Tuesday, March 29, 2011

Thought Experiment: Possible evolutionary advantages for EDS

This post will actually be an ongoing thought experiment. I will sidebar link it and note when it is updated. I look forward to your thoughts and comments as we muddle through this puzzle together.

This is to be a brainstorming/thought shaping experiment. You are free and encouraged to post counter arguments and thoughts, but not to call something silly or stupid. It is only by generating a dozen silly ideas that we come up with the one brilliant one that can change the world.


I believe that EDS is much more common and far from a rare disease. I have already written about some of the reasons why I think the numbers are off. Then there are other anecdotal things:

a) my mom's rheumatologist telling her that "EDS is really fairly common, but we don't call it that unless it is really bad or it freaks people out".
b)The frequency that I see online forums for other disorders ( IBS, Dizzyness, hearing loss, etc..) where one person will say, "hey I was just diagnosed with EDS- anyone else out there?" and people come flocking out saying things like "My Dr told me I have BJHM, but not to the degree of EDS" or "I am double jointed and bruise easily, I have odd scars, but I don't think I have EDS", etc..  Really? This is rare??

If something is NOT rare, then it must in some way have some evolutionary advantage. ( Sickle cell disease in the haploid state protects against malaria, for example)

I think it is important to recognize that this  is a condition ( I am unwilling to call this a disease or an illness any more) with a spectrum of expression. Some people are mildly impacted, others are devastated. Is this difference genetic or epigenetic? If it is epigenetic, is it triggered by something in diet or lifestyle or something environmental. Can you impact it over the course of your life, or is it generational?  Until we ( and the scientists) understand the real prevalence and spectrum of the expression of the gene, we can not even ask the right questions, much less have a chance at finding effective treatments or lifestyle changes. Just like there are many shades of blonde, I believe there are many states of EDS.

So- what are the possible positive things about having really stretchy, bendable collagen? ( remember some of these are silly- we are brainstorming)

1) We get strong quickly. It may be impossible to maintain that muscle tone without constant exercise, but in an environment where humans worked or moved constantly, long periods of inactivity were never an issue. Certainly being able to gain strength and get really strong were advantages for multiple reasons.

2) babies who crawl late are less likely to crawl off and get eaten ( ;-) )

3) when you can open your mouth very wide, you can take bigger bites, getting more than your fair share

4) having a GI track that reacts to bulky, fibrous foods by expanding and slowing down allows you to absorb more nutrients from the difficult to digest plant material

5) Being overly anxious by today's standards might have been someone who was very vigilant and less likely to get eaten or taken down by an enemy ( especially if they were near sighted)

what do you think? I have not even gotten to a baker's dozen ideas yet- there must be many more. Please leave your thoughts, new ideas or counter arguments in  the comments below.


The Miracle of Movement

 As an infant, I walked a little late ( as did both off my daughters).  I am told I did an army crawl with my belly on the ground, rather than a full hands and knees crawl for a long while. But once I finally got on my feet, I moved.  Even though I was a bookworm growing up, I was always an active child. I read constantly, but often in odd places, like the top branches of a tree in my grandmother's back yard.

I think it started with the exploration walks my mom used to take me on. When I grew a little older I rode my bike on grand adventures ( when you are 6 a few blocks on your own is a grand adventure- by the time I was in middle school, I was biking around the county).  When we were not biking, we were walking. Then there was yard work. You know.. weed pulling,  lawn mowing, tree re-arranging ( what? your dad did not have you digging up and re-arranging the trees in the yard!?).  There was the swing set and pick up softball, sledding and ice skating ( which I was never much good at, but enjoyed falling and ankle twisting and drinking hot chocolate...) There was climbing trees. Wandering through the woods- with a gaggle of cousins, or alone.  All of it built muscle. Built strength.

 There were a few early years of Ballet that were traded in for horseback riding in elementary school.
I was a swimmer. Not competitively, but took to it like a fish. I raced through swim lessons, and pretty soon, I was teaching them myself.

I twisted ankles and knees.  I always had cuts and scrapes and bruises. But that seemed natural. I sprained things, and recovered. But I never stopped moving. I  had a bunch of growth spurts and was a complete klutz. I broke nearly everything breakable in the house. But that did not slow me down.

