Tuesday, July 12, 2011

I am full of Sh!t

Warning: This is a TMI post.
Turn away now if discussions of bodily functions make you a bit squeamish, or you just don't want to know. ;-)

I am currently recovering from the Stomach Flu. It set in early evening on Sunday and by Sunday night, I was full on Puking up my Guts. Not a casual "oh my, I think I may vomit" sort of way, but a deep, wrenching - "god just take me now" can't stop the dry heaves sort of way.

After 14 hours of that, I can guarantee that there was NOTHING in my stomach or above...

After that, we proceeded to a goodly bit of messy diarrhea. It was NOT the worst that I have had , but it was a solid 3 hours of emptying of the intestines.

And yet, as things settled down, and I managed to keep down some ice chips and 6 saltines, I had yet another Bowel Movement. Of Normal Size.

Now where the frack did that come from?? Side effect of stretchy collagen ( which means stretchy GI track) Apparently I AM actually full of shit on a regular basis, without even knowing....

Sunday, June 19, 2011

You are not Sick.

** It is important if you have any collagen defect that you have an echo and /or an ultra sound to make sure that your heart and blood vessels are not dangerously impacted. Talk with your doctor about this and follow the safety limits they give you **

Our medical system is a well tuned machine for getting sick people healthy again. If the illness is caused by outside agents ( bacteria, viruses, etc..), the medical system is at its best. If the illness is caused by lifestyle choices ( smoking,jumping from planes without parachutes, etc..) it is pretty well geared. Doctors are trained and mentally programmed to make people well and healthy. What happens if you are not sick?

I have EDS type 3, hypermobile. It is a genetic disorder of my collagen. I am not sick. My husband likes to say that I am broken. Some days,it really feels like it. A lot of days, it does not. What it means is that my collagen gives me different limits and life parameters than other people. Like all Collagen disorders ( EDS, Marfans, and many others) it manifests as a spectrum. My daughters both have EDS as well. One of them has Hypermobile thumbs, but not fingers. The other has Hypermobile fingers but not thumbs. You have to listen hard to your own body and understand what it is telling you. But the chances are that if you have any kind of collagen disorder, you also have dysautonomia. Again, this may have many causes and many effects. Your symptoms may not be the same as mine. But I can guarantee you one thing, the most common advice you will get from other people is the worst for you.

Here is a scenario you are familiar with. You are having a "bad" day. For me, this means that when I move fast, I am light headed, that my heart races and I get chest pressure. My vision gets blurry to double, and concentration is sometimes just impossible. For you, it might mean you can not get to standing without passing out. I am not minimizing the impact this has on your life. Now, you look a little off, or you are behaving a little off and the people close to you ask how you are. "is anything wrong?" "are you ok?". If you are honest and tell them you are having a bad day and feel really crappy, they will reply " well, get some rest and feel better".
You may have even had doctors tell you this. Feel bad? Rest, let it pass and then try again the next day. if you had the flu, or had eaten some bad chicken burritos the night before, this would be excellent advice. When you are sick, you need to rest to give your immune system more energy to fight off the intruders.

But. YOU ( and I) are NOT sick.

Rest is your enemy.

Can't get out of bed? Do what you can. Do leg lifts, have someone bring you soup cans and lay there lifting cans. WORK your muscles. Exercise, movement, activity is your friend, even when you think it is killing you.

Exercise intolerance is a symptom of dysautonomia. Exercise every day until you reach your personal limit,then stop. Do it again the next day. And the next. Eventually, your limits will slowly increase. You might never be "average" or running a marathon, but you will be more functional.

Malaise, fatigue and depression are all end results of dysautonomia. First step is to work with your doctor to treat it in ways that make sense. Second step? Change your attitude. Yep, you will be tired. Keep moving anyway. Yes, laying down on the couch and watching XFiles reruns is going to sound so appealing. A 3 hour nap in the middle of the day will scream your name. it might feel like you are so exhausted that if you get up and do those dishes you will just fall on your face. Taking a walk with your best friend or family members might make you feel like you ran the boston marathon. Don't give in. Keep moving. Get stronger in any way you can.

