Now that I’m determined to begin writing again for my own mental and emotional health, I’ve realized that sometimes I don’t know where to start. I have a list of topics I want to address – but the problem is that they’re so intertwined that I don’t know which one to start with, or how to talk about one without having already mentioned an aspect of another.
For example, I want to talk about unsatisfying diagnoses, but that also involves talking about the return of my fatigue, how utterly evil “non-restorative sleep” is, how do you know when something is a recurring or worsening symptom of a diagnoses you already have versus something new, and a lot of other topics that are also on the list. So, please forgive if the posts for the next while have a lot of “I’ll talk about that more later” and links to previously written posts. Hopefully all the story will get out of me eventually.
I remember writing in the past about how long it took to get my diagnosis of Sjogren’s and how I felt like it was a game of musical diagnoses, but once I did finally get a diagnosis that fit with what I felt was going on in my body it was a relief. A name, something specific. Something that represented that I was not alone. Something taht said I was not imagining these symptoms. Something that could be researched, fought against, explained to others. There’s a lot of grieving that goes with a chronic, no-cure-possible disease diagnosis is given, but there’s also a sense of relief when the diagnosis is made.
So fast forward to now, when I want to talk about unsatisfying diagnoses.
I’ve been fatigued for about 15 months. Not tired. Not “not enough sleep” or “working too hard” or even “stressed” – it’s bone-deep fatigue. Can’t keep my eyes open. Spend half my brain power and every minute of every day thinking about sleep in one way or another – how to fight it, when I can next get it, how it will effect my schedule and massive to-do list if I attempt to sneak some in, and so on. Fatigue.
I’ll talk about the 15-month long path to determine the cause of the fatigue in another post (see what I mean – it’s all tangled up…I actually started to explain the timeline here but then deleted the paragraph because I realized that’s not what this post is about – that’s a story for another post!), but I ended up with a follow-up with a sleep medicine doctor after my sleep study (second one – first done a few years ago) revealed no real explanation for my daytime fatigue – no apnea, no excessive limb movement, no unusual wakings, etc.
She sent me for yet another overnight sleep study, but this time to be followed by a Multiple Latency Sleep Test, or “nap study.” It’s the 7th circle of hell where they make you stay awake after your overnight study for 2 hours, then have you lay down in a dark, quiet room and see if you fall asleep. If you fall asleep they let you sleep for 15 minutes and then wake you up (here’s where the torture comes in for a person with a sleep disorder…just let me sleep people, quit waking me up!!!). They repeat this every 2 hours. And you have to do it at least 4 times – sometimes 5. I got to do it 5. I was in the room at the sleep center for 20 hours total.
Everyone I described it to before I went said “there’s no way I’d be able to fall alseep every 2 hours after sleeping 8 hours at night.” My response was “watch me.” I had no doubt in my ability to fall asleep over and over again all day long.
And I was right – not only did I fall asleep during each of the 5 nap times, but I did it in highly unusual time. Falling asleep during all 5 “nap times” is unusual. And anything under 10 minutes from the time you start to the time you fall asleep is unusual even for people that do fall asleep. My fastest was 3 minutes, slowest was 8 minutes and average was 5 minutes. I reached REM sleep in one of my naps.
To be diagnosed with narcolepsy, they like to see patients fall asleep in all 5 naps and they often reach REM in two or more naps. I only reached REM in 1 nap.
So instead of diagnosing me with narcolepsy, the official diagnosis is “idiopathic hypersomnia.” Although the doctor did say that it’s something we’ll “keep an eye on” as I may be on my way to a narcolepsy diagnosis. It’s good to have life goals, I guess. 😉
This may be the singular most frustrating diagnosis I’ve ever heard.
“Idiopathic” means a disease for which the cause is not known.
“Hypersomnia” is a sleep disorder characterized by excessive daytime sleepiness.
So the official medical/scientific term translates to “we have no idea at all why you are so tired all day long.”
While awaiting the results of my MSLT (“nap study”) and after the results while waiting for the follow-up with the sleep medicine doctor, I researched a lot about idiopathic hypersomnia and narcolepsy (which is a disorder that I knew nothing about other than a vague idea of people dropping to sleep at random times no matter what they were doing – incorrect, but I’ve found lots of other people have that vague impression as well so at least it wasn’t just me!). And, lo and behold, but there is data emerging that points to narcolepsy being an autoimmune disorder…surprise, surprise, surprise. As everyone with an autoimmune disorder knows, once you have one, others like to come to the party!
The two disorders are pretty much treated the same way and the sleep medicine doctor started me on the most common medication to treat it (more about that in another post – told you I’d do that to you!). So in practical terms it doesn’t really matter what the diagnosis says.
But the difference between an unbelievably disatisfying diagnosis of “we don’t know have clue why you’re so tired all day,” a.k.a idiopathic hypersomnia, and a diagnosis that if not understood by many is at least recognized as a real medical diagnosis of narcolepsy was that I went into REM sleep on only 1 nap instead of 2.
End result is the same – treatment and again validation that it’s not in my head, that it is a real thing, that me fighting sleep every minute of the day was not because I was lazy or had poor habits like staying up too late or not getting enough sleep, but it is an actual, diagnose-able, treatable disorder that was seen via all those crazy electrodes I had paste-glued to my body for those 20 hours, is slightly satisfying.
But, I’ve got to say – an official diagnosis of “we don’t have any clue why you’re so tired all day” doesn’t seem like much of an official diagnosis to me and it somehow doesn’t offer the same sort of semi-relief that a more “real” sounding one would offer.
3 thoughts on “Unsatisfying diagnoses”
My rheumatologist no longer discriminates as to whether something is a result of rheumatoid disease or Sjogren’s syndrome or something else, but says “that’s common in connective tissue diseases.”
Thanks for writing and sharing your attempts to make sense of it all. ?
I was diagnosed with idiopathic hypersomnia several years ago.I had gone for a sleep study due to my extreme fatigue and the fact that 5 of my 8 siblings have (had) apnea. Docs weren’t even concerned about the diagnosis. To them is was a non event. Gonna call for a copy of those results. If I remember correctly I was there all the next day and was to attempt to fall asleep every hour? I fell asleep within 5 minutes every time. Wasn’t told about REM sleep.I am still trying to get a diagnosis, thinking strongly it’s Sjogren’s. My mother had it as well. She died from large B cell lymphoma.
Your blog and your book have saved me from thinking I’m going nuts! Seriously they have!!
I hate unsatisfying diagnoses too. My first Rheumy diagnosed RA and OA, both based on symptoms and tests. Now RA is dismissed, maybe its spondyloarthropathy. My SS was first mentioned 2 years ago, I’d had it for 8 years by then, these periods of ‘dryness’ and the vulvodynia associated, all blamed on diabetes. Cos Drs are lazy, if you have a chronic disease, they don’t bother, they chuck it in that basket. After my 15th medication for oral thrush I said ‘enough! My diabetes is very well controlled, you can’t blame that anymore, I was lucky, my GP had other SS patients, 6 months to lip biopsy. But in relation to this post, I have Obstructive Sleep Apnoea so they just tag on it’s SS or Fibro fatigue!