EDS and IBS

abstract image of twisted red lines

Feeling a bit twisted up

One of the most common comorbidities of Ehlers-Danlos Syndrome (and, no surprise) Mast Cell Activation Diseases is IBS, or Irritable Bowel Syndrome.

Yes, we’re going to talk about our innards and toilet habits folks! This post is not for the squeamish. But then, life with EDS is not for the squeamish, and… this is a major part of our reality for a vast majority of us, if not all. And yes, you’ll wanna settle in again, it’s another longish read.

So what is IBS? For those unfamiliar, much like the term “Fibromyalgia”, “IBS” is another “catch-all” bin condition that is what you’re left with when you’ve eliminated all other possible causes of your GI distress and pain such as the flu, Crohn’s or colitis, or a parasite, or… etc.

In layman’s terms, it is a condition where you experience any and all forms of gut pain and discomfort and can experience wide variances in  your bowel habits, from lots of constipation to sudden diarrhea – and sometimes both even in the same day. (And in one strange experience of my own recently: even at the same time – yes, truly – hold that thought.)

Yes, you might want to put down any food you’re eating for the duration of this post! We’re gonna get real. Guess what? While unpleasant to talk about, everybody does poop – or surely should, and if they don’t, they’re in for some serious trouble if they’re not experiencing it already.

What goes in must (mostly) eventually come out, and in most cases (you folks with stomas excepted), it comes out the “other end”, or your bum, as the English say. (Those with ileostomies & colostomies please be patient with the rest of us.)

So pooping is a natural bodily function, and ideally should happen once a day, if not a couple times even. (Many folks find themselves ready and able to go in the morning after their first coffee or other stimulant of choice.) Yes, some people regularly poo two-three times a day depending on their diet and gut health (biome).

But some poo only 2-3 times per week. According to this source, anywhere from 2-3 times a day to 3 times per week is an acceptable range. (Beware of annoying pop up ads on this site, sorry, turn your speakers down.)

And if you’re healthy, you will form a semi-solid “log” daily (the proper term is “stool”) that lands right around a “4” on the Bristol Stool Chart. (Ideally, they say you should poop a “5” a couple times a day. I’ve only done this a couple of times in my life, but then the deck is stacked against me as you’ll see.)

Yes, there’s a poop chart, who knew! Now you can amuse your friends and torment your doctors (or is that torment your friends?) with your new-found insight into your poo. (I have bragged about my recently regular “4” to my doctor – he should be proud – it wasn’t easy to achieve with this lousy condition!)

My naturopath told me our poo is made up of 50% bacteria in fact, so the healthier your gut biome (collection of intestinal bacteria we live with that helps us to digest food), the healthier (and better formed) your poo. (And usually easier to eliminate or emit.) And generally, a high natural (vegetable) fiber diet with plenty of water (not soda or dehydrating coffee) will help with this too.

But hold that thought. No surprise – where there is Ehlers-Danlos, there are always exceptions! (If you’ve been reading my blog for any length of time you’ll be familiar with this drill by now. We put the “syn” in syndrome, and blow just about every curve you can find.)

Unsurprisingly, I was diagnosed with IBS early on in my diagnostic journey, not long after my appendectomy at age 20 in college. (I’ll never forget that, I tried to blame the dorm food – no takers.) The IBS pain I first experienced around age 23 started low and in the right quadrant, right around my appy scar. So we naturally looked for adhesions with ultrasound, but found none. This was in the early 1990’s too, mind you. (We knew a lot less than we do now back then.)

As I was a mildly stressed college-age female from a rough childhood in an alcoholic home, I was quickly written off as just “depressed with IBS”. Which wasn’t entirely inaccurate, but I now know many more of the drivers of both conditions, which I’ll now gladly share.

The medication given didn’t do much at all for me, so I ended up giving it up (probably wise in 20/20 hindsight). This was also true for the SSRI’s I tried through the years – in fact, one (Wellbutrin) made me mildly psychotic once. Yet, because doctors have SSRI hammers, everything is an SSRI nail.

Yet the pain never subsided, and in fact, slowly grew to encompass my entire lower innards, from the duodenum on down. (I now hurt from my stomach on down, constantly.) I suffered wildly varying bowel habits, with regular bouts of constipation punctuated by sudden bouts of diarrhea with lots of bloating and gas on top, and rarely the occasional “balanced” day or two in a row.

I ate a very “Standard American Diet” at the time, including lots of bread and other carbs (pastas, cakes, cookies), even though I probably ate more fresh and cooked veggies and less candy than many. (I was brought up on a very mid-western style/German home-cooked meat and potatoes diet with some veggies on the side and not much junk thankfully. Eating out was a treat.) I did also drink a little alcohol – not a lot, thanks to my childhood experience. (I no longer drink at all – it’s a trigger now.)

Needless to say I learned early on about adding fiber to battle the constipation but ironically found doing so swung my system wildly to the other direction – and too much so. I loved gardening and included plenty of my own fresh veggies and tossed in a decent amount of fruit though I found it hard to digest. But nothing seemed to break this mad GI cycle, and I suffered mostly silently through my young adulthood with no true relief.

At one point I had both upper and lower GI studies done, only finding I had a mildly slow transit time, but nothing further. (No ulcers, diverticuli, etc. knock wood.)

I slowly learned to navigate my diet and found a combo of carbs, meat and veggies that helped me achieve a slightly more “normal” elimination schedule and experience. But I never got any good answers to this problem and stopped consulting doctors who unfailingly prescribed…. yup, SSRI’s. (If only I could have seen a naturopath 20 years ago!)

Fast forward to early 2012, and my sudden EDS onset “storm” or “cascade” that took me from walking to wheelchair in just 3 weeks at almost 45 years old. And suddenly I began to find some answers to all my issues – including, no surprise, my IBS.

Not only did I find it to be extremely commonly comorbid in the EDS support groups I was in (on and offline), but also in the comorbid MCAD support groups I ended up in also. I also got to consult a naturopath (finally) in latter 2012 who recommended both finding all my food sensitivities via the Basic e95 food panel (blood test), and taking a very expensive but comprehensive therapeutic level probiotic she highly recommended as the only one that gave consistently good results in her experience.

Needless to say my blood panel came back showing I was reactive to all the foods I had been eating the most – especially eggs and gluten and beef. But also tomatoes, dairy, yeast, and more. So much for my fried eggy sandwiches! (I’ve since done an IgE test and it was negative, so all of these are IgG driven obviously, knock wood. I’d have been much more anaphylactoid otherwise I’m sure.)

My ND admitted it might be hard, but urged me to try my best to go on a full elimination diet after the holidays in January 2013. (That is, eliminating all the foods we found me moderately or more sensitive to.) I was interrupted in this plan by the need to visit my poorly aunty (a Catholic nun) back east when she suddenly entered hospice in a coma in February 2013 and I flew back to be with her for two weeks. She rallied and I just saw her again for her 70th Jubilee (at almost 92) but needless to say, I had to eat whatever I was offered as the guest of the convent, so all dietary bets were off.

However, I’d landed in a great holistic EDS support group online in the meantime, where I was exposed to all kinds of great functional and holistic medical info, including an introduction to leaky gut and the much touted GAPS (Gut and Psychology Syndrome) Diet for fixing it there. (There are other diets, and you should work with your chosen practitioner – whether ND or MD to find the right one for you.)

Upon looking up leaky gut, I realized this made a lot of sense in light of not only our weak epithelial layers, but all of our likely comorbid gut dysbiosis and proclivity to gluten sensitivity. Which some say gives everyone leaky gut whether they know it or not.

I quickly realized the GAPS Diet would kill two birds with one stone: start to help heal my gut, and definitely eliminate all my food sensitivities! So I started it in earnest upon returning.

The GAPS diet takes you down to just a bone broth of choice to start, then you slowly add only whole foods back in just one at a time, only one every 3 days so you can truly detect any reactions and sensitivities. The collagen filled bone broth helps soothe your poorly gut and help it start to heal. Absolutely no hard fibers or roughage allowed for several weeks so the poor thing can start to truly heal.

Lo and behold – I found my pain reduced, gut calmer, sleep improved, brain fog improved, memory improved, and so much more. Not least of which was elimination improved also. Who knew what all inflammation could do until you eliminated it. (Well okay, all you smart functional medicine types out there, I know I know. Bear with us while the rest of us catch up!)

I then took a webinar on leaky gut and Small Intestinal Bacterial Overgrowth (aka SIBO, pronounced “see-boe”) and learned that you can have a stuck ileo-cecal valve between your large and small intestines that can allow gut bugs to back up into your small intestine lending to this overgrowth.

They proceeded to describe how you can actually manually massage your ileo-cecal valve closed if it’s open, but I haven’t had the nerve (er, guts? sorry) to try this myself. But it struck me that this is likely true in folks with EDS – who have weak valves and connective tissues all over. I’m betting we are the so called “tough cases” these guys talk about so much.

This excess of bugs there then also lends to leaky gut as the little buggers produce something called (I’m not making this up!) “zonulin” (so Trekkie sounding, lol!) which helps loosen your tight-gap junctions in your gut, causing “leaky” gut allowing over-sized food molecules to pass through.

So instead of perceiving it as a friendly food protein, it’s seen as an invading substance and your immune system is triggered to activate and “attack” it. Whence all the inflammation, which can help drive autoimmune diseases too. Poor innocent lentil!

Did I mention that sugar encourages all the wrong/bad bugs to thrive, who produce the most zonulin? Of course they do. Cuz, EDS.

Toss in low stomach acid on the top end failing to kill enough bugs on the way down, and voila: SIBO which causes loads of excess gas, bloating and discomfort.  And lots of belching, farting, etc. Ding! I had all the signs of this also, no surprise.

Good news, you can get better with either natural herbal remedies, or in worst cases a course or two of anti-biotics to clear up the excess. Which you then want to quickly repopulate via health pro-biotics before any “bad guys” can get a foothold and produce more zonulin. Going low/no-sugar including natural sugar can really help too.

That said, I’ve not been surprised to find this a recurring problem (nay, even intractable) among EDS patients, as I’m betting our weak connective tissue lends to a chronically leaky  ileo-cecal valve constantly allowing for this back up.

And I’m trying to remember what Dr. Meglathery told me may be causing the chronically low stomach acid (possibly a thyroid imbalance if my presently leaky memory serves? I need to look this up again – hypothyroidism is rampant among us too, no surprise), but it came up while discussing her RCCX and Illness Theory this past spring (2016). I think I caught a comment recently that CRH or cortisol may lower stomach acid. Still looking for backup on this.

And don’t let experiencing GERD fool you either – it doesn’t mean you have sufficient stomach acid either. I’ve also learned that your esophageal sphincter won’t fully close until it senses enough acid in your stomach – and the stomach produces acid in response to histamine (whence H2 blockers being prescribed for lots of MCAD patients, aka Zantac, Pepcid).

So no wonder so many experience GERD with EDS and MCAD of any kind, despite actually having naturally low stomach acid at baseline. Thankfully mine cleared up as soon as I stopped drinking coffee years ago – apparently a trigger for me. I don’t miss it, frankly.

Toss in common hiatal hernias and weak sphincters all over and no wonder we’re sort of doomed digestively speaking. But wait, there’s more! (Of course there is cuz… EDS!)

Then, I learned that diarrhea and GI upset (nausea, etc.) are all common signs of MCAD reactions and low level anaphylaxis, and I began noticing and tracking many more reactions than before. Bye bye coconut, sigh.