Seriously. Push through. So WHAT if you are tired, push harder. Having dysautonomia does not mean you can not do things. It means that doing them will sometimes be harder. At first, almost everything will be impossible. Especially if you have been resting to heal for a long time. Doing 2 situps will make you cry. Go ahead. Cry. But do the situps. After a bit of time, you will be able to do 5 then 25 then 50. Blood flow is a combination of the pressure of the veins and arteries pushing back against the blood and muscles pushing on them. When your blood vessels have weak or stretchy collagen,you better have really strong muscles to compensate. Unfortunately, collagen disorders make it harder to maintain muscle tone, so you have to do this every day.

This is not a prescription that you can do a 10 day course of, feel better and stop. This will be a lifestyle change. Dr. Lavallee ( EDS expert) recently told me " I have to eat every day, I have to drink water every day, I have to shit every day and I have to exercise every day". He told me the only day off I should allow myself is in the hospital for surgery or when I have a fever. It is a hard pill to swallow. I am not perfect about it, especially on my really really good days. But exercising more has meant that I have more and more of those really good days.

People try hard to be kind, we fight to be recognized as having an "invisible illness", and have them understand our limits. When someone offers to carry something for you, or to push, pull or move for you, tell them Thank You, but NO. Sorry, you do NOT have an invisible illness- you have a genetic defect that means that you have to push your body harder, not accept more assistance. Now, you might not be able to carry the bag to the car and still lift it up and get it in the trunk. Tell the offerer of help that you are going to carry it, but might need help loading. Carry it. Then TRY to load it in before handing it to someone else to load. Just the act of trying is working your muscles as much as you can. A few weeks of trying and you might hit a day when you can load one, but not the others. Then you might be able to load half the cart of groceries without help. Depending on your condition, even the whole basket ;-)

I can not tell you how strong you can get, but I can guarantee that unless you are already doing strength training exercises every day, you will improve. You will hurt. You will get tired. You will cry. Do it anyway.

Tuesday, June 7, 2011

All in the Family

Last Thursday I took both of my daughters up to see Dr. Bader at the NE Indiana Genetics Center. Sure enough, as I expected, they were both diagnosed EDS. They only had Bieten scores of 7. One of them has thumb hyper and not finger, the other has finger, but not thumb. Isn't it odd how all of this sorts itself out in different bodies?
We sent off their blood for testing to see if they have the same genetic blip that I do.. but my biggest hope is that by being diagnosed while still in their late teens, they can make smarter choices and avoid some of the complications/challenges that have beset me in the last year.
We expect to get the blood test results back from my parents within a week ( they sent theirs in several weeks ago), but it will be July before we get the results back on the girls.

On a more positive note, this Thursday is my first trip up to see Dr Lavallee. While I am dreading the long early drive( especially since it looks like I may be making it alone), I am very excited about getting some more insights and some more treatment/prevention tips and tricks.

Wednesday, May 4, 2011

I am a backward walking Superstar

I had my first real day of Physical Therapy yesterday. ( my evaluation was the week before). I think I am going to love this.

We are starting with pool-based therapy, as my left ankle tendinitis is pretty bad and they want to get some weight off the leg while we get better joint stability.

The person who will be my regular therapist was out sick, but my substitute was good. I am the first EDS client they have had, but both of the therapists had heard about it, had done some reading up and were willing to listen and learn. This therapist was especially patient and did not make fun as I asked lots of questions and needed extra feedback about body position ( who knew "shoulder-width apart" was only about 6 inches, not 18??

Pool Therapy to start is a treadmill built into the bottom of a warm pool. There is a video camera by my legs, with a monitor at eye level, so you can walk in the pool and both you and the Therapist can see what your lower half is doing.

Turns out my gait is a mess, and I walk backwards. Even when going forward.

A good gait has you dorsiflex ( lift from the toe) your foot, extend your leg with your knee slightly bent and land heel first, with the weight then rolling through your foot to your toes. The impetus for this action actually comes from the push of the back leg that is rolling off the toes from its step. This video shows it much better than I could describe.

My gait? I was walking by extending my foot forward, landing on my toe, rolling through the heel and pulling my body forward. I was also twisting my trunk too much side to side, using my trunk muscles to help move me forward and bypassing my hip stabilizing muscles.

The closest I can come to a video to show this is this video of shod horses walking. Apparently it is common for a shod horse to have the same gait problem and land toe first, injuring themselves.

Who knew?