Then I hurt my knee more seriously.  I tore my medial meniscus and had to have it removed. This was back in 1976, before arthroscopic surgery.  I was down hard for a while.  Even then, I bounced fairly fast. I was a demon on crutches.  But some things were never the same. I was off and on crutches for most of high school and a few times in college. I played Volleyball for a while in High School, but often ended up with small injuries. I played tennis in gym ( for one day) and ended up with the worse case of tennis elbow the doctor had ever seen. We all wrote it off as me being overly enthusiastic. I dropped a jar of applesauce and broke a toe. Life became a roller coaster of activity ( mime club, marching band, swimming, walks, biking) and impaired mobility ( injury and recovery).

I am now convinced that all of this early activity built critical muscle strength and was a life saver. Yes, I had pains as a child. I had "growing pains" that sent me to tears at night. I had mysterious wrist pains that hurt so badly that we ended up inn the ER off and on for most of middle school. I had an endless litany of small injuries and aches.  But  I read stories of other EDS'ers and I know that things could have been so much worse. Honestly, we just thought this was what childhood was like. And for lots of kids, it is. And I am not so sure that is a bad thing.

In college and grad school,  I walked. A LOT. I danced a lot.  Once I had kids, I was carrying babies, chasing small ones, and taking them on exploration walks. They grew, and I got a full time job, but it was in a manufacturing plant, where my "desk job" really meant I walked the plant a lot. it was only 10 minutes from home, the driving was minimal.  I danced. I planted gardens and tended them. I ached, I injured, just like the rest of my life- but this was normal. I had learned how to successfully eat anti-inflammatory meds when needed long ago. I sometimes had to get off my feet, because my knees gave out. I danced more.

I was strong. People were always surprised that I could lift almost as much as a man. I accidentally created a legendary story by spending an afternoon tossing hay bales with a baby on one hip. One thing about this collagen, is that when you move and use them, it allows muscles to grow very strong. And that strength happens pretty quickly.

My job shifted and changed, became more global, more phone calls and coordination. But I could work from home. I spent lots of those phone calls on my feet, pacing the floor. I was still moving and strong.

Then I switched jobs. For the first year, I still worked half time from home and it was fine. Then the job needed to shift. I needed to be onsite all the time. I drove 90 minutes twice a day to get to the office. When I was in the office, people came to me, rather than me going to them. I was sitting at a desk more than I ever had.  This started in July of 2010 and went through the end of September.  I was stressed, not sleeping much and moving much less. I came home, I was exhausted, I did less.  I had started on a downward spiral without even knowing it. In August I developed a superficial phlebitis in my left leg,  I was on my back with my leg in the air. Moving my daughter into her college dorm, I had trouble hauling boxes up and down the stairs. Walking back and forth across campus, my knees and hips were painful and going out. I was gimpy.

At the end of September, early in October, I got sick. A respiratory bug. I fought it off, I thought. We had parents weekend I walked around campus again. After a bit of walking, I was in pretty constant pain. I pushed through it, but was glad every time a chair came in view. I went back to work for a week, driving, sitting and my respiratory bug was back. I could hardly breathe, the doctor thought I was getting pnuemonia. I had rattly lungs and was seriously pale. I laid down. For almost 10 days. Near the end of the 10 days, when my congestion was starting to feel better, I tried to get up. And almost fell down. Lack of movement had finally taken it's toll. I was instantly transformed. I was so weak, I could hardly breathe. I was weak everywhere. Legs, arms, back, core, neck, diaphragm. It got worse and the doctors were sure I had Myasthenia Gravis. Lots of testing and the recommendation was- do what you can and when you are tired, rest.

I got worse. My vision went double. I got progressively weaker until it bloomed into pain. By Thanksgiving, I was in constant chronic pain. My awesome neurologist battled forward with me, but nothing made a difference. Honestly, there was more than once I was certain that whatever was wrong with me, I must be dying. I could feel my body deteriorating under me.   I have already written about how I finally got my EDS diagnosis, so I am not going to re-cap that here.

Once I was on lots of anti-inflammatories ( at a level that I do not recommend to anyone). I started moving again. It was slow. I have an old Pilates DVD that has a series of 10 minute workouts on it. I started with the one that used to be my warm up stretching.. all on the floor. And I could not do it. I ended up in tears, it hurt so much to try. The next day, I put it on again. By the end of the week, I could get through the 80% of the 10 minutes without crying and pain. At the end of two weeks, I could do the whole 10 minutes and was adding a second segment.