But, between eliminating most of my triggers, upping my anti-histamines and adding quercetin (a natural mast cell stabilizer), lowering my stress, eating more organic whole foods (almost exclusively now), adding a therapeutic probiotic (more on that in a minute) and avoiding sugar, and voila: my healthy “4” on the Bristol Stool chart. Usually. 😉

Now, having said that, I got a wild hair one day this last year to eat a bunch of steamed fresh broccoli after I’d had a rare bout of constipation from a medication I took. No, not an opioid either, though those are a common problem for us. Gee, what could possible go wrong?

Uhm, well, the broccoli could turn out to be a trigger (I hadn’t had any in a long time, and not in that quantity), and I ended up experiencing something I later termed “diapation” (alternatively: constarrhea?). This was where I had the strongest urge to eliminate ever, just like I was about to have explosive diarrhea, and yet, not a blessed thing came out!! Nothing! Not even a tiny little rabbit poop. Nada. Sigh.

Oh my word, talk about anguish. The old bathroom stall rhyme came to mind:

“Here I sit, broken-hearted, tried to sh*t but only farted” (author unkown, see bathroom stall walls worldwide). Whoever crafted that is genius. And probably had IBS. And MCAD.

Normally when I have constipation, I don’t also have such a strong elimination urge. I just feel… full. Yes, I want to poop, but I can manage to function albeit unpleasantly at a semi-normal level for a day or two. What surprised me about the broccoli was the absolute certainty I had that I was about to explode with terrible diarrhea, and yet… nada. Truly like a combo of both diarrhea (the urge) and constipation. (Inability to move.) Weirdest experience ever!

Someone in one of my MCAD support groups suggested this was my large bowel dry spasming from my reaction to the broccoli. I believe it, as I felt the broccoli go all the way through my system in a complete spasm, like a rock. All. The. Way. Through. Yes, painful. Take an esophageal spasm, one of my other deep joys through the years, and extend it through the entire digestive tract, following the food bolus as it goes down.

Thankfully, I clearly at least have decent motility – that is, ability to push food through my system and out the other end eventually. Some poor folks with EDS are plagued with another complication called Gastroparesis: literally stomach paralysis. This causes your food to simply sit and rot in your stomach or small bowel, making you quite sick. Basically it’s like constipation but much higher up the system. (Aka dysmotility.)

They suffer terribly from malnutrition and malabsorption as the food never gets properly moved through the system in a timely fashion. Some poor folks end up on feeding tubes and formula just to stay alive. I’m so very grateful that’s not me! I only experience some mild early satiety and anorexia (lack of appetite, not nervosa) in general. Both worsened a lot when I started to react to chlorine in water from swimming and tap water in late 2015. I did lose ten pounds then and grew quite weak until I could eat again.

Needless to say, food sitting and fermenting in your upper GI tract will also lend to increased gas and bloating (and inflammation). So those poor folks have yet another driver to that fun. Some of this is driven by MCAD, but even more by neuropathic trouble likely from an impinged vagus nerve.

I’ve come to recognize sudden my bouts of gastric pain (gastritis) and bloating followed by either constipation or diarrhea to be typical with my MCAS reactions now. (MCAD is the umbrella term for all forms, including MCAS and mastocytosis, NB.)

And of course, as too many of you know too well, opioids induce constipation big time. Thankfully I only suffered a couple months at my worst, as I quickly found mild strengthening as soon as I started Vitamin C, so I could wean off my pain killers. I now only need one on occasion, at most 3x/week generally only if I bust a move. but no more constipation from that thankfully.

I did not take any regular pain meds besides OTC Tylenol and Ibuprofen before 2012. I now live at an average of 5 overall on the pain scale and am fine as long as I can stay there. I have some hot spots that like to spike higher pretty quickly, but I can handle it most of the time, whence only the occasional use now vs daily at my worst in 2012.

No, no fun. Yes, it’s been quite a journey. I’m so grateful I ate my way through France back in 2001 when I was relatively mildly afflicted. Not unafflicted, just less so. So when my doctor ordered me to “please eat!” earlier this year during my chlorine reaction (until I figured that out), I nearly smacked him – he should know I’m a foodie! (I love food, it just doesn’t all love me.)

Happily, I’ve returned to my new peri-menopausal “normal” since eliminating chlorine and fluoride from my life this year. (I’m also back up to a healthy 115 lbs at 5’4″.) And oh yeah, did I mention that hormone changes can make all of this worse for women? Yeah. Toss that on the steaming heap of drivers of our gastric pain and discomfort. Estrogen is a mast cell trigger, progesterone makes you more lax, whee. Girls don’t wanna have that much fun, but alas we get it! And they call us wimps…

Protip: if you gradually lose your appetite altogether -aka anorexia (not nervosa) – and struggle to get almost anything down for a period of time, it’s probably something you’re eating/drinking/are in touch with daily like chlorine in your water, or fluoride in your toothpaste and/or water. (You can get a cheap 5 stage filter from ZeroWater from many larger department stores to help eliminate both if you live in an apartment on SSD like me.)

And oh yeah, MCAD can cause sudden onset of nausea and vomiting at any time. I knew I forgot something! I’ve just had mine so well controlled for so long I’d forgotten – lucky me. But so can twisting wrong (often to the left) and suddenly impinging your vagus nerve. So many causes… so little time! Remember to solve for both x and y with this lousy condition – always!

I warned you it would be quite a journey didn’t I? Hopefully not too much for you! To those who love us and are trying to support us, thank you or being there with us through thick and thin – literally. To those of you suffering with all of this along side me, and who take every meal you keep down as a success, high five and hang in there, and keep those probiotics coming.

It’s not an easy fix, but like all of our issues, I find a multi-faceted approach to work best. Mine consists of a combo of detoxing, stress, sugar and trigger elimination (both food and chemical), an organic whole food diet that works for me (mostly GF DF and grain-free high nat sat fat paleo diet except for oatmeal now), a really good probiotic (I now take just L. Rhamnosus as Culturelle on the Cusack Protocol), lots of steamed veggies that I tolerate, some kale juice on occasion, and my daily Reiki.

Oh, and lots of water, salt and potassium along with all my supps (C, D3, calc, mag, zinc and more) so it all “sticks”. You need magnesium and potassium and salt to actually re-hydrate fully. Plain water tends to go right through us – see the RCCX Theory for likely reasons why pertaining to the CYP21A2 gene.

I still have chronic constant gut pain, but again, my bowel habits are much more regular and ‘smooth’ compared to before. I can live with this much better than the alternative and will, TYVM. All drug-free. (That is, no drugs taken specifically for “IBS”.)

I hope this helps some of you sort out some of your issues too, EDS or no. (And remember, those of you with “Fibromyalgia” are probably hypermobile too IMHO.)

Wow, I’ve actually worked up an appetite writing this. I’m gonna go eat my rations for dinner and call it a night. At least I got something done while all the fireworks were going on – outside this time. 😉

Happy US Fourth of July,

Jandroid 3.141592658

 

 

 

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Anxiety and EDS

graphic of a brain made up of words relating to anxiety

The anxiety driven brain

I’m writing this post while listening to the replay of The Anxiety Summit produced by Food and Mood Gal Trudy Scott this week (June 16, 2016).

And I am not surprised to find myself falling down yet another rabbit-hole, with yet more rabbit-holes attached! (Are you?)

And unfortunately, I must say I’m finding anxiety, whether generalized or high and or episodic (panic attacks) to all be quite commonly comorbid with Ehlers-Danlos Syndrome curiously enough. (Funny, it’s awfully comorbid with autism spectrum disorders too – which are also highly comorbid with EDS. Hmm. Sensing a theme I trust?)

And just like with all of our many comorbidities and issues, anxiety can have more than one driver, and thus there are of course multiple solutions. And, no surprise, we can have (a la Hickam’s Dictum) more than one driver in the same person! And especially in Ehlers-Danlos patients. (I like to say we put the “syn” in Syndrome, smile.)

Thing is, I thought I knew much of what was driving anxiety in us before I listened to the summit. Now I feel like I know much more but still have more to learn about what drives it since listening. And there are multiple potential drivers, of course – because, EDS, smile. (Complexity is a given with us.) I will undoubtedly miss a few even in this post. And like all my posts, it’s merely a 60,000 foot (high level) overview. I could easily write a whole book on this topic alone!

But, and this is the exciting part, there is a lot we can do to help overcome our anxiety!

How so?

Well, as I’ve written before, there are often both biomechanical (X) and bio-chemical (Y) drivers of many of our issues when suffering from a connective tissue disorder. Especially if you have signs of comorbid Mast Cell Activation Disease of any kind. Think “extra” allergies and sensitivities allergists can’t easily test for, including to chemicals and vibration among myriad other things including pain and unfortunately stress.

Sure enough, as I wrote in my Depression and EDS post  where I diverged and addressed anxiety a bit also as it’s so rampant and comorbid with depression in us, we show signs of both types of drivers (X and Y).

On the biomechanical (X) side, hypermobility has been associated with larger amygdalae (2012), which is the seat of emotions and directs our most primal “fight or flight” responses – often long before we can even put our fears into words. (The amygdala is one of the oldest parts of the brain from an evolutionary standpoint, that is, our most “animal” part, aka our “reptile brain”.)

No surprise, this can lead to a higher general baseline of anxiety in those enjoying this condition. Since it’s a constant (unchanging) usually, it’s not likely to vary much from day to day, and will keep our fear response ratcheted up a bit at all times until and unless we recruit our frontal lobes to quell these signals. And yes, you can do so, I have with DBT.

Sure enough, another study found a four times greater probability of having anxiety in those with hypermobility from BJHS or HEDS (EDS III) than in controls. (2014) I’m sure we’ll continue to see more studies observing this comorbidity as it really is quite common.

I will say from personal experience that I have personally lived life “like a squirrel”, reacting extremely quickly (and often anxiously) to any and all stressors, whether warranted or not. I even spent a few years fearing I might die as I was falling asleep in my late 20’s – though I now think there were more bio-chemical (Y) drivers to that. (Hold that thought.)

Toss in some rather scary childhood experiences in my dysfunctional home (house fires, parents fighting, more) and it’s sort of a wonder I ever made it to and through school and work. (Thanking my well-recruited frontal lobe now ahh, among other things I’ll share in a bit.) Many other EDS patients report rocky childhoods also, though thankfully not all.

I can’t help wondering if this doesn’t lend to our proclivity to highly comorbid PTSD as well, whether from single events, or the complex flavor (“CPTSD“) I enjoyed from my rocky home life as a child. Again, I marvel that I ever got out of bed, much less out the door through it all now, but I did. And I’m sure glad! I know some who can’t/don’t always. Seriously.

The first study I mentioned from 2012 further noted that:

“Additionally, individuals with hypermobility often exhibit autonomic abnormalities, typically postural tachycardia syndrome, where there is enhanced cardiovascular reactivity and a phenomenological overlap with anxiety disorders.3 “

Uhm ya think? I can’t imagine why sudden blood pressure drops and hypoperfusion lending to suddenly feeling dizzy and lightheaded, tachycardic and weak would make anybody anxious, no, not at all. (Insert sarcasm.) Combined with early signs of mild to more severe anaphylaxis from our commonly comorbid Mast Cell Activation Diseases (think “extra” or “hidden” allergies you can’t easily test for) and uhm yeah, I think we have a right to be a little anxious – it would be semi-unavoidable when you no longer feel in control of your body I’d say.