The one piece of good news is that toe first is the correct way to walk when stepping backwards and I am a backward walking superstar ;-)

The theory is that this developed as a coping mechanism for unstable foot/ankle/knee/hip joints at some point and was probably aggravated when I spent a couple of years off and on crutches in middle school/early high school.

This is the biggest reason that I am a trip hazard. Apparently, if I can fix this, I will not only injure tendons less, but will be less of a klutz. Even stepping sideways, I found myself stepping out and pulling myself to the extended leg. I could feel my ankle joint rolling and aching. When I consciously corrected this and pushed off, I landed the extended foot solidly and no ankle rolling.

Walking the "right" way? Feels incredibly ODD. Actually, it feels like I am going to fall on my face...but apparently that is a normal sensation, and triggers the brain to walk and step forward-- and most people got over this sensation at about 12 months and now their brain does not even register it.

Besides just thinking about it, normally you would do calf stretches to stretch out the Achilles. However, that normal stretch motion just shifts my feet and ankles around and does not touch my Achilles much. That may be a challenge I have to take to Dr. Lavallee in June and see if he has a better answer.

Monday, May 2, 2011

I may have EDS, but I have a life, too...

I know this blog is supposed to be my "EDS Blog" , but the truth is while EDS impacts all facets of my life, I still have a life. if you read just this blog, you might think. Wow.. what a horrible struggle. But the truth is, I am finding ways to gracefully bend and work around them and still get projects done.

Because I was dealing with so many medical issues last fall ( before we understood what this is and how to work with it), my gardens got seriously neglected. No last fall cleanup, no trimming of the perennials, just a mess this spring.  I lost a few plants, but most everything survived.

I have a favorite shaded garden at the end of my clothesline.  This is what it looked like before the clean up:

Kind of a scary mess, eh?

Now here is what it looks like AFTER the cleanup. 

long view( lots of daylillies to the left)

I uncovered the hastas, coneflower , coreopsis and daisy starts that were buried.
The ostrich ferns in the back, I transplanted from a too sunny spot. 

newly planted cinnamon fern

First Trillium Leaf uncovered

Was this just as fast and easy as  it would have been even 3 years ago? Not at all. But I have figured out the work arounds for several reasons. 

  1.  Sanity. Keeping as normal as possible helps me and the rest of the family balance. I know days when my pain is worse and I am hitting the  ice packs and meds harder, it has an impact on the whole family. When I can have a fairly normal life, it is better for us all. 
  2. Stress Relief.  i am probably an oddball, but getting my hands in the dirt is almost meditative for me, it helps me relax, calm and ripping out weeds is very satisfying ;-)  Afterward, although I am tired, I feel calmer, and the aches do not hit me as hard. I know this is helping to lower the norepinephrine in my system, which lowers my body and brain reactions to the pains I have. 
  3. Strength building. Ok, sitting on my butt is not exactly aerobic, but there is muscular strength used in pulling weeds and digging holes  (especially when shovels are involved)  that works muscles I do not work in many other ways. Any activity is good activity. 
So how am I managing it?

  1. Don't rush. It takes me longer than it used to. I pace myself.  I do not try to do half a dozen projects in one day. 
  2. Take breaks. It used to be I would dive into a project  like this and not come up for air until it was done. Now, I take breaks. As many as I need, and I do not let myself feel bad or guilty about it. 
  3. Switch it up.  In a project like this, there are lots of different things to do. Some mean I sit, some mean I stand. Some are pulling, some are digging.  Rather than tackling all the sitting task at once, I switch it up.  10 minutes or so in a position, then find something to do that requires me to work different parts of my body. This lets me last 2-3 times as long as I would if I pushed just one position and then got hurt. 
  4. Ice is my friend. When I take a break, I strategically place cold packs for 5-15 minutes. Every little bit helps. When I can prevent some inflammation early, I can last longer. 
  5. Get help. For me, right now the worst part of garden work are things that require bending over and picking up repetitively.  Things like the aftermath cleanup and picking up piles of weeds and litter and getting them to the compost kills me. So, I  recruit help for those pieces. Instead of holding onto stubborn determinism and injuring myself, taking me down and out for longer, I try to delegate out the tasks that I know will be problems.   Luckily I am blessed to have a household of helpful hands. 