I have continued on like this ever since. I yelled. I screamed, I grunted and moaned and cried. I really do not know how those of you who were told  by your doctor to join a gym did it. Most days, After the workout it was all I could do to get up off the floor. I never could have driven home again. Some days I would workout, then roll over and sleep for 30 minutes or so.  Personally, I would not have been able to curse and yell back at the instructor if it were a real person, like I did to my DVD. If I had not been able to yell back, I would have given up.

I learned early on that ice after the workout helped significantly. At first, I would do 20 minutes of workout, then run out the front door in my shorts and work out bra, lay in the snow for 2 minutes, come back on the couch and sleep for 30 minutes.  I have progressed to cold packs and rarely have the need to nap any more.

I am up to 35-45 minutes of workout  5-6 days a week. I am still doing Pilates and have added a bit of upper body weights, because my shoulder and arms were not improving from the Pilates.  I even occasionally add some wrap on ankle weights when I do the floor exercises to push my legs a bit more.

My pain is less ( not gone, it never will be). I am getting stronger ( but still have a long way to go to get back to where I was 2 years ago, even).

I have learned that  mornings when I am feeling weak, tired. That is the most important time to work out, my muscles are needing a strength boost. Some days, I still yell back at the DVD, bur I can do all the exercises in the routine now.

Yesterday, I had to go over to my old office and drove 90 minutes each way. I sat in a chair for 5 hours straight and when I came home last night, I was exhausted. This morning my shoulders and left leg hurt more than they have in about 3 weeks.  I know I need to move. This bendy body was built for motion, to be active. 

When the movement continues, I get strong.  When the movement stops, I am crippled.
The choice seems simple when you put it like that.

Friday, March 25, 2011

Fighting my way out of the bucket

When I was first explaining EDS to my husband, he joked around with me and said " so is all of your connective tissue going to deteriorate and you will just melt down into a puddle? I will have to carry you in a bucket". Being the geek family we are, I immediately thought of Odo, the character on Deep Space nine who was a changeling and used to retreat to a bucket to rest and meditate. I cracked up.

"No", I replied, "I will not be bucket-bound".
"But it could be so much fun. I could carry you around anywhere I wanted- nothing you can do about it ;-)".
"Sure", I said... " and put a lid on it takes on a whole new meaning".

Now first- no comments about how horrid he is. This was Exactly the tone of humor we both needed to deal with this and sort it out.  No cure. But no horrid progression to a bucket. Ok, we can deal.

On days when I am not having a good day. When the pain creeps up in spite of the meds. When I try something and am just not strong enough yet.  He looks me in the eye and says " yep, I see a bucket in your future". I immediately counter and tell him to give me a year- I will be an Amazon. ( God, who doesn't love Wonder Woman?) .  It has become the banter that keeps me crawling out of the bucket and into WonderWoman status.

Luckily, I have found some resources that are helping. Here is what I know so far, and what has worked for me.  I will list the basics here, then tackle each one in more detail in future blog posts.  ( I am NOT a medical professional. You should always discuss things like this with your Dr, if you have one)

  • Exercise is critical. Luckily some Twitter searching brought me @apetersen219 and from there, her blog AnneVs EDS.  It was through her I found Dr. Mark Lavallee, and I am excited to be able to start working with him in June. This is where I heard the story of him going from wheelchair for most of his youth, to running 5K races. I was sold on the exercise bit. I define this a part of my daily medicine and stick with it. 
  • Stress is Killer. Not just in the obvious, "stress makes me feel bad" way, but in biochemical ways as well. Stress increases  levels of Cortisol in the body. Cortisol Destroys Collagen. When your collagen is already messed up, the last thing you want is not enough of it, too.  The things your body interprets as stress are not just the things like pressure at work or financial bill paying. They also include things like sleep deprivation, chronic pain, sitting/laying in one position for too long, and bad nutrition or dehydration. I am fighting this in many ways.
  • Nutritional supplements. This one frustrates me a little. I hate taking lots of supplements. I am a believer in whole foods, eating balanced and making sure needed nutrients are in your diet. But for now, it seems there are some things that my body needs in higher doses than I could consume, so I am supplementing. Hopefully, this is not forever.  I supplement:
    •   between 2-4 g Vitamin C ( critical for collagen formation) per day ( just depends on how many times I remember to take the danged pill. I always remember to take with other meds, so at least 2).
    • a "stress" vitamin. This is a mix of B Vitamins, more vitaminC and zinc.
    • a regular muti-vitamin
  • Anti-inflammatory meds.  I take naproxen by prescription. When I see my rheumatologist for the first time in mid-April, we will talk more about options on this one, but for now, it works. 
  • Diet Changes. I am still exploring these, so they are not set in stone by any means. So far i am working hard to increase my dietary Omega-3s ( has great impact on Cortisol production and reaction) and trying to cut refined sugar back out of my diet ( damn you Peeps), as I have recently learned that Sugar can block the absorption of Vitamin C. 
  • Cold packs. Especially right after exercise. But also at random times during the day when I ache. And to go to sleep at night, and immediately after I wake up, for the half hour I just lay in bed and am not up and around yet. At first, I had a limited supply of these, and in Jan/Feb developed a habit of going and laying or sitting in the snow piles right after exercise. ( It was a silly suggestion, then a dare, and then, well- it really worked...). But snow melts, and I am lucky to have a darling sister in law who made me a dozen 5X12 cold packs filled with flax seed.    I honestly hate being too cold, so you will often find me in a cacoon- with a layer of cold packs, then blankets wrapped all around in an attempt to get warm. 
Well, there you have it- from a bucket to Wonder Woman in 6 ( not so easy) steps. How do you deal with EDS pain/limitations? What works( or has failed) for you?

