So you’ve finally gotten a diagnosis, and some validation (hopefully!) Now what do you do about it? Sadly, there’s no single remedy or path to recovery (at whatever level) for everyone sorry, due to the systemic nature and extremely wide variation in expression of the condition in each of us, and the myriad complicating comorbidities I keep mentioning. (For a reason! They’re common in us.)
Not all will want ring splints or need a form of bracing for their joints, others can’t live without them. Some will need Chiari decompression surgery and/or cervical spinal fusion or spinal cord de-tethering, but not all. Some will have a form of MCAD, and need an aggressive treatment plan to keep them from reacting to just about everything they eat or breathe. (Seriously).
Others will have any number of other complications (thyroid imbalance, immune trouble, mitochondrial disorders), though we do have a few common themes, including extra allergies and sensitivities (from MCAD), migraines and headaches of all kinds (including hydrocephalus off and on), frequent urination, IBS (often constipated, with quick flips to diarrhea, whee), pain and fatigue of all degrees, types and durations. (I will address pain in a separate post – it’s much too complex for this one).
That said, I don’t recommend any single particular therapy/remedy for everyone, as clearly no single remedy will work for everyone nor will always be appropriate. (Especially diets – many keep recommending a particular “low histamine” diet, when technically any proscribed diet may not be low histamine for me if it has any of my allergens or mast cell triggers in it, no matter the authority behind it.)
But I do recommend some approaches. (Going as allergy & trigger-free as possible for you being one). And a mindset, with apologies to those with leftover PTSD from algebra class:
Solve for both X and Y
Where X are the mechanical or physical causes of our issues (impinged nerves, loose ligaments allowing slippage, dislocations, stretched or torn tissues, herniations, etc.), and Y are the bio-chemical causes (mast cell reactions, allergies, hydrocephalus. e.g.)
I say this, as I repeatedly see people struggling to get control of an issue such as headaches, frequent urination, pain, brain fog, or nausea, and everyone in a support thread online will be suggesting just one approach based on one angle (X) and completely missing the possibilty that Y may also be a factor, and they may get some relief once it is also addressed.
For example, headaches can and often do have BOTH biomechanical (X) AND biochemical (Y) drivers (causes), including everything from tension from our loose neck ligaments making our upper back and neck muscles strain to keep our heads on our shoulders (literally, X), to impinged nerves or vessels from slipped neck vertebrae, or cranial-cervical settling trapping our “brain juice” (my term for CSF – cerebro-spinal fluid.)
But we may also have some low level (often external communicating) hydrocephalus (incrased brain juice) due to an allergic or mast cell reaction (those pressure headaches anyone?) and actual neuro-inflammation due to mast cell activity (they allow things to cross the blood-brain-barrier more than most doctors realize, alas, and the little buggers tend to line our nerves and blood vessels, sigh – or Y). I think mast cell activation may well drive many migraines the more I observe. (I think they can cause some vessels to spasm in our skulls lending to those sudden sharp ones on one side, e.g.)
Many have all of these issues going on, lending to that essentially “permanent” headache so many of us know too well that just sort of ebbs and flows and comes and goes, sometimes with the weather. Mine is blessedly slowly easing more the more vitamin C I take, read: my neck keeps strengthening. (Vitamin C helps you to lay in new collagen. While still faulty, the more you’ve got at any time, the better.) At least I don’t have to remind myself to breathe in the day time any more! (That’s called CNS Apnea.)
Frequent urination is another issue that can stump us until we consider both X and Y angles to it. Some folks suffer from impinged nerves around the lumbar region lending to this, but others have to pee like racehorses often thanks to mast cell activation. (I’m one of the latter tho thankfully it’s greatly reduced since going allergy and trigger free at home).
Some may even have issues with urination from tethered (spinal) cord, also common in the EDS community. (We really really can and do have all these wonderful issues, doctors, sorry!) Some poor folks will have a combo of the above. So if you simply solve the mast cell angle by eliminating foods and allergens (Y), you may still have trouble if you have slipped discs in your lumbar region causing spasming from impinged nerves leading to the bladder (X). Or vice versa!
My final example for now is nausea and vomiting. This can be brought on suddenly from several causes – the most common being allergic or mast cell reactions to foods/drugs. But some experience nausea from sudden BP drops from their POTS and dysautonomia, and others end up impinging their vagus nerves triggering a bout of vomiting seemingly out of the blue. If you only took medication for nausea or eliminated your food allergies (Y), but never realized that every time you twist to the left or lean wrong you are impinging your vagus nerve (X), you may never get relief. (And vice versa!)
I’ll stop there so as to get this post out before December, smile. But I could go on. I think you all get the idea though. Try to consider multiple angles and possible causes for all of your issues as much as possible when dealing with Ehlers-Danlos. That said, sorting one’s sleep (finding a way to sleep well, and as deeply as possible) along with a good clean (allergy and trigger free) diet where possible can go a long way toward resolving several of our issues, including some dysautonomia and headaches and overall pain levels from systemic inflammation.
It’s a very tangled health web we zebras weave. Is it any wonder our doctors can’t figure us out so easily, when they’ve often specialized in one body part or system? (E.g. podiatrists, dentists, cardiologists, neurologists, etc.) Everyone will do better when medicine stops “silo-ing” the body into these separate parts and takes a more functional approach overall IMHO.