I hope this gives you a better view of me as a whole person, and not just my battles/strategies with EDS.  If you want to see more of my garden projects, you can check out my normal Geek/Gardening blog.  If you just want to page through some other pictures of garden/yard projects, you can page through the Picasa album.:

Friday, April 29, 2011

New Rheumy

New doctors are always a tense encounter, even if there are no medical complications in your life.
I was both excited and nervous when my Rheumatologist appointment finally came around ( had to wait almost 2 months from when I called for an appointment).  I know that this will be the primary doctor I work with for pain management and staying as active and strong as possible.  In my mind, I wanted her to be well informed, have things to teach me, as well as listening to my point of view, research and experiences thus far.

I think it will work out well. She was informed about EDS, and told me one or two things I did not know.  She taught me that my right hip popping and clicking( which it has done since my teen years) may not be a tendon problem, but might be joint deformation or damage. We are getting an XRay as a baseline, so we can track any changes and better anticipate a course.  She did a thorough joint exam and confirmed that the joints where I currently have the worst pain were cases of tendinitis, and that I should treat any new points as we move forward as if it were tendinitis, and not just a general ache to ensure faster recovery. Some of it is in joints that have been active for so long that I did not realize it was an issue- I had just adapted to it. It was good to have it pointed out .  I say once again- thank $Diety for refreezable cold packs ;-0

She was a little too fast to offer meds and I had to push harder than I liked for alternative treatments.  It was good not to have to argue when I asked for two different doses of Naproxen ( wanted a lower one for good days), but kind of scary how fast she was writing a script for more serious pain killers. I got it filled, and hopefully it will be a bottle that just sits in the cupboard unused for a long time.  Once I pushed for things to try to try to improve, she wrote a script for PT as well. [side note: I have had my PT eval and have my first session in the pool next week. I will write more on PT after that- but the eval session has me very excited] Time will tell, and hopefully we will get on the same wavelength quickly.

I was very encouraged by the fact that she was excited to have me see an EDS expert in June, and that she purposefully made our next appointment for AFTER that point in time, so she could learn what he thought and take that into consideration for my treatment plan.  Hopefully his words will help shake her out of a "you know we can not cure this" mentality and up into my thought path of "can't be cured, but impact can be alleviated".

All in all, it is nice to have a new rheumy, and I think we might get along OK.

Friday, April 15, 2011

I am a documented mutant !!

I got a call from the NorthEast Indiana Genetics Clinic this morning, they had results of my genetic testing for Ehlers Danlos ( classical type) back from the testing lab.

I am a certified mutant of ColType V ( although in my excitement, I forgot to ask if it was ColVa or ColVb- they are mailing the report to me, so I will find out soon enough). The coolest part ( ???) is that this is a relatively new mutation. They said the testing lab said they had seen it in one other case, but with no details).

The mutation is in the 3rd exon, with a point mutation that changes an alanine to a valine. Sounds small, right? How could that be significant?

Here is an Alanine molecule:

And here is a Valine molecule:

Note that extra branch on the Valine molecule.

Protein Structure is highly dependent on the interactions ( physical and molecular) between the amino acids that make it up. In a molecule like collagen, which is highly dependent on large numbers of proteins correctly lining up and inter-twining to provide correct strength and function, you can see why having an extra piece of a molecule poking out would disrupt the normal strength and function.

In addition to physical problems, a Valine is almost 3 times more hydrophobic than an alanine, which would disrupt the series of hydrogen bonds which normally hold these molecules in their folded shapes and together with each other.

Alanine is by definition an amino acid that is conducive to alpha helix formation, and valine is notoriously a bad alpha helix maker. Other problems with protein folding have been seen with single alanine to valine mutations.

Single point mutations in other genes which result in a change of alanine to valine are found as problems in other syndromes or genetic disorders as well. Things like inherited neuropathy, Dyskinesia,and even an inherited prion disease. I am sure there are others my quick search did not turn up.

Since we now have an easy marker to look for, we will be getting both of the girls tested as well. Their appointment is set for early June, which means no results until July or so.

Thursday, April 14, 2011

My Sweet, Sweet Nemesis

Hello, my name is Nan and I am a sugar-aholic.
It is sad, but true.
Worse, I am pretty sure that Sugar is one of the worst things I add to my body. I know this, yet kicking the habit is insanely hard.
By writing it here, I hope to get back on track.

Not so long ago, I spent three years sugar free, artifical sweetener free, simple carbs very very low.  I know it was the strongest, healthiest, most stable I had ever been.

