The more I learn about Addison’s Disease the more I’m convinced it’s been creeping up on me for decades. Steroids, taken for my respiratory problems (COPD since 1996), have probably slowly trashed my adrenal glands. Taking steroids causes the adrenals to reduce their cortisol output until, eventually, they stop entirely, while also ameliorating the more dangerous effects of adrenal failure, aka Addison’s Disease – it explains so much that has no other explanation but which has tended to be written off as just more ME/CFS crapola.
Consider the timeline:-
Autumn 1984 – prescribed steroids for the first time. Not stopped since. When I wasn’t taking oral Prednisolone, my inhaled steroid dose was so high that it produced the same systemic side effects.
Autumn 1985, almost exactly a year later – first “ME” symptoms show up – nausea and severely disabling muscle and joint pain, which are also typical of Addison’s.
Autumn 1986 – issued with first wheelchair (Why does Autumn feature so strongly? No idea.)
My continuing steroid load probably staved off a major Addison’s crisis until I dramatically reduced my inhaled intake mid 2012 (lymphoedema was getting worse by then, restricting my activity levels so much that I didn’t need the same high levels of medication), and I crashed in flames in September 2012 – more pain, no appetite, nausea, vomiting, diarrhoea, and depression so severe I was unable to take care of myself – I was just waiting to die. All of that is typical of Addison’s.
Addison’s was actually diagnosed March 2013, after I almost died from anorexia (a feature of Addison’s) , which put me in hospital for 6 weeks.
Of course, this being Arrowe Park Hospital, the consultant fucked up and failed to tell me about the diagnosis. Adrenal insufficiency was mentioned in passing but, at the time, I was so out of it, it meant nothing, and it was never mentioned again. He even hid it from my GP, burying it deep in my discharge notes – he could have killed me doing that. Having said that, my GP found it once I’d poked him with a stick, so no real excuse for missing it first time round. One of the features of discharge notes is the prospect of them containing stuff the GP wasn’t aware of prior to admission, so reading them carefully is pretty bloody vital. Clearly that didn’t happen.
It was only in the last couple of weeks I made the connection with Addison’s, downloaded reams of information from the Mayo Clinic, the Addison’s Disease Support Group, and NICE (see this post for links), self-diagnosed Addison’s and wrote to my GP asking for confirmation – and, somewhat to my dismay, got it.
So have I ever had ME? Yes, I know I revisit that question periodically, but this is the first time I have had cast-iron proof of an alternative diagnosis and, really, what are the chances that I’d develop two conditions, with the same set of symptoms, simultaneously? Pretty remote, I’d have thought though, of course, not impossible.
And ME diagnosis is notoriously iffy, based as it is on medical history and symptoms, and totally lacking in even a single objective (and proven beyond doubt), diagnostic test.**
**Note for the excessively touchy – I’m not saying ME doesn’t exist, I AM saying there’s a good chance I’ve never had it.
Based on my experience, then, I would say that anyone with ME and a condition that is being treated systemically with steroids (even topical steroids – ointments, inhalers – can have systemic side-effects if administered in sufficient quantity, as I know to my cost), would be well advised to make sure they don’t have Addison’s, either as well or instead.
Because while ME can wreck your life, Addison’s is worse – it can kill you – but, on the other side of the coin, it is eminently treatable once diagnosed.
Something to think about, anyway…