Seriously, I’ve lost count of the number of patients in my support groups who complain of going in to the ER hoping to get Benadryl and or saline or Epi to help manage their reactions, or feeling like they’re having a heart attack possibly allergic-driven a la Kounis Syndrome in the absence of heart disease, only to be told they’re “just anxious” or having an anxiety attack. We are, but not for the psychological reasons they’re implying – for very real physiological ones they can’t see.

Uhm hello! I defy YOU not to feel a tad “anxious” in response to so much physiological change and the feeling you’re suddenly not in control of your body. And literally mild shock. (Hypovolemic and anaphylactoid, both.) If only the ERs would listen to us…

Almost all masto and MCAS patients report feeling very emotional in any number of ways (uncontrollable crying, irritability, sudden anger, sudden depression) during their anaphylactic episodes. And this includes the most “experienced” patients who have managed their ana with and without epi for years. I’m guessing this might be from likely histadelia (high histamine levels) at the onset of our reactions. Many report Benadryl helping, though not all. (Nothing ever works the same for everyone ever.)

This article linked mast cells to anxiety-like behavior back in 2008. And this one from 2012 further discusses their role (along with micro-glia – the brain’s immune cells) in neuro-inflammation which is highly implicated in neurodegenerative diseases and mixed organic brain syndrome which has also been linked to mast cell activation since 1986.

I myself experience such a mood swing at the start of my (blessedly) mild reactions, and I can’t stand it – I feel like Jekyll and Hyde and the Anti-Jan comes out. Defo no one I want to be! I’ve started to socially isolate a bit more because of it, sadly. (I am doing better however, as I’m less triggered by scents and foods while “out” with friends.)

So reducing or eliminating triggers and treating your MCAD and allergies may well help.

Then toss in sensory processing disorder, leaving some of us extremely sensitive to sight, sound or touch (though some are “hypo” sensitive alternatively and can ignore this bit), and this can increase your sensory defensive behavior and anxiety in a lot of patients, autistic or not.

I now realize why I’ve never liked going out much… so over-stimulating! I was just forced to do it and ignore all my wants/needs, so I learned to “get along”. But my SPD is all a bit worse post EDS onset “storm” of 2012. Pretty sure I enjoyed some cranial-cervicle settling that year, and while somewhat improved, I think my poor occipital lobe still feels a bit squished, especially during my MCAS reactions which raise my Cerebral Spinal Fluid pressure.

I’ve also just learned about several other potential nutritional and biochemical drivers of anxiety and depression in the Anxiety Summit, and will not do them justice here. I strongly urge all to find and follow Trudy Scott and many of her colleagues to learn more.

These can included low GABA, low tryptophan, low serotonin, low folate and copper imbalances, among other things including pyroluria. And you may well have more than one issue going on needing correcting a la Hickam’s Dictum. That said, I’m hearing of some truly stunning results and turn arounds from folks like Dr. Walsh at the Walsh Research Institute.

~Quick Update Fri 6/17/16: I just got to hear Trudy’s closing talk during her extended replay today including her thoughts on EDS and anxiety and just learned that many people are noticing a high rate of comorbidity of pyroluria and EDS and anxiety – gee, no surprise! Check out her pyroluria questionnaire here to see if you might have it, and know that it’s easily treated through zinc and B6 supplementation. (Please work with your doctors before supplementing to beware of interactions and always start really low and slow to avoid overdosing reactions.) ~

And gut dysbiosis can lend to some of the above imbalances and anxiety also, as we need good bugs to help fully digest our foods, and a bad biome can lend to poor digestion and leaky gut, along with gluten and dairy lending to same in many of us. Leaky gut, allowing over-sized molecules that need further digesting to pass through the gut wall prematurely/too easily then leads to systemic inflammation, including neuro-inflammation as the body reacts to abnormal substances in the blood stream. (This exacerbates MCAS yes.)

No surprise neuro-inflammation is being found to drive a lot of mood and behavioral changes (loss of speech, mood swings, brain fog, memory loss, more) as I already described a bit in my Depression post.

And then methylation cycle defects (of which MTHFR is just the best known) and poor methylation are also found to contribute. MTHFR defects are said to run in 40% of the population, so there’s a pretty good chance many of us have these defects. Though no, they are not 1:1 – I’ve already heard from a couple of patients online that they are neg for both forms but still have EDS – though they are in the minority for sure.

Maybe just those with MTHFR and other methylation cycle defects also show signs of autism? Or perhaps are the most clinical? Food for thought… I’m convinced there are multiple drivers of autism spectrum disorders as I shared here, much like there are likely multiple drivers of Hypermobile type EDS yet to be uncovered.

I would love to see a study correlating MTHFR and other methylation cycle defects with autism and anxiety some day. As well as a study correlating hypermobility and autism some day. (They’ve already correlated hypermobility and anxiety as I shared at the start of this post.) Among many other studies, smile. Perhaps the RCCX Hypothesis will end up getting validated and explaining a large chunk of what troubles us and drives our anxiety and over-active stress response.

Anyway, I am highly encouraged by the various success and “recovery” stories I heard on the Anxiety Summit this week from Trudy and others once they found their individual causes and imbalances and made the appropriate life style and dietary changes. Some don’t even need any medication at all now! How awesome is that? (Please do NOT stop taking any medication ever without your doctor’s approval, especially SSRI’s which require very slow, careful stepping down, among other medications.)

Along with the afore-mentioned drivers all with readily available solutions once they are uncovered, I feel there’s a lot of hope for those suffering from anxiety beyond just standard prescription medications (usually benzodiazapines) which seem to have a lot of harsh side effects over time. Even if by nothing else than by knowing that you’re not losing your mind, just your body, and there are very real physiological drivers (and solutions) of same.

And yes, many are (and have been) benefiting from increasingly legal CBD and medical marijuana for same as well. (Not all, and not all weed is the same – be choosy and buy from a reputable source and listen to your body – some can have a reaction to it still.) I personally can’t smoke – my lungs react to smoke – but I’ve found some CBD oil to be as effective as valium for me when I can get it. (It definitely helps me to sleep!) And I’ve personally witnessed it to control and calm seizures in a young patient I met at an EDS conference in 2013. (Not to mention easing pain too for some – bonus.)

Of course, work with your doctors and practitioners on all of the above – take all solutions low and slow to start, always and try to wait at least 3 days to a week before adding another item so you can differentiate what causes reactions if any.

Hang in there, keep breathing in long slow and deep, in through the nose, out through the mouth. Try meditation or yoga, “tapping” and HeartMath I just learned about also from the Summit today and acupuncture and Reiki. Along with all the individual dietary and lifestyle changes that are best for you including hopefully some exercise if able.

And some of you may benefit from dialectical behavioral therapy (DBT) or cognitive behavioral therapy (CBT) to help recruit your frontal lobes and override your amygdalas a bit more too. I’m now convinced from personal experience we can overcome a lot of our neurology and other anxiety drivers.

You’ve made it this far. So far your record for showing up every day is 100%. I’m betting you can keep it going a while longer. I hope the above helps you to manage a little better and provides a shred of hope.

To your health,

Jan 6/16/16

 

 

 

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Heads up change is coming May 2016

HoldUpLightBulbUpdate February 7, 2017: Via The Ehlers-Danlos Society (aka “The EDS”) on Facebook the full new EDS nosology will be published on March 15, 2017. Meanwhile, some preliminary documents have been shared ahead of time, including one that talks about the new “framework” for recognizing and diagnosing the most common, hypermobile form of EDS.

So, lots will be changing, and thanks for your patience as I slowly get around to updating everything based on the information as it comes out. And follow me on Twitter and Facebook for the latest always. (See links to the right.) Thanks!

February 18, 2017: The EDS just published an FAQ about the pending new EDS Nosology still coming March 15th, 2017. Patience grasshopper! Patience…

Original post from 2016:

Heads up caveat May 13, 2016: I expect a good portion of the educational information I provide on several of my pages here to change after the results of the discussions of all forms of Ehlers-Danlos Syndrome at the 2016 International
EDS Symposium in NYC May 3-6, 2016 finally come out.

I’m waiting on tenterhooks with
everyone else at the moment, I’ll update this as soon as I know
anything, I promise, I was not able to attend.

Please also note that the former leading US based Ehlers-Danlos National Foundation (formed in the 1980’s I believe) has now partnered with a sister organization (or members of one anyway) in the UK in 2015 to form the new International Ehlers-Danlos Society, or “EDS” in 2016 and the EDNF as we formerly knew it (formerly at http://ednf.org)  no longer exists. Yes, some of my links will now be broken accordingly. Please gently apprise me of them at info@ohtwist.com or in the comments here or bear with me as I slowly smoke them out.

I am particularly keen to hear the Symposium’s take on what constitutes
the most common form of Ehlers-Danlos by far, hypermobile type Ehlers-Danlos
Syndrome or “hEDS”, formerly called EDS III (3), and often
under-diagnosed elsewhere and in the past as Fibromyalgia, HMS, JHS, and BJHS
which may all well indeed be variations on the same theme per
leading experts since 2009. And equally importantly: how they now suggest diagnosing it.

Editor’s note May 25, 2016: I just got wind that they may have indeed carved out several new SNPs, but these still only account for the minority of patients who exhibit the grossest signs. Here’s reference to a few of them here.

I most dearly hope they are starting to recognize non-bendy patients at the very least somehow and will hopefully ditch or at least rework and rename the overused and highly misleading Beighton 9 pt hypermobility score, since so few pass it yet suffer as badly or worse than those who do. (February 2017: Alas, they chose to ditch the BRIGHTON criteria, with an R and retain the Beighton with an “E” and even increase it one point, sigh, but… at least this will reduce confusion! Stay tuned!)

For newer readers, hypermobile type EDS or “hEDS” is the most common of the soon to be formerly 6 main types we’ve spoken of for almost 20 years now and comprises the vast majority of EDS cases to date , but yet is the most poorly recognized for
reasons I go into in depth elsewhere. It is also just the “catch-all” bin for anyone who doesn’t match the currently known more easily diagnosed rare forms, which are much more distinct in presentation (phenotype).

Thus, some people with this label may well have their very own rare form but this just hasn’t yet been discovered. This is likely the case for poor Stryder here.

At this time (May 2016), hEDS can only be diagnosed clinically
by elimination of all other known possible forms and related
heritable connective tissue disorders (HDCTs) like Marfan Syndrome, Loeys-Dietz or OI etc. (when or if suspected), through careful thorough physical examination and extensive patient and family medical history when available.

This is why I generally recommend seeing a clinical geneticist for diagnosis if possible – they are the most informed on all of these, though technically any doctor can and may diagnose EDS who is willing.

Thus hEDS is a completely subjective diagnosis much like Fibromyalgia which is
often diagnosed in its stead (and /or found comorbid depending
on whom you ask and what definition you’re using for it), and thus
is highly variable in its application from doctor to doctor, even among so-called trained geneticists. Doctors are human too, after all, and quite.

As most of you know, it is my considered and widely expressed opinion that most
doctors have only been told about or remember the grossest
signs of the rarest forms of Ehlers-Danlos Syndrome to date, i.e, the low-
hanging diagnostic fruit if you will, lending to this being so poorly
recognized and rarely diagnosed in their defense. They’re mostly looking for stretchy skin, super bendiness and extreme fragility.

But I find many fellow patients just as guilty of the same limited view and thinking, especially if they are very bendy at all – they tend to assume everyone else must be and project themselves onto their fellow patients, and fail to see variations different from themselves and unwittingly invalidate or dismiss many fellow sufferers.