But when stress comes crashing through the door, the first thing every cell of my brain, every twitch of my body screams for is SUGAR. Not chocolate or anything in particular. There are some times when chocolate is the last thing I want. Sugar straight from the bowl would make my brain happier.

When I was in college and my peers were smoking pot, I would eat a 1lb bag of M&Ms and get a better high.

I recently came across this Video:

Honestly, I was not sure if I should write this off as quackery or take it seriously. People who talk in absolutes set off warning red flags in my brain. But the more I ponder it, the more it rings true in my life.

Then on April 13, the NYTimes tackled the issue as well.

And then I had another EDS'er mention that his pain was significantly higher when he ate higher sugar foods.

Then I started thinking about my life long "seasonal" allergies-- When I was young, I had "chronic bronchitis"- a cough that never stopped and got evil- from sometime in Feb through May and then again in October or so through Decemberish. Some years, it started in October and went straight through to the end of May. My senior year of college, I coughed so hard I separated my ribs ( of course, the EDS helps to explain that a little as well) As I got older, it was diagnosed more correctly as a mild asthma. It has been well under control for a long time, it has been worse the last two years- mostly, I was sure because my stress levels have been higher. The last two weeks, It has been annoying again. I even thought of getting out my asthma meds the other night.

When I stop and think hard about this- the last two weeks, my sugar consumption has been MUCH higher. And my Asthma has been worse. The three years that I was sugar free-- I had basically NO allergy issues-- not even in the high pollen seasons.

So then I think back to those seasonal asthma attacks. Maybe it was NOT seasonal as in external allergens... maybe it is a seasonal sugar intake tie-- October start with my birthday, then Halloween, then the Thanksgiving/Christmas holidays..... quickly followed on by Valentine's Day and Easter. A Candy eating frenzy. After April, there are hardly any other holidays tied to candy... and the fresh veggies are abundant everywhere. Maybe the season that has been triggering my asthma all of these years is the Candy Season.

Something frightening to ponder. If it triggers my Asthma( an inflammation reaction) what other inflammation reactions is it triggering in my already tender body?

The time has come to do battle with this nemesis again- it will be hard for the first 3 weeks. And I will turn into a cranky, whiny miserable sugar craving ball of mammal--- but I will fight through this. I am interested to see what happens to my joint and tendon pain on the other side of this. I started last night by brewing a fresh pitcher of unsweetened ice tea.. I fell down once today, but I am holding out for that as my only falter. Tomorrow, I will falter not at all.

Edits: Here is more information I have found about the ties between the damage Sugar does to collagen-

When blood sugar goes up rapidly, sugar can attach itself to collagen in a process called "glycosylation," or the Browning Reaction, increasing inflexible and inflammation. CRP is not found in foods. However, its levels in the body are strongly influenced by diet.

Diabetics research has found that antioxidants lower this gycosylation. A plus and maybe a reason why VitaminC and other anti-oxidants help with flexibility and aches.

And this on Inflammation ties:

"Sugar and other refined carbohydrates appear to trigger a chemical reaction that creates pro-inflammatory compounds in the body," says Andrew Weil, M.D., author of "Healthy Aging." One 2008 study in The American Journal of Clinical Nutrition found that healthy people who ate a sugar-rich breakfast had high blood sugar afterward, along with increased signs of inflammation.

In an ongoing Harvard Women's Health Study, participants who consumed more high-sugar foods, like white bread and cereal, were more likely to have inflammation and high amounts of bad cholesterol (LDL).

In small doses, inflammation is a good thing. Faced with injury or foreign invaders like germs, our immune cells release substances called cytokines, which help destroy bacteria and trigger short-lived redness and swelling. The problems start when sugar consumption goes from an every-now-and-then thing to a full-blown habit, and inflammation is constant and spreads throughout the body, harming healthy tissue over time.

Studies that link high sugar intake to increased inflammation in the body are troubling, says Mark Hyman, M.D., author of "Ultrametabolism." "Chronic inflammation appears to play a role in heart disease, cancer, and many other major conditions," he explains. "Anything that triggers inflammation -- including sugar -- also triggers disease."

and then this:

Scientists have long linked oedema, arthritis and inflammatory bowel disease with inflammation. Only recently the medical community has implicated the process to diabetes, certain cancers and other unsolvable degenerative conditions. The latest research links heart disease more to various inflammatory conditions than to high cholesterol. Researchers are doing their best to come up with anti-inflammatory drugs and other cures for this inflammation.