Thursday, March 24, 2011

I am not a Dr, but I once played Dr House...

I did not play him on TV, but did play him in real life. That is how I ended up with my EDS diagnosis.

It started last fall with a progressive muscle weakness that  everyone, even my very smart Neurologist, was certain was Myasthenia Gravis. Since I already have one auto-immune disease ( Hashimoto's Thyroiditis), it was not a leap to think I had developed another. I was looking at odd and rare forms of MG, however because something in the back of my head kept seeing patterns. My mom had been diagnosed with MG when she was a little younger than I am now, but then she went to the gym, worked out hard and they never could find it again. Last winter my eldest daughter had a weird episode of weakness and pain in her shoulders.  There was something connecting us all together. I was certain of it.

But all the testing came back negative, Lyme, ALS, lupus, you name it, we ran a test for it. And then so did all the testing for MS, or other Brain problems ( like tumors). My poor Neurologist was puzzled beyond frustration and was finally ready to categorize me as "somatization disorder" or "something else psycho-neuro that we do not understand".  He was not giving up on spinal MS and was arguing with my insurance company over cervicall MRIs and scheduling spinal taps.  The neurological "solution" was not looking positive. Frustration levels were high from all three sides of this experience ( mine, the doctor and my husband, who was at my side through it all).

By this time, my pain levels had increased as well. I wasn't just weak, I HURT.  I was living with a constant pain level of about 8. It was enough to make my life miserable and functioning very difficult. I randomly cried a lot. I could not think straight. My memory was going. I was beginning to feel a little crazy.  I asked what I could take to help me cope with the pain without interfering with the remaining tests. My doctor told me that it was safe to take naproxen either at the analgesic ( over the counter) levels or even at the higher anti-inflammatory levels ( prescription strength). He thought the analgesic might help a little, but did not see any reason that the anti-inflammatory would touch the pain.

Just the opposite was true. At analgesic levels, nothing changed, but at anti-inflammatory levels, I started to get a little relief. That meant that whatever was going on had some inflammatory element. After two days on naproxen over doses ( I was determined to hit it hard, I was eating and taking nexium and had no intention of doing this for an extended period of time- I value my stomach), the pain was at about a chronic 5 and early in the day, I could pinpoint areas where it was worse than others. It was no longer just diffuse hurts everywhere.  I started poking and prodding my body and realized that all the places it most hurt were muscle insertion points.  

I called my mom and told her what I was experiencing, and she said " that is what my physical therapist always says-- my tender points are muscle insertion points".   Again, that genetic connection. However,my brain was still locked in on the auto-immune factor. ( my mom and I both developed hashimotos at the exact same age-- so I know autoimmune can have genetic influence).  I hit Google and searched for "tendon inflammation pain autoimmune" . This led me to lots of links on Lupus ( which I had tested negatively for) and RA, which I suspected for a while, but the symptoms were not quite right.  Maybe I had some new, undiagnosed form of autoimmune disease that was hiding in other people at CFS?  I started digging for Colllagen auto-immune diseases, looking for a pattern, something that would seem to fit. Nothing was really right. Interesting, the ways our body can fail us- but not what I was experiencing.