I’ve personally experienced this myself a lot in the last 4  years, and boy are we a stubborn hard headed bunch who aren’t easily willing to change our minds on the whole! ADD and OCD anyone? Literal black & white thinking? Just a touch? Smile.

This is why I’m writing, to help open everyone’s eyes further and suspect it (whatever it turns out to be) much more often.

I’ll finish this lengthy caveat by adding that Dr.
Sharon Meglathery’s new RCCX hypothesis proposed February 2016 may
well explain why we have not found a single major genetic
defect or SNP (single nucleotide polymorphism) that our often
overly B&W brains like to latch onto to explain the majority of
hypermobile type EDS cases. (Again, not all, sigh. Think grey!)

I don’t count the one very rare AR Tenascin-X haploinsufficiency
subset – those folks don’t have to wonder much and are pretty
easily diagnosed like the rest of the more rare and easy to
spot/bendier forms of EDS. Nor the new SNP found in the Belgian family in 2015 either. These both only account for less than a couple of hundred people in the world total, not many!

But further, the RCCX hypothesis may explain why not all are bendy, and yet we all come with so many additional issues and comorbidities.

Not only might there be multiple SNPs we’re still waiting to
characterize on the TNXB gene which may explain the
variability in hypermobile presentation we see once enlightened
enough to look for less bendy and stiff patients in addition to the grossly flexible ones, but some may not have any genetic collagen defect to speak of at all.

Instead, they may have issues with their extra cellular matrix (where collagen
is formed), and not all to the same degree, if any. Or are related to someone who does in a more obvious fashion. Yet they suffer variations on the chronic constellation of seemingly unrelated allergic,  immune, psychiatric and other issues we find so commonly comorbid.

Further, some of us experience changes in our levels of hypermobility over time as I did. Going from extremely bendy like these ladies as a child – I could have been related – to quite stiff in my 40’s when I finally fell apart and got diagnosed. I’m pretty sure I would have been diagnosed with “just” Benign Joint Hypermobility Syndrome in the past.

But I most certainly did not “catch” my hEDS in 2012, it just suddenly severely onset or advanced for as yet unknown reasons. I have my strong suspicions now involving accumulated stress and progesterone based on the RCCX hypothesis. (Many experience this after traumas are severe illnesses like a flu or mono.)

In any case, I trust you are starting to get off the bendy bandwagon with me so I can stop pounding this drum. Again, I’m just asking everyone to be dialectic and allow for more possibilities than perhaps you have either seen or heard of to date – even from so called leading experts. Don’t believe any and everything you read without question – take all with a grain of salt (or more).

And be ready for change, as we continue to learn more and our understanding of the condition evolves as well it should. It should with everything, or we are failing as a species with a supposedly higher intellect IMHO!

Change can be good – it’s just often uncomfortable for many, I know. And I say this just as I’ve started to see the current party line (including not all being bendy) finally slowly become adopted around the world. I expect the upcoming changes (whatever they are) to take a fair amount of time to percolate out accordingly too. I may not even agree with all of them! TBD.

So just please be aware that all of what you are about to read (or have read) elsewhere on my site may be subject to great change in the near future; keep an open mind, and
allow for multiple possibilities as we proceed in the future. (Especially my About EDS and Diagnosing EDS pages.)

I look forward to providing clarity as soon as I have some
myself. Thanks for your patience and reading!

Jan(droid) 3.0 May 13, 2016

Update February 2017:

 

Some preliminary articles are leaking out ahead of the full new formal EDS nosology which is now scheduled to be published in the American Journal of Medical Genetics March 15, 2017.  A cursory glance shows they are tightening up the criteria for the common hypermobile type “hEDS” mentioned above, and adding a category for those who are bendy and symptomatic, but not quite “clinical” enough (that is, are sub-clinical) called “Hypermobile Spectrum Disorders”, or HSDs, that will likely encompass all of those former old labels (BJHS, JHS and HMS).  They also seem to recognize many of us have fibromyalgia as well now. (Finally!)

So… my current info still stands – for now. But I’m expecting to change a good bit shortly after that article comes out. The Ehlers-Danlos Society (the EDS) has promised to make it available for free up on their website as soon as they can. So please be patient, sit on your hands, and let all of us good volunteers and educators have a chance to get it out to you. And…  take up any issues you have with it with the EDS or the working groups, not me! (I’m just the messenger, right? Don’t shoot! lol.)

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The Chronic Constellation

elephantClipFasten your seatbelts and settle in with a snack again, you’re in for another long ride, smile. (I’ll try not to make it too bumpy!)

Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio of issues we find comorbid in the Ehlers-Danlos community of any form of EDS (or the newly recognized subclinical diagnosis of Hypermobility Spectrum Disorders since March 2017) plus MCAD in any form (either Mastocytosis or Mast Cell Activation Syndrome) and finally POTS, which is a subset of Dysautonomia which all have to some degree. Dysautonomia that is, not all have POTS specifically.

Some will have the Hyperadrenergic variant of POTS aka “HyperPOTS” and others will have other forms of Orthostatic Intolerance, and all other variations of dysautonomia you can describe. (Raynaud’s phenomenon or syndrome, livedo reticularis, NMH, more.)

I personally consider most POTS and all manner of “Dys” to be the likely “love-child” of having weak connective tissues lending to flaccid veins & weak valves (lending to blood pooling in the lower extremeties) and stretchy bladders that help you pee out more than you take in thus lowering blood volume, and the effect of Mast Cell mediators rampant in our systems which lends to vaso-dilation and lowers blood volume further from third spacing and angioedema. Among other things.

Toss in a little neuropathic or neurogenic trouble from cranio-cervical settling and instability impinging our brainstems and other bits of our neurology (impinged vagus nerve making you vomit, anyone?), and of course we struggle to regulate our breathing, heart rate, blood pressure, temperature, motility and more.

I rarely meet anyone who doesn’t show signs of either of the other two “legs” of The Trifecta once you drill down far enough and acquaint them with the other sides of the triangle. I know there’s a small camp that believe some POTS and dysautonomia is primary and autoimmune driven, and that may well be in a small subset. But not in the majority by far with EDS in my unscientific observation.

Most just haven’t recognized enough other signs of EDS and /or MCAD yet to realize what’s really driving the dysatuonomia. And yes, autoimmune diseases are commonly comorbid in us also, but hold that thought!

I often find the reverse to be true as well – people who identify as “just” having either Mastocytosis or MCAS (forms of MCAD) will often complain of all the signs and issues that go with both mild EDS of some kind or the new (since 2017) Hypermobility Spectrum Disorders, plus mild POTS or dysautonomia. But if they aren’t yet aware they won’t recognize those other two players.

And finally many EDS and HSD patients later find out the hard way they also have a form of MCAD and also various forms of dysautonomia once they get into the support groups too if they haven’t been told already.

The body can only express itself in so many ways with weak connective tissue.  So these are apt to be common experiences and most of the milder forms have been quite well “normalized” as fibromyalgia or just being a bit weaker, quicker to fatigue or low energy. Many are diagnosed with Chronic Fatigue Syndrome, a misdiagnosis in my opinion for many. (Not all.) And my favorite: “just depression“, especially if you’re female. Like that’s a minor issue either, sigh.

No, this is no cake walk. And managing The Trifecta alone is a major undertaking for most who have become clinical enough to be diagnosed with any part of it. It is downright show stopping for too many, especially those with increased cranio-cervical instability lending to the issues. My heart goes out to all of you!

I only had a bit of CNS Apnea making me forget to breathe from mine at my worst thankfully, knock wood quick! I do still get brain juice headaches and have increasing photophobia and hyperacusia but it’s more manageable than many.

The Elephant Project has been discussing this for years over on Yahoo, among other things. (I can’t keep up with all the forums currently though I try my best.) There are some really smart people there circling the same hill or drain many of us have, trying to find an answer to why we enjoy so much trouble.

But wait, there’s more! You didn’t seriously think that was all I was going to share of something I’m calling “The Chronic Constellation” did you? Did you?? Ah my dear Alice, we have not only not hit the bottom of our rabbit-hole yet, but it has more rabbit-holes attached to explore, and a whole feral pack of Cheshire Cats to deal with!

This next bit is even more poorly correlated to date, so it comes as more of a surprise to my followers than the above Trifecta. But every single person in the room at the support group meetings I lead ends up owning up to experiencing or having a family member at the very least with one or more parts of this Second Trifecta no one speaks of very often yet (hold that thought too):

Autism Spectrum

Everyone I meet with EDS seems to either be on or at least related or even married to someone on the autism spectrum. I’m including the former diagnosis of Asperger’s which I’m well aware the DSM-V did away with in the US in 2013. Most Aspies still self-identify as Aspie though, and likely will continue. I now consider myself a very likely Hidden Aspie, or so-called “autistic cousin” and see many signs in my late family in 20/20 hindsight though none of us ever got suspected or diagnosed.

And I only suspected myself after 3 different people in my support groups asked me if I was Aspie first mind you. It’s increasingly obvious to me the more I learn about it though. Pardon, my Aspie slip is showing!

Conversely, since befriending several Aspies and autistics and autistic cousins in the local Aspie support groups this past year, I’ve found the reverse to be true as well: almost all showed signs of bendiness (hypermobility) to varying degrees, and complained of many of the same health issues I’ve had all my life including heavy allergies or at least sensitivities among other things. (Autoimmune diseases, fibro, IBS, more.)

This is turning into one heck of a coincidence in my book and I’m dying to see a study correlating hypermobility and autism. Dr. Theoharis Theoharides has correlated autism with the highly comorbid Mast Cell Actviation Diseases since 2013 though meanwhile.

I also find the following neuro-divergent and psychiatric constellation really common in our group as well, on the spectrum or not: anxiety, depressive disorders, ADD/ADHD, OCD, SPD, PTSD, mixed mood disorders, Bipolar, Borderline Personality Disorder, Narcissistic Personality Disorder and any and all variations thereupon you can find. Dual diagnosis anyone? Try “Hexa diagnosis” in some. And no, I’m not kidding, they’ve voluntarily shared their diagnoses with me in some cases even without my asking.

(I seem to make people feel safe to share such things. Maybe because I’m so honest about my own issues/shortcomings/family.)

We really must stop trying so hard to classify people into single boxes with our short sighted views; further, I’ve personally observed people’s conditions and mental health and neurology to change over time – and diagnoses to change or resolve, frankly. Yes I speak from experience in at least one case.

Of course, we are often quite loathe to admit to any of this not only from the social stigma all too sadly attached to having mental illness or neurodivergence of any kind despite how common it truly is, but because way too many of our doctors proceed to write off all of our very real pain and physiological issues to “just anxiety” or depression, sadly. I’m now deeply convinced the hEDS population is the reason I keep hearing “depression causes pain”. It doesn’t. It comes with a lot of pain folks! Wake up and validate our pain!

Primary Immunodeficiency (aka CVID)

I had never heard of Common Variable Immune Deficiency until a fellow zebra (EDS patient) got diagnosed with it in my local support group in 2012 after I suspected her of having MCAS. The doctor she saw did not recognize her MCAS (he only recognizes Masto yet) but did suspect her of CVID. Upon investigating it, I realized this was also a very common presentation in our large online support groups.

Further, I recognized mild signs of it in my own family once again. I myself got sick a lot as a child, and with strange odd bugs that no one else in school got like croupe (but somehow not Chicken Pox until college – go figure!) My dad was discharged early from the army during the Korean war after ending up in a medical coma when he succumbed to scarlet fever and either measles or mumps – I forget which, and maybe both. (They gave him the option of early honorable medical discharge once he recovered and he took it.)