Rather than try to find a cure, it might be wise to find out what causes inflammation and stop the cause rather than look for a cure. There are many things that cause inflammation in the body: viral and bacterial infections, surgery, a bruise, a broken bone, allergies, vaccinations, high blood pressure, oestrogen therapy, smoking, obesity, chronic fatigue, and dental problems, among others.

One of the biggest offenders of inflammation is ingestion of sugar. By sugar I mean table sugar, brown sugar, raw sugar, turbinado sugar, honey (even raw), maple sugar, corn sweetener, dextrose, glucose, fructose and any other word that ends in an "ose", barley malt, rice syrup, liquid cane sugar, concentrated fruit juice and others. Don't be fooled by the name organic when it applies to sugar. Sugar is sugar, organic or not, and the following will explain exactly what can happen in the body when you eat as little as two teaspoons.

Thursday, April 7, 2011

That Elusive Inner Peace

One of the stress hormones our bodies release is Norepinephrine ( NE). This is a sibling to adrenaline and works to enhance the fight or flight response. When it is first released, in small amounts, it produces a temporary euphoric high- this is how cocaine works. It can also induce a physical reaction  such as rapid heartbeat, increase in blood pressure and sweaty palms.

Flood some more, and you will start to feel edgy, anxious and restless. Insomnia often follows. Aggressive or Hostile behavior can result. Sleep deprived, senses heightened, even more reactive to pain than normal, this can set you up for an infinite loop of elevated norepinephrine levels that starts to make you feel just a little crazy.

Extreme or chronically high levels of  norepinephrine will induce panic attacks, phobias, inability to focus or think clearly. While small amounts of NE enhance memory formation, too much can actually block the formation of memory, causing cognitive problems.
Some of the symptoms of a panic attack are :
  • dizziness or feeling faint
  • shortness of breath
  • feelings of suffocation or choking
  • numbness and tingling of hands and feet
  • chest constriction and chest pain. 
The most common recommended action to help break this cycle is exercise- burn it off. But for someone who is physically unable ( either temporarily or permanently) this presents a challenge. And for those with chronically high norepinephrine, a little exercise is never enough and too much exercise is interpreted by the body as more stress, and only raises the hormone levels. 

There are some things that are recommended to lower norepinephrine levels, some of which have been successful for me so far, and some I have not yet tried.

  • Medication- if the cycle is sever enough, sometimes the only way to break it is to intervene chemically. If you have tried everything else and you are still suffering, work with your doctor to break this cycle. Drugs like propanol, which block NE or drugs that raise GABA levels can be effective here. 
  • Breathe- deep , slow cleansing breaths slow down your body's stress reaction and over time help it to return NE to normal.  remember that most natural methods are not going to have instant results, like throwing a light switch, they work by slowly breaking the cycle of increasing stress. this one really does help me, but i often find that once I am wound up, it is almost impossible to stop myself and just breathe. I can trick myself into breathing by turning on a very well known song and belting it out loud. It is impossible to not breathe when you are singing out loud. 
  • Progressive muscle relaxation- by alternately contracting and relaxing all the muscles in your body, this works to slow down your system and again slows down the stress response. I know this works, but lately have been prone to muscle cramps and sometimes this sets them off. Doing this in partnership with calming visualizations is particularly a good way to slow things down.
  • Having a calming hobby. this is going to be different for everyone. This is most likely NOT video games or computer games. Remember that what you think during the actively is actually impacting your stress. If you find seek-a-word puzzles mind numbing and relaxing, this might work for you. If seek-a-word puzzles make you frustrated and wishing you could rip pages out of the book, try something else. For some people this is needlework. needlework stresses meme out, more than anything. I am lucky that we are now entering into gardening season. For me, getting some dirt on my hands and between my toes is a very relaxing thing.  If you find weed pulling relaxing, come on over- there is always enough here for someone to help with ;-)
  • Meditation. this is my challenge. Meditation got my through my divorce. I had a stump in the back yard and I would "stump sit" for a while. I had a big rock in a friend's yard- I would go and sit on the rock. I know I need to return back to this practice, but I have not yet found the path. I know it has to do with feeling overwhelmed with things to do, and making my own self a priority- setting other things a side to just be. I will get there by the end of the summer, this is my current goal.  
  •  Massage. this is a big win for me right now. I have found this to be very very helpful. Not only is it slowing me down and relaxing things, but having a myofascial release is lowering my pain levels. While professional massages can be expensive, this does not have to be professional to help.  Having a friend or a loved one give you a massage can make a world of difference. There are tons of learning resources on how to massage available on the web or in book stores.
  • Diet Changes.- apparently lowering the tyrosine in your diet can help. Tyrosine is one of the building blocks that make up NE. Without a plethora of the building blocks, your body can not make as much.  Since NE is actually made from  dopamine, and dopamine is made from tyrosine, lowering tyrosine will impact more than just NE. Since other methods have been helping me, I have not experimented here yet- but others have with some apparent success. If you already do this, or you try it, I would love to hear your experiences.
While elevated NE levels from chronic stress can convince us that we are out of control and hopeless, can increase our aggression and hostility- effectively isolating us from support structures, and can turn our bodies into traitors- there is hope. We can actively combat the effects of chronic pain and stress in our brains and find and maintain that elusive inner peace. When I get there, I will light the candles and shine the light so it is easy for you to find. If you get there first- light a few for me.