In the meantime, I had started trying to do my Pilates DVD again. I knew just sitting/laying on the couch for months was a bad thing. Now that the pain was down a bit, I tried to get up and move. I could not do a 10 minute segment all the way through. I cried. It hurt worse than sitting, but something in me screamed to get moving. Maybe it was the fear of my neurologist trying to classify this as my head breaking my body.  While that is a real problem, I knew that this was a case of my body inducing depression in my head, not the other way around. The only way to prove them wrong was to shake the fog in my head hard and try to get a little light in. I made myself smile. I found every positive thing I could. I fought HARD. I cried a LOT.

I kept poking Google, looking for some combination of something that made sense. I came across a link for Prolotherapy, and on that page, it had a link to Ehlers Danlos Syndrome. This was not the first time that Ehlers Danlos had crossed my path. When I was diagnosed with Nuerocardiogenic Syncope about a year previous, EDS had come up as a related syndrome. When I read that, I immediately recognized myself, but the article I read said NOTHING about pain ( or weakness). I had thought that there was an interesting name to my "circus freak" capabilities and dismissed it.  Since it crossed my path again, I decided to dig a little deeper. One of the first links that popped up was a new ( Dec 2010) NIH report that listed chronic pain as one of the symptoms of EDS.  I remember reading this sentence about 5 or 6 times over again in stunned recognition:

" Chronic pain, distinct from that associated with acute dislocations or advanced osteoarthritis, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common."

This was ME. 

From that moment on, I knew that EDS was the reason I was here, experiencing this. I dug deeper. And Deeper.
I learned that experiencing a sensation of weakness or fatigue is sometimes our body's way of protecting us from chronic pain. It figures that if there is constant pain there must be injury and tricks us into immobilizing that area by inducing weakness. 
 My progressive muscle weakness was my body's reaction to increasing pain.

I learned that Stress increases cortisol levels, and cortisol destroys collagen. 

My life stresses were increasing the symptoms and problems I was having. 
I cancelled my Neck MRI and my lumbar puncture. I made an appointment with my family physician's office  to see what they thought. The doctor I saw agreed that it was possible, but had never seen EDS before and referred me to a local rheumatologist ( I am still waiting- that appointment is in April).
I learned there was an EDS specialist Dr about 3 hours from here and called to try to get an appointment. They required a confirmed diagnosis before setting up an appointment. They referred me to a genetic specialist. The genetic specialist confirmed EDS, but to my surprise pointed out other features ( pes planaris and atrophic scars), some of which indicate Classic, rather than Hypermobility. I score a 9 on the Beighton scale. I have features of both Classic and Hypermobility, but we are still waiting for my blood test results to come back.
I have an appointment with the EDS specialist in June.
Now I am working on getting appointments for my daughters to screen them as well. There will be no surprises, I am already pretty sure what the results will be.

If Dr. House ever wants to take a vacation, I will be glad to take over for an episode or two.

Monday, March 21, 2011

EDS- A rare condition or a rarely Diagnosed condition?

I am starting to think a little radically about EDS.  For many years, EDS was considered to be a  " rare joint and skin" disease. But we known now that it is a connective tissue disease. Connective tissue that runs through our entire body and can impact multiple systems.  But EDS is still considered to be fairly rare.  I am here to say that I am starting to call that into question.

The standard stats say that about 1 in 5,000 births is an EDS birth. Maybe there is a status in being a " medical zebra", but I think there is more influence in being recognized correctly.  Since my diagnosis, I have had 5 families of  people cross my path, stand up and say " Hey I have that". Or "my sister has that" or "Wow. I have all of those symptoms, I am getting evaluated too". These are people I have known in different parts of my life, in different physical locations and none of them because of EDS ( i.e., not the people I have met who blog about EDS, in doctor's offices, etc..). Most of those 5 have multiple family members who are diagnosed or who share symptoms.  I did not identify them, they self identified to me. This is not a case of me having a hammer and having everything look like a nail.. None of them are member of my extended family. ( in my extended family, I am starting to look for nails...)