I found myself prone to lots of lung bugs and infections in later years catching anything that had ever passed through any new house or office I entered. I did manage to shake off all my bugs in a decent amount of time. But I do still catch any virus that even looks at me and have a chronic case of blepharitis (eyelid infection) I still can’t shake even with bacterial ointment. My 23andMe data shows my IgE and IgA systems to be thrashed according to one analyst, though I don’t count that as a diagnosis.

I’ve seen many in the group end up on either Meyer’s cocktails or IVIG infusions. And every time I describe this in our support group meetings, others immediately own up to either being diagnosed with it, or related to someone who should be diagnosed with it if not already from the description. Oh that’s why we’re sick so much and so often! Boost those immune systems, everyone and keep your Vitamin D up!

Autoimmune disease of any and all kinds. (Seriously.) 

No, Ehlers-Danlos Syndrome itself is not autoimmune. But, I’m finding it is really commonly comorbid in people with any and all forms of autoimmune diseases. Or vice-versa, if you prefer. No, not 1 to 1 yet, but at an anecdotally awfully high rate. Yes, this was a shock to me! I kept thinking “oh those poor souls who happen to have both issues”, until I became one of the very few I found who don’t yet besides some osteo-arthritis which I’m not counting as it’s sort of de facto in us.

I do have the factor (HLA-B27) for Ankylosing Spondylitis, a form of autoimmune spinal arthritis which runs in my family, but it has not developed yet in me knock wood as far as I know. My dad called it “Marie-Strumpell Disease” and spoke of receiving deep x-ray therapy for it back in the day – no kidding! My parents were born in the 1920’s and were 40 years old when I hatched, so they’re the same age as many of my colleagues’ grandparents, yes. Whence the very outdated disease reference – and treatment – no one but me has heard of! Story of my life.

But I have been checked for it more than once through the years and so far I am negative for it, thank heavens. I of course suspected AS first based on family history and my early onset lower back pain before I ever knew about EDS. Trust me, I’m happy to be negative – I have plenty else on my plate to manage already! That said, I now really appreciate my elderly aunt Kathleen’s incredible strength and grace making it to 92 (so far) with all of the above, albeit not all diagnosed. She did have her AS diagnosed, along with spinal stenosis, herniated discs, sciatica and more, just not EDS.

That said, I’ve been following some of the best functional medicine doctors and health coaches on the web the last three years (Carnahan, Myers, Hyman, Lynch, Yasko, Trudy Scott, Mike Mutzel, more), and am increasingly convinced that all the autoimmunity is the likely result of chronic inflammation the combo of a weakened immune system allowing chronic infection (CVID), and our over active mast cells which fire off much too easily and often. Like a war-weary veteran, our poor overworked immune systems start engaging in “friendly fire” if you will, firing off even when they don’t need to at the least provocation, and upon “self”.

Toss in some likely common leaky gut from weak epithelial tissues and dysbiosis from weak ileo-cecal valves and I got your autoimmunity right here. Avoid gluten folks!

That said, I’ve just recently learned that apparently autoimmune disease can then trigger mast cell activation in return, forming a sort of vicious cycle of inflammation. I’m still trying to wrap my brain around this but have a friend who can speak from first hand experience. Hey, I’m not an immunologist or any species of doctor or scientist, just a well-read somewhat smart and pedantic patient, so I’m doing my best here! I welcome sources for that in the comments if you can throw me some.

I usually share this slide at my meetings (sorry the top got trimmed a bit):

TheChronicConstellation

But wait there’s more.

What? Are you kidding me?? Are you just attention seeking and picking stuff out of a hat to list now Jan?? Aren’t two “trifectas” enough trouble for more than two lifetimes?

Oh how I wish that were true dear readers, trust me! No, you’re getting the fruits of a semi-photographic pattern-seeking (likely mildly Aspie) brain. Plus, if I were just picking disease out of a hat for attention, I’d be laying claim to having all of these things myself, and I’m not. But I personally know way too many patients who do have a majority if not even signs of all, poor souls. Or all occurring within their family at least. Seriously. It’s heartbreaking to watch, I promise. They all told me so at the support meetings!

And we’re all in many ginormous Facebook support groups together, plus some others are on Inspire, some with upwards of 20,000 members, so I have a large data sample to pull from – more than almost any doctor I know of who’s not also in the groups with me! 

All you doctors have to do is start checking your patient’s family histories more thoroughly – and you’ll see this pattern too, I promise. I’ll even wager my currency of choice: dark chocolate, smile.

Not only are the above two trifectas common, but mitochondrial diseases and disorders are also quite common in us too, no kidding!

As well as any and all forms of endocrine imbalance or variances, especially thyroid (high or low), but especially low, and often autoimmune Hashimoto’s Thyroiditis. (No surprise!)

I honestly can’t make this stuff up folks – I wouldn’t have known where to begin. I’m just reporting from the field as it were.

Some functional medicine doctors think Hashi’s may be driven by a cross-reactivity to gluten. Apparently our thyroid protein looks like gluten, which may look like bacteria coats to our immune system, sigh – hope it tastes as good as we autolyse ourselves! But whatever the reason, I’m sorry to say it is very common, as is its opposite: Graves disease, the autoimmune form of hyperthyroidism (overactive thyroid).

Ironically I just learned that hypothyroidism in pregnant moms and newborns may lend to autism by altering neurological development, no kidding! That could sure explain a subset of our group right there!  But I’m sure that’s not the only driver of autism. Nor of hypothyroidism. Nor do I think autism needs to be “prevented” nor cured to be clear. I’m just reporting on the health status of our families after meeting so many the last five years.

This is why I’m referring to this cluster for the moment as The Chronic Constellation. It’s also really late and I’m out of bright ideas and catchy names. This is not an official term – just a quick hook I thought of to hang it on, since it’s more than a Trifecta, and “Hexafecta” doesn’t quite roll off the tongue as well, nor cover it all. Plus, there’s even more to it.

But I’m stopping there, as I want to share that I’m not the only one to be observing this particular Constellation of chronic issues in an apparent familial pattern. It turns out those smart folks over at The Elephant Project and a fellow patient who also happens to be a doctor also noticed the same thing, and started drilling down and finding some possible genetic causes for this involving the RCCX complex! (First shared Monday February 15, 2016 in one of the Facebook MCAD support groups I’m in by Sharon Meglathery, MD as far as I know.)

This is brand new information, and not at all verified yet. Dr. Meglathery who is bravely putting it forth is wisely seeking scientific backup through as yet unfunded and unperformed research. (Not for lack of effort on her afflicted part.) But I think her hypothesis holds a lot of promise.

But if this observation and hypothesis holds up, we may have the answer finally to why we can’t find a single genetic collagen defect underlying the majority of cases of the most common form of Ehlers-Danlos, the Hypermobile Type. (Aka hEDS) And further, why some are not at all or not very bendy with it, despite having all the rest of the trouble above, thus lending to the new Hypermobility Spectrum Disorders newly recognized since March 2017.

But even if not, I feel strongly these people are pushing the ball down the field and the constellation we observe definitely holds for whatever reason. I’m not the only one seeing it anymore, and that makes me feel better! In fact, Dr. Meglathery’s RCCX hypothesis is getting great reception in the support groups so far – it fits so many of us!

So don’t take my word for it, but stay tuned. I’ll of course keep everyone posted on any new developments I learn as I learn them. Follow me on Facebook or Twitter for the latest information at at all times.

Jan (droid) 3.0

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Depression and EDS and MCAD

image of question mark on puzzle pieces

Finding answers?

I really need to include anxiety in this post as well, as the two – depression and anxiety – seem to go very hand-in-hand for a large number of us. No surprise, this is true for the commonly comorbid autism spectrum as well, coincidentally. Maybe we’re finally onto some of the underlying organic causes of our anxiety and depression, as I hope to share below. Fasten your seat-belts and settle in, it’s quite a ride.

I’ve seen every variation on a theme of depression, anxiety, bipolar, mixed mood disorders and personality disorders of every kind really quite commonly in our groups along with all variations of ADD and OCD, even if some don’t recognize it fully in themselves yet. (Especially Narcissistic Personality Disorder, who tend to not want to recognize anything in themselves but nitpick on others.)

But quite a few have been diagnosed and do, myself included. I suffered from seemingly intractable depression and mixed mood disorder (aka “dysthymia“) off and on for years – until recently! (So did my late parents in various forms, underlying their alcoholism.)

Now gee, why, when my body has fallen completely apart in the last few years starting at 45, I stopped being able to walk and dance freely and live in unending and often severe amounts of pain would I feel less depressed than I ever have before?

Yes, it’s partly because I finally have some answers for it and the validation that comes with that. This has been huge. (Finally, it’s not all in my head! I’m not “just depressed” or my fav: “just a woman”, heh.) But I assure you, that is not the whole picture. (Though it’s definitely not trivial!)

I most definitely did suffer from primary organic dysthymic depression in the past, but really don’t any more. And I now think I know why. The good news here, is that if you do suffer from depression or anxiety (including panic disorder) and EDS, you’re definitely not alone!

The even better news here is, there’s a lot more that you can do about it besides just taking SSRIs like Prozac! (If you benefit from Prozac etc., do not apologize or stop taking it. This is aimed at those who got little to no benefit from it and other SSRIs for reason I’ll be explaining below.) And some of these solutions are free or very low-cost (over-the-counter). How cool is that? I’ve never been more hopeful in my life – for all of us!

NB Do NOT, repeat not stop taking any medications, especially antidepressants without the advice and supervision of your doctor, no matter what you read here or anywhere else. Many antidepressants require very careful, supervised and SLOW stepping-down to come off safely, and, some of us will still need them, even with all the tips I’ll share below.

(Please listen to Dr. Kelly Brogan explain why here! Or read about some here too.)  Okay, ’nuff with the caveats! What have I learned that’s helped and how?

As I fell down the Ehlers-Danlos Syndrome rabbithole after my sudden disabling and upending onset “storm” or cascade in early 2012, I soon learned that hypermobility has been correlated with larger amygdalas, the emotional “fight or flight” seat of the brain. Gee, could this be why I’m more emotional on average and easily scared than some of my peers in general?

They also rightly noted in that study that comorbid dysautonomia can lend to anxiety also. And anecdotally most if not all of us are either on or related to someone on the autism spectrum where I’m finding anxiety truly quite rampant and sometimes show-stopping.

I soon learned about comorbid Mast Cell Activation Diseases (MCAD) of all kinds (Masto and MCAS) after @Mastocytosis followed me on Twitter in 2012 too, and realized most if not all of us seemed to share some form of this too. Boy has this explained another large portion of my life experiences – IBS, headaches, easy flushing, itching, hives, vomiting, bad reactions to anesthetics and iodine contrast dye and bees, the penicillin (mold-based) class of antibiotics, and much more. (Hold that thought. Yes, this looks a lot like – and may include – histamine intolerance.)

Turns out I’ve been going mildly anaphylactic all my life, but didn’t know it ! And had been getting dismissed as being “just sensitive”. Well! Now I know why! And suddenly I could start getting a handle on some of it by identifying and removing many food and other triggers, even as I found myself increasingly reactive as I entered peri-menopause. Turns out this is a common experience we find likely hormonally driven, and many women end up getting their MCAD (and/or EDS, especially Hypermobile type EDS) diagnosed around this time in their lives now, no surprise! Good news ladies: it gets better for most post menopause.