    Monday, April 4, 2011

    The Good, the Bad and the Ugly....

    Doctors are like lawmen- some are good, some are bad and some are just plain ugly.

    I am lucky enough to say I have never had to deal with ANY in the ugly category, and so far, my dealings with the Bad have only been second hand.

    My favorite Good Doctor is my neurologist. The one who put up with me being an insanely frustrating patient all last fall and into this winter. I presented as a classic Myasthenia Gravis Patient. Everyone was sure that was what was wrong with me. Even me. When test after test came back negative, he switched to the other likely candidates, and even the unlikely ones. We were to the point of last resort. He went to battle with my insurance company for tests they wanted to deny, when I uncovered the EDS link. EDS was well outside of his area of expert knowledge. He later told me they had a lecture or two on it in medical school and that was all he knew. Although he was starting to mumble about somatization disorder, when I emailed him about EDS, he was excited, positive and congratulated me on my good detective work.

    When I recently had a "last follow up" to basically dismiss me, unless I develop pinched nerves or neuropathy, we spent the entire session with him eagerly learning as much about EDS as he could. He had frequently talked about the increasing number of frustrating cases that had some of my symptoms, or were sort of similar, but no diagnosis could be found. This obviously upset him significantly and now, presented with my data and experiences, he was happy to have another possible tool in his belt and an avenue to explore with some of his other "black hole" patients.

    These are the good doctors. I do not expect any doctor to know everything. It is physically impossible. But the good doctors are willing to learn and change their learned paths when confronted with new information. There are actually a lot of doctors who fall into this category-- they just have not had the exposure to EDS patients to learn. I am not sure why the EDNF does not put together case studies or patients as models on display and actively educate doctors.

    Then there are the bad- a rheumatologist a family member crossed paths with falls into this category, as far as I am concerned. They are a good doctor, bedside manner, etc.. He treats their symptoms and helps with their pain. But when recently asked ( in light of my situation) if the problem could be EDS- he said- Yep, likely, but then wrote down "Connective Tissue Disorder" on the chart instead of EDS. Worse, he then proceeded to tell her that there are "lots of people out there with this- it isn't really rare, but unless someone is really bad we do not call it EDS, or else people freak out". He then also proceeded to tell the story of an olympic gold medalists who he was sure had EDS- as a means of re-assuring her.
    This makes me want to rant in ways that are less than polite. Let me just say that I find this not only immensely patronizing and patriarchal, it also skews all of the research and medical data on the disorder. I agree that this is not a rare phenotype, and it covers a range of expression. But how are people supposed to figure that out unless you show them the real range? If an Olympic gold medalist can have EDS- does he not think this would help and inspire others with the condition? Wouldn't this help to prevent people from "freaking out"? Wouldn't researchers want to study him as well- to see how/why he is different and stronger than EDSers who can not walk? OIY.
    That is enough of my ranting- I would love to hear your experiences or examples of the good, the bad and the ugly in the comments below.

