I’m cooking up lots of helpful solutions for all of us afflicted souls, literally as I type this. Meanwhile this is a quick house-keeping (place-holding) post to let my slowly growing reader base know that I’m working hard on sharing the “What to do about it” aspect as soon as I can.
The trick is, I’m trying to decide which parts should be fixed static pages, vs which can just be posts that end up going downstream in time that someone many never find later. And there’s so much to share, thanks to all the comorbidities and complications we have!
So bear with me while I get that sorted out. I also am trying to decide on how best to present such information, since both a) I’m not a doctor, and b) it’s as individual as fingerprints and what works for one may not work for all – or (m)any. (Seriously). And always consult with your doctor or health care provider before starting or stopping any form of therapy, always.
That said, I feel strongly that while there’s no true “cure” for Ehlers-Danlos Syndrome as we well know (we can’t re-write our DNA – yet!), there are certainly plenty of ways to manage it and even generate some degree of recovery or stabilization, as I’ve been doing diligently the past two years since my personal “storm” of onset in 2012 that left me unable to walk for almost a year.
I’m now walking again (2014), albeit still with one Loftstrand (forearm) crutch due to a loose R leg socket and bum foot, but I can stand again free hand now FTW which really rocks my world and is enabling me to incorporate more things like juicing and allergy-free cooking into my tool kit. (I spend a LOT of time in my kitchen now!)
However, to give you all something to get started on, I’d like to say that I feel it best to take a three-fold approach, addressing mind, body and spirit to enact any real recovery or stabilization with this condition. You can try addressing just any two out of those three and make some headway, but I feel strongly you won’t really get far without addressing ALL three to some extent ultimately. (Kudos to those of you who already are! Good on you!) I also think this will be an ongoing work, whence taking my time to organize it.
Taking these in reverse order, as for the spiritual part, I’m not saying you have to join a church either! You can if you want of course. That’s considered organized religion, not spirituality which I feel does not require an organized religion to address, even if that can help some. It’s not for everyone and not required IMHO.
But definitely devote some time to your internal self, getting in touch with your emotions and what’s truly “driving” you (your own goals, or someone else’s?) and taking some time to be quiet each day, any way that you can, where or however you can to help you stay in touch with your true self, and your wants, needs and goals. (Journaling works for many this way). I find many of us have trouble doing this thanks to both all the signal “noise” we’re getting from our painful broken bodies (SPD and neuropathy anyone?), and how frantically busy we find ourselves either just trying to cope, or, as is often the case I find, over-acheiving. (More on that later).
ETA in 2023: and highly co-occurring ADHD, I’ve since realized! Oy.
As for the body, most who have experienced much recovery have gotten best results by taking high(er) doses of Vitamin C which helps lay in new collagen aka “procollagen”, the pre-cursor to collagen itself, according to my geneticist. I’m taking mine orally via over-the-counter (OTC) products, but another hEDS patient had really great inspiring results by getting injections ultimately, thanks to bypassing her poorly gut.
It’s also my strong feeling that by then adding proper and regular core-strengthening physical therapy through either warm water therapy, Pilates (not so much yoga which stretches us back out), or other EDS-centric and savvy PT as able, we then “train up” those new but faulty collagen strands as soon as they appear, and that can help us hold together a bit better despite so many of them failing on us so early and often. (We turn over millions of body cells daily, just not all at once, thankfully!)
I noticed a distinct reduction in my pain levels after just one month of 1000/day vitamin C in 2012 as my geneticist hinted might happen based on this paper and slow but steady strengthing ever since, thanks to all my diligent efforts at physical (physio) therapy both with a PT and self-guided (for the last year). I’m now on 3000/day Vitamin C and holding steady. But I think increased magnesium, calcium, Vit D, Vit K and zinc are also crucial cofactors along with a good probiotic to help absorb these nutrients (we need proper gut bugs to actually digest them and make those elements biologically available from what I’ve read).