And what do you know, but anaphylaxis often includes a “sense of impending doom”. Uhm, gee, I don’t suppose this could possibly be driving any panic attacks by any chance now do you think? And no, I don’t just mean the highest level, Stage IV epi-pen requiring “ana” that is the only level most doctors, nurses and EMTs recognize currently, but some of the lower grades as well. What? You didn’t know anaphylaxis comes in grades? (Google “grades of anaphylaxis” and you’ll find more tables to choose from.)

Well join the rather large club who don’t.  Because it sure does, and I now realize I’ve been living in the lowest “Grade I” semi-permanently my whole life, with regular (almost daily) dips into Stage II and occasional dips into III with a rare taste of IV on occasion.

I’ve determined that I’m what we call a “lucky leaker”, meaning I don’t usually go into full shock quickly and hard like some of my less fortunate colleagues who we call “shockers” who have to epi a lot more often. My mast cells just “leak” some mediators, vs fully degranulating – usually.

So I experience all the same signs and symptoms of shockers, just much more slowly and thus more mildly on average, making it extremely hard to recognize as what most doctors consider “true” anaphylaxis, which is a faster reaction that lands you in Stage III – IV quickly, requiring medical attention and often the use of epinephrine. I can change this by increasing my stress and trigger loads, and or being stung by a bee, smile.

We all carry epi-pens or should, anyway, though I’ve been able to keep mine buried for years (knock wood quick). Some of my friends  epi daily – how they manage this both physically and financially I’ll never know, but they do because they have to.  I do find the calmer I remain, the better I fare, and my friends have found the same. But every body is different, and you do what you must to properly manage with your doctor’s guidance.

It soon became clear to me that the comorbid dysautonomia (including POTS) and all that it entails is likely the love-child of both weak connective tissues lending to poor circulation and venous tone from flaccid veins and weak valves, along with hypovolemia (decreased blood volume) from a combo of stretchy bladders that can overfill and make us pee too much out, and the effects of mast cell mediators driving vasodilation and third-spacing and frequent urination. Low BP and sudden drops, lightheaded or dizzy, anyone?

Keep your fluid intake up – but with sufficient electrolytes to make it stick. Many find plain water to just go right through us – try coconut or Smart Water (or make your own), instead.

I also just learned a majority of us show signs of low magnesium levels. This is true for virtually all Americans, where our soils have been too depleted by modern industrial ag techniques, no matter how healthy we eat. But for some reason this is even more true in Ehlers-Danlos patients. Possibly due to our weaker epithelial layers and likely leaky guts lending to malabsorption and malnutrition even in the “healthiest” of eaters among us. I just learned this can lend to our electrolyte imbalances which lends to fluid imbalance also. Get your magnesium up any way you can so you can keep hydrated!

I also always have to pee like a racehorse after a reaction (lowering my fluid levels further), which is just about every other day presently. I’m trying hard to reduce this, but so far no dice. It’s a bit like taking diuretics all the time unintentionally and needlessly. (I.e. against medical advice!) But all I’ve done is eat and drink and encounter scents, stress and vibration while living my normal life. Low blood volume and pressure, here we come.

Toss in some neurogenic trouble from often occult Chiari malformation and Cranio-Cervical Settling and Instability (CCI) from weak neck ligaments and saggy hind brains, and impinged vagus nerves and I think I’ve got your BP drops and tachycardia and (some) sudden vomiting and tachycardia explained now.  Uhm, I don’t see any reason at all to be anxious now do you? <sarcasm>.

And again, it’s not that you’re just scared or nervous about what’s going on, it’s that your body is literally having a physiologic reaction to physical stimuli (low blood volume, neuropathy, low BP, high histamine) that makes you feel like you’re anxious and can make you so, since you don’t seem to have control over it at times. Combine that with possibly less developed frontal lobes in some of us, and those oversized amygdalas and saggy hind brains lending to Sensory Processing Disorder, and of course we’re prone to catastrophic thinking, overwhelm and panic attacks! I defy you not to be in our case.

So along with baseline higher levels of anxiety on average,  we “enjoy” plenty of episodic anxiety attacks thanks to our (often milder) MCAD reactions that doctors rarely recognize for what they really are: mild (and sometimes more severe) anaphylaxis and hypovolemic shock on top of occasional true and serious connective tissue injury and dysautonomia from Ehlers-Danlos Syndrome. But no, we’re “just anxious” they all say. Sigh.

But I digress. Where does the depression come from you rightly ask? I’ll tell you. There is increasing evidence that much depression is driven by neuroinflammation, which Dr. Theoharis Theoharides has tied to mast cell activation in the brain. So what are mast cells?

Mast cells are part of our primary immune defense system, the “first-responders” in the body if you will to invaders like bacteria and viruses and… innocent peanut and other proteins (aka allergens or triggers) when our immune systems are dysregulated and over-reactive. They are a form of white blood cell born in our bone marrow, but are kicked out while young and undifferentiated.

They then quickly migrate out of the blood and into all of our external facing tissues: skin, lungs, GI tract lining, nose, ears. You should have very few/no mast cells in your blood on average, they don’t stay there. Talk to a hematologist if you do.

They contain granules filled with many “mediators” or chemicals and proteins they release when triggered to varying degrees. They also make some on the spot during reactions too.  But, and this is key: they also line our blood vessels, nerves and are even in the brain lining the hypothalamus! 

And guess what the hypothalamus drives? The pituitary-adrenal (HPA) axis! Uhm, hyperadrenergia anyone? Trouble falling and staying asleep? High arousal? Weepy? Moody? Check your histamine levels, you’re probably enjoying histadelia. I like to say I’m “Type A” for “Adrenergia” now.  Or was, I’m doing a little better since catching on and managing my reactions more.

Toss in any undermethylation driven by MTHFR and company which run in up to 40% of the population (or more), and it’s only amplified, whee. Bipolar anyone? Are you sure?? Maybe you’re just eating wrong for your body type, no kidding. Get enough dark green leafy veggies or some methylated B12 and you may be a whole new person.

“True” allergies involve the triggering of IgE receptors on our mast cells which an allergist can detect and test for. The IgE has a “memory” for a specific protein it has encountered before, and is primed to react swiftly and more severely, often leading to full medically recognized Stage III-IV anaphylaxis from full mast cell degranulation. Carry those epi-pens and use them as directed if needed folks!

So technically you can’t have a true allergic reaction (involving measurable IgE) the first time you encounter a food or trigger – it has to engage the secondary immune system and generate those IgE memory antibodies over hours and days that then stick to your mast cells waiting for any more peanut protein or grass pollen to come wafting along before they trip out. Now that second or third time, watch out! They’re primed and ready to go, and how!

But with MCAD, we still do not know the direct physiological triggering mechanism of the mast cell yet (i.e, what’s the receptor? how triggered?), but it can happen both the first time you encounter something, and respond to non-protein triggers like heat, cold, vibration, pressure, scents, sunlight and sounds. Yes, tricky! And understandably a bit hard for doctors and even our own families and friends to believe. (Why I don’t go out much anymore.)

And in a further plot to confuse, you can suddenly start reacting to something you’ve always been able to handle or consume your entire prior life for no apparent reason! Yes, crazymaking!! Check your stress levels, and monitor your hormones, these may be playing a role. I always wanted to be a detective, little did I know I’d have to play one every single day for myself one day. (Now what did I do/feel/eat/drink/experience to cause this latest reaction?)

Mastocytosis involves having too many mast cells usually in clusters or clumps throughout the body, sometimes on the skin (urticaria pigmentosa, TMEP) that are almost always also over active and make you sick like you’re constantly allergic but without having “true” allergies you can test for. (Allergists regularly call us crazy and kick us out of their offices.)

Mixed organic brain syndrome has been correlated with systemic mastoyctosis since 1986. Then we slowly started recognizing its sister disorder, the new diagnosis on the block: Mast Cell Activation Syndrome, which you diagnose in the patient who is symptomatic like they have mastocytosis, but negative for signs of excess mast cells. (Ours are just “Type A” over-achievers, sigh.) But the net effect is still the same: you may still enjoy signs of mixed organic brain syndrome just the same. It’s just harder to diagnose the underlying disease driving this!

Though they appear to be catching on now. The Low Histamine Chef thankfully noticed this back in 2014 also as she discovered the connections Dr. Theoharides was making. Toss in the continued observations being made about the prevalence of psychiatric disorders in the hypermobile patient and is it any wonder we seem to enjoy just about every form of mood and psychiatric disorder known?

And The Sessions with Sean Croxton just shared a fantastic in depth interview with the brilliant Kelly Brogan, MD who has a book coming out about this very thing soon (next week, as I write this update March 11, 2016.)

But stop the presses! That means we can do something about it! In the case of our mast cells, we can both avoid known triggers (once identified, and this can be really tricky and take a bit of sleuthing and lots of patience and discipline), and reduce our reaction levels through the use of mast cell stabilizers like quercetin and luteolin and cromolyn sodium. And we can ease the histamine effects with antihistamines. (Those of you with true masto may need to address your proliferation with the help of a hematologist/oncologist.) And lowering stress which may be one of the biggest triggers of all as per The RCCX Theory by Sharon Meglathery shared February 2016.

But what about my neurology – aka funky brain shape – you well ask? Aren’t I just born this way and stuck with it? Not at all! It can take a while, but just as we can shape our bodies with “body building” exercises, so too can we re-shape our brains to a great degree with intellectual exercises and brain training, no kidding!

Dr. Robert Melillo even thinks all ADD stems from imbalanced brains, where one side is larger than the other, or the two sides aren’t “talking” to each other well. You can read all about this – and his great therapeutic solutions for it in his book Disconnected Kids. (I’m increasingly albeit unscientifically convinced that hypermobility lends to these imbalanced brain shapes and neurologies – whence all the SPD, OCD, ADD etc. we “enjoy”. But we need to study this!)

Many including myself will benefit from various forms of Cognitive Behavioral Therapy, including Dialectical Behavioral Therapy in particular. Does this take work? Sure. But aren’t you worth it? I can tell you it did a lot for me, even prior to changing my diet and lowering my inflammation levels in recent years. As well as from “tapping”, aka Emotional Freedom Technique as described here, which can help with all kinds of issues including anxiety, pain and focus.

And everyone can benefit from the simple practices of mindfulness and meditation, even for just a short duration, as little as 15 minutes a day. Just put away or turn off all your screens and electronics so you are not distracted, and settle your focus and attention on your self, your surroundings and your internal world. Observe and notice the world around and inside of you. Observe your breath. Even just breathing in through your nose and out through your mouth is shown to calm anxiety. Further, you cannot hyperventilate that way: it’s physically impossible.

The Low Histamine Chef Yasmina Ykelenstam has overcome much of her anaphylaxis through mindfulness practice and yoga alone, along with her nutrient dense diet.

I never did better than since going on a full reverse elimination diet in 2013 (I essentially did the GAPS diet, going down to chicken broth for 3 days before slowly adding foods back in one at a time only one every 3 days). This immediately and dramatically lowered my unrecognized (by me!) inflammation levels. My pain lowered, sleep improved, brain fog cleared, strength improved, IBS reduced. While I wasn’t able to sustain this indefinitely, I’ve remained on a diet I find best for me: grain-free high fat and protein, with plenty of kale/apple/kiwi juice when I can make it. (I’m lucky, I can eat kale.)

But every body is different, and you need to find the diet that works for your body and metabolic type ultimately. It may be different than mine. But just doing this alone can greatly reduce your pain and inflammation and neuroinflammation enough that you may calm many of your reactions and resulting symptoms and issues.