If the ratios are correct that would mean I know at least 25, 000 people. That is simply not the case. Yes, I know a bunch of people... but NOT 25, 000  ;-)  Lets go way overboard and say I know 5,000 people ( not a chance).  That would put the odds at about 1 in 1,000 Births. Significantly lower. However, the most I have talked about this is on Facebook.  On Facebook, I have less than 500 friends,  but we will round to 500. Two of the people are from local connections and discussions off of Facebook. So let's double that number- that means about 1,000 people had a chance to know I was talking about EDS and /or to hear the symptoms  that I was discussing.  If every single one of them was fully informed and self aware, that would put the ratio in my circle of friends at 1 in 200 births.  Now consider that about a quarter of the people that I am friends with on Facebook are family to whom I am genetically related and I am not counting those EDS or suspected EDS cases ( which would, I suspect, skew these numbers to a ridiculous proportion). That drops that percentage to 5/900. Then factor in that both on Facebook and in real life, you are doing well if half the people you know are informed. That would drop the percentage to 5/450..  or 1 in every 90 births.   Talk to me again in about a year, I bet I have stats that indicate that this is even lower.   That puts EDS into 1.1% of all the non-family births I have crossed.   The frequency of redheads in the US is 2%.  That make EDS a little more than half as common as being a red head- doesn't sound like much of a zebra to me.

Now, most of these 5 are NOT currently suffering joint problems that cause them to seek medical treatment. So why should I care if there are undiagnosed EDS cases ( or silent EDS) in the world? Because all but one of these indicated they have or have had some other problem that was likely related to their EDS ( IBS, Ruptured membranes and pre-mature births, heart problems). All of them indicated some joint problems that were either mild and never needed treatment or were temporary and they have learned how to cope with them ( dislocating knees they wore braces for, frequent sprains, etc..).

We know that EDS has varying levels of impact on people.
There are also more and more studies being released that show that previously non EDS diagnosed patients being seen for other medical issues ( especially GI issues)  evaluate as EDS when they look for it.

Why do I think it is so important for us to find the silent cases? 

Because so much of EDS treatment is either preventive or maintenance. The earlier people know about it, the sooner they can make smart choices in life and potentially avoid some of the problems- or be informed about other possible implications and not be surprised or puzzling or mis-diagnosed ( frequent with EDS) and suffer longer than needed.

What do I think this means?

I think that at some time in long ago human history, there was some advantage to being flexible( other than  that... ), or there is some linked trait that took the EDS cluster of mutations along for a ride.  The truth is that science still knows very little about the genes involved with EDS, so it is hard to say why it was propagated.
  • People then did not live much past 40, so they did not get hit hard with the impact that aging has on EDS, and it had no impact on their reproductive years.
  • People long ago for the most part  were active and physical ( true even up until 40 years ago or so), so they did not see the bad impact that couch potato/long car commute/desk job syndromes) are causing on EDS today. It is telling that one of the biggest treatments for EDS is to workout.
  • People then rarely had the opportunity to eat huge bloating meals that extended their stretchy GI tract or caused other issues. 
What does this mean for you ?

Maybe nothing.  But if :
  • you are currently being treated for a heart arrhythmia or valve problem ( NCS, POTS, WPW or MVP)
  • you are currently being treated for IBS or any sort of spastic GI problems
  • you get treatment or suffer from chronic constipation
  • you suffer from chronic muscle/joint aches/pains or weakness
  • you get frequent sprains/strains/dislocations/ tears or  bursitis in your joints
  • you are treated for or have GERD 
  • If you have had or have TMJ
  • If you are being treated for Restless Leg Syndrome
  • If you had an unexplained stroke or CV event
  • If you had incompetent cervix or ruptured membranes.

It might also be worthwhile to see if you also have any of the following:

  • A Beighton Score of 4 or higher ( or even lower if you are >50)
  • Pes planus ( foot may look like it has a great arch, but flattens and outer foot grips the ground when weight bearing)
  • Atrophic scars ( thin, wide scars that tend to spread or get stretch marks over time)
  • Wounds that dihisce (cuts or burns that  separate even further before healing)
  • Thin, translucent skin that you can see veins through easily
  • Easy/Frequent Bruising
  • High, narrow pallete
  • Teeth with very deep grooves
  • Teeth that break or crack easily
  • Clumsy as a child or Teen ( or maybe still now)
  • Cigarette paper skin ( with me this shows as thin very wrinkling extra skin at elbows and knees)
  • Any history of EDS in your family
  • Bladder or Uterus prolapse
  • Hernias of any kind

If you answered yes to two or more off these, it might be worthwhile getting evaluated by someone who is a specialist and knows EDS well.  Not because there is a miracle cure ( there is not)- but because knowledge is power and it allows you to make good decisions about your life and lifestyle.   Yes, there are lots of people with GERD or IBS or Heart Problems without EDS. I am NOT saying that you have to have EDS to have those things. There are lots of root causes for common medical problems.  But it is possible that you have one or more of those... and do not know you have EDS.