I’m one of the lucky ones who can take cheap over-the-counter (OTC) vitamin C made from ascorbic acid though, thankfully. Many find they cannot, due to corn allergy (ascorbic acid is made from corn), and might succeed with Sago Palm based C. (Twin Labs has some). There are still a few unfortunate souls who can’t even take that form either, sigh, and must resort to getting as much as possible through diet alone and or nutritional formulas, while keeping their mast cells as happy as possible. (No easy feat!)
Again, please consult your doctor or health care practitioner (I highly recommend a naturopath or functional medicine doctor in the US if you can see one) before starting or stopping any supplements for yourself. We are all literally different as already noted, and what works for one, or even a majority, may not work or be recommended for all. (Some have kidney trouble that might throw a further wrinkle in their nutrient balance).
Trust your gut and listen to your body. It will tell you what you need to know best. We all also have individual allergies and mast cell sensitivities, and have to find what combo of foods and ingredients and evnironment works for us, no matter what others are telling us. I happen to do best on – and even seem to need – a high fat/protein ketogenic diet, but I have a couple of EDS friends who absolutely cannot eat this way- it makes them very ill. So despite my raving success on such a diet, it would definitely not be for them for whatever reason.
I also discourage suddenly switching from vegetarian to meat eating overnight if you should ever try – you need to develop the gut biome (bugs) and digestive enzymes to handle it. (I’ve been omnivorious all along, so this was not a problem for me).
I’ll conclude by noting that most if not all of us end up experiencing some form of mental health issues – whether mood and anxiety disorders, depression, or other. And no, not just because our doctors so often reject us – which alone can be quite depressing and frustraing. That would be considered “situational” depresson, alleviated once that situation is resolved.
But many if not most of us do have signs (often subtle!) of an underlying mood or depressive disorder even still. ETA 2023: I’ve since come to realize that we comprise a good portion of the autistic and ADHD community. It seems bendy bodies come with “bendy” brains. And this neurodivergence also lends to a lot of our mental health issues from secondary trauma and more.
Just know that recognizing and working on these issues will seriously help the other issues, as you keep your body in a calmer state, which helps it to do the hard work of healing and restoring itself, often while you’re sleeping.
Many benefit from Cognitive or Dialectical Behavioral Therapy along with individual counseling along the way, if not also some medications in some cases.
Good news, I’m finding more evidence that proper (individually-tailored) diet can affect this an awful lot, however, so stay tuned for that exciting news. I’m starting to think a good probiotic may be the best “antidepressant” you can take in some ways. But please don’t stop your medications based on this! Talk to your doctors first and alwaystaper down any anti-depressants and other meds slowly as directed under medical supervision, please, thank you! (Unless you’re having a life-threatening anaphylactic reaction of course, in which case you should obviously stop the offending med immediately. But you’ll know this right away usually.)
You might start a food journal meanwhile including a “how I feel” (emotionally and physically) note after each meal in the meantime to start seeing this for yourself a bit. (It helps to eat less complex meals so you can tell which individual ingredients are troubling you, which can be quite tricky.) If you’re not aware of any food allergies yet, consider getting tested for them and trying to eliminate them from your diet. (I didn’t think I had any until I saw a naturopath in 2012 – boy was I wrong, and how!) I’ve never felt better on all fronts than since straightening out my diet – for me.
I’ll stop there, this all requires much more in depth treatment than one such hasty blog post can give! But I wanted to at least get people started down some of the best roads, and know you’re not alone and there is some hope of improvement if you haven’t found out for yourself already. (Please share in the comments so we can all benefit!) And know that I’m working on how to organize my best solutions and tips (I’ve got lots more, trust me) in the best way possible so many more can join me in experiencing a modicum of recovery and stability (literally, smile). While I’m trying to maintain my own – a full time job, presently! So thanks for your patience and stay tuned.
To your health,
Jandroid 3.0 (last updated 9/12/23 after dusting this old post off thanks to a reader, smile)