The large MCAD groups on Facebook are full of stories of kids (and adults) regaining speech on quercetin and luteolin. Conversely, many complain of losing their speech (apraxia) during reactions. No surprise, Dr. Theoharides has linked MCAD to autism as of 2015.

The groups are also full of stories of wild mood swings and melt downs at the start of anaphylactic reactions. Many seem to calm upon taking some Benadryl. I’m finally recognizing this to be an early sign of anaphylaxis in myself. It only took me 48 years! But better late than never. I’m not losing my mind – just my body!

And maybe you are too. I hope this has helped give you some hope for recovering from some mood and depressive disorders as well as easing anxiety attacks and anaphylaxis. Yes, what a long strange trip it’s been. But, at least I’m finally getting some answers, and now hopefully you are too! And again, you know that you’re not alone in this mental health journey. To those who may be judging us, know that MCAS is much more common than you think – possibly in as high as 14% or more of the population per some recent papers I’ve read. (I need to dig up that source still, but it’s late so you’ll have to wait just now.)

Let me know you’re experiences with all of the above in the comments. I think we’re starting to circle the same drain or hill as the autism community in terms of recovery answers, personally. I’m willing to bet we’ll be correlating hypermobility and autism all too soon, along with MCAD.

To your health,

Jan(droid) 3.0 2016

 

 

 

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Trust – and heal – your gut!

image of a dessert spoon on wood

A precious spoon!

You may have noticed I don’t give much dietary advice here. In fact, to this point, I’ve given virtually none.

And this is for a very good reason: just like medications and just about everything else with Ehlers-Danlos Syndrome with a dose of Mast Cell Activation Disorder on the side (any flavor) among plenty of other comorbidities (leaky gut, IBS, more): it’s as individual as fingerprints.

The only advice I will give everyone, with EDS or not is to eat as whole, organic and unprocessed of foods as possible. Or as Sean Croxton shared once, “JERF”: Just Eat Real Food!

This is good for everyone naturally. But it’s exceptionally good for us, as we seem to be even more sensitive to all the additives and complex ingredient lists in processed and GMO foods. And thanks to likely common leaky gut and our trippy mast cells, we’re going to react to a lot more things than the average bear, even if we don’t realize it yet. (This can also lead to secondary autoimmune diseases which are often diagnosed first.)

Yes, I know this is hard, nay, seriously labor intenstive. Trust me, this takes the bulk of my own personal time, cooking and cleaning whole foods almost without exception. Yes, it was uber painful (and still is) when I started to do so in 2013. (I actually did the GAPS diet for 3 months, then modified it to a low-trigger paleo version that’s sustainable for me just barely out of my wheelchair.)

And I live alone – no kitchen elves or help anywhere! (I keep looking.)

But I’ve never done better than since I did adopt this practice, even though it’s seriously exhausting at times. The lower histamine levels and improved nutrition it gives me have only helped, and kept me out of the hospital and away from my epi-pen all this time, yay. (I can still go down if enough other triggers pile on now: scents, stress, heat, cold, vibration, meds. But I react a lot more mildly than those who don’t watch their diets.)

Further, I hesitate to give anyone any “safe” lists of foods: thanks to our usually over active mast cells, my “safe” food may just trigger you and vice-versa. Conversely I won’t give out any lists of foods to “avoid” (other than processed foods and sugar, period), because we all need to keep our nutrition up as much as possible, and what’s bad for me, may not trigger or cause you any trouble at all.

The only exception I might make would be to suggest eating “low histamine” foods. But even this is a red herring, since technically any food that triggers YOUR mast cells is high histamine, since that’s what our mast cells release when activated. (Quickly or slowly.) That said, many find avoiding ground meats, fish and leftover foods to help lower their overall reactions, but again, listen to your body and eat what works best for you (causes the fewest reactions/lowest inflammation) regardless of any “lists” or advice you find.

The other problem with low histamine food lists is that if you have leaky gut, virtually every food you eat has the potential to trigger you and therefor increase your histamine levels, since you are passing over-sized molecules of it that your body doesn’t recognize well and may consider a foreign invader worth reacting to. So it may pounce on a perfectly innocent lentil when you normally have no trouble with lentil protein. Voila, we produce histamine again from the over-active mast cells that encounter it.

And you can often eat more when you’re less stressed or excited than not. I stopped getting esophageal spasms once I removed more stress from my life and slowed down. And I still eat many of the same foods that triggered me before, but spasm-free. Funny how that works…

Why go needlessly limiting your diet because you read a list of foods in a certain group somewhere and eliminate the whole category before you even see if it’s a problem? (Common examples are lists of salycilates and oxalates.) I’ve found this kind of knee-jerk reaction most common in those with the traits of ADD/ADHD for what it’s worth – leaping to conclusions, and catastrophic thinking come much too easily to us, myself included.

Trust – and heal – your gut, I say!

Not anyone else’s! Yes, you may have a problem with some of these foods, but test first (carefully of course, especially if you’re a shocker or have true IgE-mediated allergies) before doing a wholesale elimination of an entire category. Sometimes it’s not the food you reacted to but its packaging, age, terroire, or variety. (Or its food source – what did the chicken eat?)

And be careful not to accidentally blame a food if it turns out you’re reacting to scents or chemicals as I just did with fluoride and chlorine this past year. Though usually those will cause a general increase in overall inflammation and trouble eating most all foods (I lost several pounds before I figured this out, I’m just now regaining). I innocently blamed some foods I ate after swimming a couple of times when it turned out to be the chlorine from the pool to blame for my increased reactions and inflammation at the time. (Though I’ll confess I had trouble eating almost anything at all from my constantly increased gut inflammation – big flag in hindsight.) Yes, tricky!

Of course, if you do find a whole category (e.g. oxalates or salycilates or corn) to trigger you, then listen to your body. But try not to needlessly narrow your diet before you have to just because someone else did or says to. We need all the nutrition we can get!

And frankly, if I listened to all the nutritional advice I’ve gotten in all the online groups I’m in, I’d be eating only air – no kidding! Pass me my tray of filtered ice please… though I will take some salt with that, smile.

Use your judgement, work with a chosen doctor, naturopath, dietician or nutritionist. However, if you are trying to gain weight thanks to our various comorbidities, do not let them talk you into eating “all the sweets and ice cream you want” just to lay on weight. That is not a wise move.

Sugar is one of the only truly universally toxic foods for everyone, but especially so for EDS patients due to the increased inflammation it drives among other things including our pain levels. (Truly!)  Some of us even react to sugar, go figure. (I do for one.) It also lends hugely to gas and bloating from chronic candida and SIBO which can eventually turn into oral thrush thanks to our thrashed immune systems from often comorbid CVID already failing to fight it off.

Ask them for help finding a nutritious way to gain that weight. And see if a naturopath or functional medicine doctor can’t help you reverse the weight loss due to some possibly hidden nutritional imbalance in the first place. (I know, sometimes it’s from neurologically driven gastroparesis which makes this really hard. But you know who you are.)

And for those trying to lose weight, please know that skimping on calories or food quantity doesn’t usually work. It’s best to eat a normal amount (as tolerated) of nutrient dense foods. We’re finding sugar and carbs in processed foods to be the real villain here again, much more than natural saturated fats with the animal it came on. Food, especially sugars can even impact our mood.

And I’m finding a lot of us show signs of adipose tissue (aka fat) disorders including both the better known lymphedema often driven by our comorbid MCAD, and the much less well known, but maybe not so rare either lipoedema – which can make it virtually impossible to lose much to any weight at all even if you’re still active. (I have a dear friend who suffers terribly from it, and has tried absolutely everything except surgery – it doesn’t work. And we’re not good surgery candidates, alas.)

It’s sometimes spelled lipedema, I think mostly in the US. And upon inquiring in the groups once with a general description, no surprise several people felt this described them to a T. So please know,  you are not alone out there with the weight gain battle and EDS! Some people also find their weight swings widely – from over to under weight and back again for as yet unknown reasons, though some may include endocrine imbalances. Yes, crazy-making! (Like I said elsewhere, we put the “syn” in Syndrome!)

This article about collagen and metabolic disorders may help explain this a bit, including our proclivity to diabetes, fatty liver disease and elevated liver enzymes. Remember what I said about falling down the rabbithole? It really never ends!

So many issues, so little time! But that’s the kind of havoc this faulty collagen disorder wreaks. Again, the sooner the medical establishment can wrap their collective brain around this massive syndrome, the better. But keep chipping away, one doctor and family member at a time.

Meanwhile, keep your nutrition up as best you can, and stay active at whatever level you can manage. Trust me, I know how little that can be too sometimes. I was once bed bound. But I climbed back out – slowly, but surely. One day, meal, and Vitamin C supplement at a time.

Some good sites on healing EDS to varying degrees via nutrition to inspire your healing journeys further:

To your health,

Jan (sans PB) December 2015

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You Know You Have Ehlers-Danlos Syndrome When

… you haven’t fallen, but you still can’t get up.

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I don’t have low pain tolerance…

… I have a low pain threshold, and feel loads of pain. I have very high pain tolerance. I just have much more pain than most.

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Birds of a Feather

DuckFest8723Blog

Fancy meeting you here…

Birds of a feather flock together. And although we like to call ourselves medical “zebras”, for the purposes of this discussion I’m calling us birds to honor the age-old adage. Because we definitely flock and hang together whether we realize it or not, diagnosed or not from what I can see.

I keep finding increasing evidence that hypermobile people are attracted to each other, and I’m developing some personal albeit completely unscientific theories about this based on my widespread observations of thousands of us on and offline in support groups and forums for over three years now.

Time and time again I have seen Ehlers-Danlos Syndrome patients on and off-line “discover” this fact for themselves after falling far enough down the diagnostic rabbit-hole to recognize enough signs. I feel increasingly strongly that we are like-minded with similar energy signatures in the world and so are attracted to each other, romantically and platonically. How so?

Well, a large share of us who are articulate on Facebook and other online forums and diagnosed later in life seem to all share traits of being very high-achieving (at least once upon a time when our bodies permitted), competitive, visionary, artistic, technical, scientific people and (drum-roll) often also medical professionals and practitioners. Or we seek to be even if we’re not “there” yet.

The other common thread or theme I see are those who like order (subclinical OCD anyone?) and adherence to rules and enter the military or medical professions and thrive on following the rules to be found in those careers. Almost to a person we also like helping other people and often exhibit empathic personality traits (some extremely so). Many find they are IFNJs or similarly “rare” personality types (according to the Myers-Briggs personality survey). Yes, this can be tricky in the military and medicine. The most sensitive among us often “fall out” from the stress of feeling too much on those jobs. (PTSD anyone?) Toss in sensitive mast cells and it’s a miracle any of us get through medical or nursing school.

Many with diagnosed children in my Facebook support groups start noticing their spouses show signs as well as they become acquainted with the myriad signs and symptoms the syndrome comprises. (I like to say we put the “syn” in “syndrome”, smile.) Much like what happens with Osteogenesis Imperfecta (aka “Brittle Bone Disease”, another genetic collagen defect with some overlap with EDS), parents are often diagnosed only by proxy to a more clinically afflicted child when being evaluated by a medical geneticist. Sadly it’s often only after the child is mistakenly sent off to Child Protective Services by some of those same over-achieving nurses and doctors who fail to recognize a heritable connective tissue disorder that’s causing the bruising and fractures in the children first. (We call this medical kidnapping, and it’s sadly increasingly common.)