EDS- what it means to me

Well, I finally got a diagnosis confirmed. (the story of how I figured it out in another post where I play House himself).  So now I have had some time to process a bit on Ehlers-Danlos Syndrome, what it means to me and the point of this blog will shift a bit ( thus, the name change). I have learned a lot, about the "disorder" and about myself in the last month or so, and I know that learning will continue over the next year. I hope by sharing the process others can learn as well.

First the baby basics- EDS is a genetic connective tissue disorder. It makes my connective tissue stretchier than normal (and sometimes weaker). This is not always a bad thing, but as I learned last fall, if you do not understand it, can become nearly catastrophic.  My blood has been sent to Baylor Medical  for genetic testing, but it will take several months for results to come back. Dr. Bader, the very wonderful  doctor in Ft Wayne who did the diagnosis and analysis says she most suspects it is a Classis EDS, but I have symptoms of  Hypermobility type as well.  More interestingly, she also told me that only 50% of people diagnosed as EDS come back with a known genetic marker. This is because we really do not understand EDS well, not because I do not have EDS. If I have a known marker, we will do blood tests on my two girls. If I do not, there is no point in the expense. However, we are working on getting them evaluated. I am pretty sure already how the results will come back.  I have also been lucky to find an EDS specialist here in Indiana and now have an Appointment (yay) at his EDS clinic at the beginning of June. I have been even luckier to make internet friends with someone who is already seeing him, and have been putting some of the basic advice he gives into practice in my life now. I have no intention of waiting until June to really feel better ;-)  I also still have an appointment with a rheumatologist in April to work on pain and anti-inflammatory meds. I am still waiting to see if I need to make an appointment with a GI specialist, or if my family doctor will work with me on nexium prescriptions.

So, there is impact number one:  I suddenly have a medical team working with me, instead of a family doctor and the endocrinologist I see for my Hashimoto's. Yikes. However, I hope that by the end of this year, I will be doing much much better, and many of those team members will become annual or even every other year  maintenance check ups.

 Impact number two? More pills. An annoyance. Luckily I am managing to keep it at a reasonable level. I have had Hashimoto's Thyroiditis for about 10 years now, so I have been over the "I have to take pills every day" mental problem for a while.  But this makes the pile bigger. A headache, but it is seems to be helping. What's new  in my pill pile? Naproxen ( has been a critical life saver, but I work towards scaling it back), VitaminC ( 3-4  1mg pills/day), B vitamin mix with D and zinc as well, and a Nexium once a day for GERD.  Not so bad, really. Annoying, but easily live-able.

Impact number three is a very positive one. It suddenly makes so much of my life make sense.  The clumsiness as a kid, the "growing pains", odd aches, easy sprains and tendonitis. The horrible menstrual cramps as a teen, my NeuroCardiogenic Syncope, spastic GI track under stress. The herniation after a tubal that almost killed me, the loss of upper body strength in recent years. They are all dots that look very different, but assemble into a picture when you know what to look for.  Understanding what the strength and weaknesses of my body are now allows me to work with them and get better and stronger, instead of weaker and sicker.

The last impact is that regular non- joint stressing, non-hyperextending, no resistance band exercise is now a regular part of my daily life. No matter if I am tired, weak, achey, creaky, loose, popping and clicking, hurting, the exercise is now a form of medicine and I have to do it to maintain. The good news is that EDS folks tend to build muscle fast. The bad news is that we lose it almost as fast. Skipping more than 2 days means way too many backwards steps and pain for me at this point. For the last month, I have religiously been taking this medicine at least 5 days a week. It started small back at the end of january, 10 minutes a day that ended in tears. For the last 2 weeks it has been 45 minutes a day and no tears at all. Still ice packs after about half the time.  My goal is for 45 minutes of hard workout that is maintenance, with no need to ice or ache after.

Over all, the diagnosis has been Hugely positive- because the truth is, this is genetic and I have had it all of my life, the diagnosis did not change my connective tissue, it changed my understanding of it. More knowledge is always a good thing.

So what does all of this mean in my life?