is correct). Other digestive issues (IBS sort of symptoms. Also a correlation with FODMAP issues, which I also have). Fatigue. Joint pain and inflammation (uh oh!).

Severity: No idea. If it was the old thing – which it’s not – I’d be a mild case. If it’s the new thing, we don’t actually know until I get an examination. It’s one of those things where the external symptoms don’t match what’s going on internally.

Treated: Sort of? Multiple surgeries. Potential new diagnosis might lead to a buttload of medications, depending on what they find. More on this a bit below. But again, neither diagnosis is curable.

Management: A buttload of medications, see above.

Hence my confusion

So, the last surgical consult I had turned out to be a woman who had previously done a dermatological residency. She was adamant- in no uncertain terms- that I did not have hidradenitis suppurativa. Since it’s a fairly obscure condition, most doctors who have suggested it have looked puzzled and have been half-hearted about the diagnosis, so this is the first I have heard definitively, in either direction, in the twenty years since I first developed an abscess I wouldn’t tell my mother about until I couldn’t walk (ah, teenage self consciousness. Sending kids to hospital since, well, forever).

The leading diagnosis appears to be Crohn’s Disease. I do not want Crohn’s Disease. It ranges in presentation, but it can be incredibly nasty (although I venture to suggest that if I had the worse form of it, I’d know long before I hit my mid-thirties). It is difficult to treat. In many cases, you end up with surgery to remove bits of your bowel. Now, I’m not overly fond of my bowel – it’s caused me problems – but it’s a useful portion of my anatomy and I’d like it to stay right where it is.

But on the other hand… Crohn’s Disease, or at least a mild-to-moderate form of it, explains a lot of my symptoms, including the abdominal pain that has never been successfully diagnosed (leading theories have run the gamut from gall stones to kidney stones to appendicitis – the pain is that bad – but it’s all come to naught). My innards get inflamed and painful and it’s horrendous, and I’m just glad it doesn’t happen more than a few times a year, because the only thing I can do is take high dose prescription codeine and sleep it off. That also suggests it’s a mild-to-moderate form – because if I had severe Crohn’s, it probably wouldn’t pass. I’d end up in surgery. I think.

It would be nice to have an answer, even if it’s a complicated, unpleasant answer. Knowledge is power, and I don’t mean in the evil, megalomaniacal laughing villain sort of power – I mean the power to make good decisions about your own life. I am almost pathological about trying to make rational decisions (gets messy, since life is messy, and often there’s no “right” answer).

So.

Next week, I’m going in for – sigh – a colonoscopy. This is how Crohn’s is diagnosed. Two days after that, I’m in for day surgery to correct a problem that might be caused by the Crohn’s. After that, it’s a crapshoot (oh, I’m such a wit). I don’t know what will happen.

The epiphany mentioned in the title is pretty brief, and can be summed up as follows:

I’m pretty active and healthy – true. I can do physically demanding tasks, if I am careful and sensible – true. But I am also, at the same time, sick. My body has a lot of crossed wires. I get very tired very easily at the moment, and I need to plan out how I spend my resources. This has been true for the past year.

The fact that I haven’t been able to concentrate through the brain fog enough to write any papers for the last year? The fact that I seem to repeatedly need to nap in the afternoon (I soldier through this at work and collapse when I get home)? The fact that I’m accomplishing the bare minimum?

Is actually not my fault.

I’m not lazy. I’m not stupid. I’m not incompetent. I have to keep telling myself this.

I’m just very very tired, because I am sick – even though I don’t quite believe it myself, because I’m so active, so I end up sort of accusing myself of faking (it’s very odd) – and I am managing that the best that I can.

And this sort of self-compassion is an epiphany. I don’t usually cut myself a lot of slack, but I think I have to start learning to, because my body has a few things wrong with it that make life a little harder.

I will still do the things that are important to me. I will get it done.

It’s just going to take a little longer, and that is okay. It has to be okay.

 

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