We are often too focused on serving and saving others and the world to notice our own issues until they become show stopping if they ever do. I feel this speaks to why EDS is rarely diagnosed once again – we are a stubborn high achieving and “other”-focused lot. I likewise think most who are diagnosed currently probably pulled the short straw, and got two bad alleles, one from each side of the family leaving us with no good collagen, and thus more “clinical” than our siblings and parents (usually).

I’m finding this likely true of my own family where I was the fist to be diagnosed at 45 in 2012 after 25 years of complaints that got me nothing but anti-depressants, ibuprofen and eye-rolls. EDS runs quite clearly in a Mendelian inheritance pattern on my late father’s side, but only later did I recognize it in my late mother’s as well. Partly because she left when I was just 10 and my parents divorced, and partly because I knew very little about her side of the family and wrote all of her complaints off to her alcoholism like everyone else. (Poor mom! My maternal grandparents died when she was quite young, so I never knew them nor much about them since she didn’t either.)

The “penny dropped” and her health history snapped into focus better when I saw someone complaining about having to get full dentures at “just 30” years old in a Facebook group. (I would complain too!) I remember my mother having full dentures as far back as I can remember. (Weak teeth are quite common with EDS.) I always thought it was because she’d had 8 children across multiple marriages (I’m her last child), but I know plenty of other mothers of large families with all of their teeth yet and plenty of energy and strength to boot.

The light bulb went off for me then and I remembered that she’d always complained of back pain, arthritis, headaches, weakness and more. She was very sensitive with extremely thin skin that tore and bruised at a glance, varicose veins and phlebitis and multiple miscarriages among many other issues. Again, her dysfunctional alcoholism (in contrast to my late father’s “functional” alcoholism in which he held a steady job) and behavioral issues (depression, anxiety, mood swings and self-medication) clouded my memory – much like happens in doctors’ offices all over the world even today.

As soon as we exhibit clinical signs of any mental health issues, everyone stops treating us for pain and physical complaints. The same happened to myself such that I will now go to my grave trying to remedy that last observation for all. (We do have mental health issues that need treating -but we also have very real and quite painful physical issues that are too often dismissed also.) But I digress.

Everyone in the groups also seems to be on or related to someone on the Autism Spectrum, or is friends or works with some who are, myself included. Absent an autism diagnosis, we all show variations on a theme of OCD, ADD/ADHD, SPD, NPD, BPD, dyslexia, depression and anxiety among other behavioral issues (I call this the alphabet soup of sub-clinical autism). Those who are functioning in the workplace are often hiding an issue or two and “faking it till we make it” to varying degrees, some better than others. There is no shame in this mind you. Nay, we should all feel extra proud for “passing” in a very demanding and insensitive world with bodies that betray us besides. I’ve also discovered the trait of hording or collecting to be quite common among us, my family included. Alternatively the other side of the coin is quite common too – extreme tidiness, to a fault, both forms of OCD, mind. (Yes, even in the same family, trust me!)

Sadly, the more clinically so who actually get diagnosed with autism are often dismissed as attention seeking or whining when they complain of their body’s aches, pains and food and chemical reactions when nothing could be further from the truth. (I urge all caregivers and providers for same to be on the watch for this – not all can speak or express themselves as clearly as myself and others, and I know at least a couple who are suffering at the hands of uninformed and misguided state services as I type. Truly heartbreaking.) I think everyone on the spectrum should be checked for the trait of hypermobility at the very least. (I’ll bet you dark chocolate most have signs.)

Photographers, programmers, engineers, musicians, painters, gardeners… you name it, we pursue it. (Geneology nerds, history buffs and linguists with sharp wits and quick puns, anyone?) And lo and behold plenty of my own friends ended up on my “suspect” (of Hypermobile EDS) list after I learned enough signs myself. Some even came to me after self-identifying on Facebook with some of my posts. And just like in my family, I see a high rate of narcissistic and codependent (think “overly nice” and/or overly helpful) behavior among us. (The two often go together – we codependents are the only folks who’ll put up with the narcissists after all.)

Sorry if this stings anyone a bit, but it’s the truth for most of us whether anyone cares to admit it or not. I’m not judging anyone, just observing shared common traits among oodles of us. (Why some of  you think it’s “normal” – you’re surrounded by birds of a similar feather after all.) I keep seeing my family dynamic played out over and over among my friends and their families, even if no alcohol is involved. (Invalidating and stubborn family members or partners or doctors anyone? You’re so not alone! There’s also help for this behavioral trait – you can break the codependent cycle with work.)

On the upside I also find we all seem to channel (life) energy or Reiki as some call it quite well, attuned or not. Many of us are natural healers and pursue healing professions with or without formal Reiki training or awareness. (Everyone channels Reiki to some degree – you’d be dead without it, just some better than others.)  Many identify as or with so-called Indigo Children, and a majority of the highly sensitive among us are quite empathic and often exhausted by social interaction in large or noisy groups. (I urge everyone to read Dr. Elaine Aron’s great book The Highly Sensitive Person). That said, those with the hypo-sensitive form of SPD will be sensation seeking and can appear a bit reckless.

Again, these are extremely unscientific observations (albeit of thousands), but I’ve seen more than one discussion thread in which others share some of these observations. It’s just hard to get some of us to admit or recognize our behavioral issues and traits. (I only recently recognized signs of ADD and OCD in myself since my onset storm – and how, oof dah, an interesting experience to say the least.)

And again, we have myriad talents and achievements to show for it – more than most in fact. (At least  until our bodies give out, and even then.) Nay, I daresay we are all battling each other and as such are our own worst enemies inadvertently. The workaholics among us end up setting the productivity bar so high it’s unsustainable for anyone including ourselves – been there, done that! Rather like comets, we burn brightly as we blaze across the sky before we are gone. The more deliberate and steady-paced among us do the best it seems. (I’m still trying to channel my inner “tortoise” as I type.)

I’m extremely grateful for the advice an old programming buddy gave me years ago for scoping bespoke database projects: take whatever number of hours you initially think it will take to build and double it. Seriously. Then get over the sticker shock and present this to your client. Let me tell you it really worked and has served me really well since becoming disabled as I’ve been able to “scope” my “projects” (goals/tasks/ideas) more realistically than many of my afflicted friends without this practice. (Trouble finishing tasks anyone? Even without ADD/ADHD? Try scoping more realistically, then stay on task – no, not easy with ADD/ADHD/EDS/POTS/MCAD I know, trust me, but not impossible with steady effort.)

photo of a common brown Oregon finch perched on a sign frame

I’m no zebra!

Welcome to the “family”, I hope this helps you feel less alone. (I think we’re all part of one giant clan “Dumpty” of nursery rhyme fame – I’m still looking for any King’s men myself, heh.) We are the colorful, talented, genius, and eccentric folks in the world. Our light shines brightly and should continue to. We just need to support ourselves optimally to keep on an even keel, and we’ll still (and often do) accomplish great things (all while continually beautifying the world with our caring, arts, crafts and music).

That’s how I got back out of my wheelchair 2 years ago – by applying that same high-achieving spirit and stubborn determination (and engineering gene, lucky me) to my recovery as I did to my prior work. Yes, I hope to re-apply it to paying work again some day if I can just get my mast cells to settle down a bit more! (Doggone show stoppers!) Working on it as we type.

To your health,

Jan(droid) 3.14

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Introduction to MCAD June 2015

Cartoon image of a granule-filled mast cell

A granule-filled mast cell

As the current coordinator for the PNW Chapter of The Mastocytosis Society covering the greater Pacific Northwestern region of the US plus a few neighboring Canadians, I’ve been eager to help educate both patients and doctors as much as possible to this collection of diseases involving mast cell activation that goes so rarely diagnosed. Alas we aren’t in contention for a full scale TMS medical conference for another year at least, so I decided to offer a regional “Introduction to MCAD” meeting this past June to tide us over. I invited local doctors as well as patients in hopes of “infecting” a few more with this information, and succeeded in getting three local doctors to attend for the win! (Thank you guys SO much for coming!)

That’s three more doctors in the Portland, Oregon area who now have a better idea about when to suspect MCAD (any type), how to diagnose it (tricky, may need to consult specialists), and what to do about it (as individual as fingerprints with some common themes). We DEEPLY appreciate their generously taking personal time to learn with us to help shorten the diagnostic journey for many!

Of course I also threw in a little information on when to suspect the commonly comorbid Ehlers-Danlos Syndrome just to really round things out for them and everyone. I’m truly hard pressed to find any patients without signs of both – it’s just that folks usually cling to their first diagnosis and proceed to ascribe all other issues

okapi image

Is it a zebra or what? (Okapi)

to it (when you have a masto “hammer”, everything’s a masto “nail” and vice versa), or understandably can’t deal with “yet another rare systemic disorder”.

I don’t blame them, it’s a lot to take in. But there’s huge benefit to be gained from treating both sides of the equation – biomechanical and biochemical. Never mind the myriad other issues that can also plague us, adding to this incredible disease burden. (You’ll see a few more in the slides – I’ve grown “The Trifecta” to a “Hexafecta” I’m afraid.) And no, not everyone will have both/all, of course. But denial is not a river in Egypt either (smile).

I was lucky to also procure a gracious and savvy speaker on Nutrition for MCAD Patients, dietician Wendy Busse MSc, RD from Red Deer Alberta Canada who generously came down to join me and address how best to maintain nutrition with so many food intolerances and reactions. (No small feat!)

That said, she provided some wonderful insight into how not to always blame an innocent food without considering many other factors that may have contributed to our reaction first. (Emotional state while eating, the food’s source, preparation, brand, species, packaging, and more.) E.g., don’t write off all apples just because you reacted to one particular variety. Try other varieties, and/or sources (farmer’s market, organic, vs waxed shelf-stable in a commercial retail shop). Raw vs cooked. Try not eating when stressed. And consider the growing conditions. You get the idea.

I’m happy to share that Wendy also successfully recorded at least my talk (the camera pooped out on hers alas), and has provided a copy of my talk on video which is posted on YouTube here now. I’m offering my slides in both PowerPoint format and PDF for you to read along side since the video isn’t the highest quality. (Hey, it’s free! Though please do not use the material without permission first thanks. Just ask me first, or give proper credit, thank you.) At least she got the audio which counts for a lot and hopefully you can put the two together successfully and glean some good insight.

I  admit to hijacking the room and forcing them to take a short guided tour of my (this very) website at the start (since the venue had internet access) only because I’m exhausted from sharing my MCAD Resources page with newer people, only to find they can’t even be bothered to go look and keep asking me for material that I have posted there.

It is seriously loaded with some of the best and latest information and links to other great sources for drilling down further on all aspects of MCAD.  I’m quickly concluding we’re an awfully busy but sometimes lazy bunch these days, thanks in large part to television and social media that usually serve up information for us without us even needing to click a link. And I know, some folks prefer more graphics and videos than I’m offering. (I’m working on it.)

So I promise to work on my video and speaking skills if you’ll promise to read more, okay? And perhaps we’ll meet in the middle. Meanwhile enjoy this free offering in the comfort of your home in your jammies unlike the hardy folks who schlepped in to the live meeting which I deeply appreciate. I realize not all could make it that wanted, and that’s why we recorded it.

Cheers and Happy Fourth of July to my US fans,

Jan July 4, 2015

PS I would be remiss if I did not also acknowledge and thank Todd Mortensen from Nutricia North America for coming and bringing samples of their Neocate line of products to our meeting also. Nutricia’s Neocate line is one of the few some of our patients can tolerate thanks to the elemental nature of their formulas. Local Pacific Northwest USA region patients (WA, OR, ID) can contact regional sales rep Todd Mortensen at 1-866-538-6225 for samples to try if interested.

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