Good news: it’s not a disease you can catch or ever find an ICD-10 code for! Though it is a condition you can have, whether you’re a patient or a doctor IMHO. You may want an ICD-10 code for it before I’m done in fact…
How is that, you rightly ask? Well… an old saying goes “If your only tool is a hammer, then every problem starts to look like a nail.”
That is to say, if you’re given a hammer, you may just find yourself pounding on everything as though it were a nail for better or worse since that’s all that is in your toolkit, metaphorically speaking. Which doesn’t work so well on screws and hex nuts, right? The attribution of this adage is murky and unresolved, but I’ll lean toward Maslow in 1967. (A great year, if I do say so myself.)
So what is driving me to refer to it in a whole post? Well… as I slowly but surely peeled back the many onion layers of what I affectionately call “The Chronic Constellation” after observing thousands of people online and hundreds live in person as a support group leader since 2012 with either a form of EDS or the newly recognized Hypermobility Spectrum Disorders, or a form of Mast Cell Activation Disease (MCAD, the umbrella term for all forms including MCAS and mastocytosis among others), I found this adage to be fairly true.
That is, whenever I would hear hypermobile patients in the EDS /HSD groups complaining of signs of MCAD or something else on and offline in support groups, I would struggle to get them to see this possible potential common comorbidity, despite pointing out their really clear and sometimes gross signs of it in themselves or their families. (Gently of course.)
Frequently, once they recognized an MCAD trigger or two, they would get a lot better in one or more ways. Hypermobility lessened, pain and IBS reduced, sleep improved, and more. But no, you see, they had a hypermobile “hammer”, so everything was a hypermobile “nail”. Not all were open to hearing about any other possibilities that might help them get or fare better, or better explain their symptoms and issues.
And vice versa, when I started leading MCAD support group meetings for the US Pacific Northwest chapter of The Mastocytosis Society in 2014, the reverse happened: I would see sometimes obvious and even grosssigns of hypermobility in the patients, but would frequently encounter flat out denial of same, despite them waiving super flying bird hands at me, while their veins popped among other things. (Easy bruising, complaints of fallen arches, weak or crooked teeth, tendinitis, bursitis, chondromalacia patella and much more.)
Later, I noticed that a majority of the MCAD patients and their families had one or more autoimmune diseases. (Usually multiple.) Hashimoto’s and Sjogren’s syndromes were the most common, followed by Lupus and MS. Here’s the thing: this made it even harder for them to see their underlying hypermobility spectrum disorder that I could see signs of – crooked/crowded teeth, highly near-sighted, easy bruising, bendiness of varying degrees – just not as much as those without an autoimmune disease.
So they all had autoimmune hammers, making everything an autoimmune “nail”. This is so common, it even got baked into the new hEDS diagnostic criteria in 2017 as a point against you: if you have such a disease, you have to show more signs of hypermobility than other patients, not less, which seems a bit backwards to me, since by nature it reduces your apparent hypermobility. (Lends to stiffness in most.) And you have to have a diagnosed or diagnosable first degree relative for instance, to pass Criterion 2 here.
And I’m not past diagnosing some doctors with “Hammer Syndrome” either. For it is precisely points like this last one that make it so hard for some of us to get recognized and diagnosed I think. I lost track of the number of patients in either camp (hypermobile or MCAD) who did have comorbid autoimmune disease, and once they were diagnosed with that, got no further medical investigation despite plenty of signs of these conditions. Again, hEDS and MCAS are not rare, just rarely diagnosed!
In fact, I’ve started to wonder what else rheumatologists ever diagnose, if anything? Seriously. It’s really quite ironic, since hypermobile and MCAD patients both present with loads of wide spread joint and other pain – usually diagnosed as fibromyalgia (another major comorbidity– and hammer).
The next major “hammer” I see a lot in both doctors and patients is Postural Orthostatic Tachycardia Syndrome, or the POTS “hammer”: since heart rate and blood pressure are so easily measured (again, that low-hanging diagnostic fruit gets picked first), and it has such a dramatic effect on the patient (usually) that they don’t hesitate to go see a doctor about it.
Again, hammer syndrome isn’t unique to patients by any stretch. And I’m quite convinced the presence of it in our doctors is one of the main reasons the hypermobility syndromes at least have gone so poorly detected all these years: because rheumatologists at least have primarily been holding “autoimmunity hammers” in my opinion.
Seriously. As previously mentioned, they seem to have no trouble at all plucking this low-hanging diagnositc fruit which comes with readily identifiable bio-markers in most cases after all. And once one is identified, well then who wouldn’t attribute all of one’s widespread joint pains and debilitating fatigue to something like Rheumatoid Arthritis or MS? Why would you look further, and notice their crooked teeth, myopia, visible veins, eashy bruising and funny posture after that?
Or, see a red flag when they also report lots of sensitivities and allergies to many medications and chemicals and scents. Or complain of my favorite “hammer” of all: fibromyalgia. I’m not saying fibromyalgia isn’t real: it very much is! I just feel very strongly along with Dr. Jaime Bravo in Chile that it is frequently an under or mis-diagnosis for many with either an HSD or hEDS now. No, not all, never all, but many. (Dogs don’t bark – hurt – for no reason, and neither do we. )