    Friday, April 1, 2011

    Cracking the Pressure Cooker

    Stress kept early humans alive, uneaten.
    Stress can be a motivator, pushing us past our mental hurdles.
    Stress is like alcohol- makes you happy in moderation, Destroys your body in overdoses.
    Stress is insidious.( cue movie trailer ;- 0)

    When we think of stress, we often think of outside pressures- paying the bills, getting a job, raising our kids.
    For some of us stress is also internal- push to succeed, self- expectations.
    What we forget is that stress is also a natural body process, triggered and set off by things we may not be monitoring at all.

    Our Brain, which both controls and is impacted by stress hormones ( cortisol,Growth Hormone and norepinephrine).  And our Brain is still convinced that we are wandering tribes of nomads, hunted by tooth and claw predators.

    Sleep Deprivation? Must be getting chased or on the move for too long, or... something horrible. STRESS.
    Too Few Calories? Must be entering a famine period- STRESS
    Chronic Pain?  Broken. bad. will be eaten.  STRESS
    Too long in one position? movement levels too low? Must be broken, must have an infection- Inflammation and STRESS.
     Afraid? Worried? Must be something  or someone after us. STRESS

    If we were really in those positions, cortisol does exactly what you want it to do, and has kept us live for millions of years. But when modern "realities of life" are misinterpreted as threats, the actions of cortisol produce more damage.  Cortisol, either directly or by triggering other chemicals,  blocks insulin, creating a sort of insulin resistance, stimulates the process that increase blood sugar levels, tells your body to store every bit of extra calorie it can as belly fat,destroys collagen, and inhibits bone formation or even breaks down bone. It increases gastric acid formation, inhibits the immune system and the inflammatory response and touches nearly every other metabolic pathway we have.

    Norepinephrine is involved in mental processes. It assists with focus and memory- in short doses. Too much and the regulatory pathways of the brain get messed up. At first, too much norepinephrine causes mania, increased heart rate and high blood pressure. Since it is also linked to dopamine, after prolonged raised levels it can also feedback and reduce the amount of dopamine in your brain, which can cause depression. It can also impact Glutamate levels, which impacts the pre-frontal cortex and cognitive function. Although Norepinephrine initially increases focus, over time it decreases focus.  End result? You end up either Hyperactive and unable to focus, or depressed, fog brained and unable to think clearly, or some mixed combination of these. Brain soup.

    Here is the real heat in this pressure cooker- Once you have what your body recognizes as a "stress event" ( pulling an all nighter, a weekend of fasting, etc..) the threshold needed to trigger the next stress event is lower. And the next is lower, And the next is lower.  So if you are in a situation of "chronic stress", soon every little wiggle, every little variation is a STRESS.  Worse? It takes a long time for this to level back off.

    So- even if you solve all of your financial, marriage, friend and parenting stresses and you live on easy street, if you live in the modern world that moves fast, is over stimulated, sleeps too little and eats badly? STRESS.

    What a treadmill. Seems almost helpless. Add in any kind of chronic illness that also impacts these things and it seems like an impossible battle. Too much effort. Bend up and go home.

    For me, what it is taking to beat this is to step completely off the mental merry-go-round and scream "enough!!".  

    Don't get me wrong- this is not magical. There is no silver bullet and I am not "all better". I still have days when every little thing makes me want to cry.  I have days when the pain hurts so much i just want to curl into a little ball and give up.  But I can start to see the difference.  In December, I could not remember a list of 3 things. My memory was GONE.  Just a couple of weeks ago, I had some cognitive testing done by a psychiatrist and my memory and cognitive functions came out as superior. It still seemed like more work than it should have been ( my memory used to be effortless), but the doctor told me I scored higher than he did.
    Back in December, it was hard to hold a conversation. From sentence to sentence, I could not hold on to my train of thought.  People could tell me things and four sentences later, I had forgotten.  Now I am back to writing and working. I have started podcasting and am actively job hunting. Socializing energizes me, rather than exhausting me and I can get up in the morning and remember what I discussed the day before.

    So what have I changed?

    • I am trying to get more sleep. From 4 hours a night to a target of 8. I do not regularly hit my 8 yet, but i also sometimes nap.  Almost every night, I get at least 6 hours of sleep. I will get there eventually. 
    • Vitamin B mix vitamin supplement. Not just the 100% of vitamin B in the regular multi-vitamins, but an overdose of Bs, especially B12 and niacin. ( you pee out extra, it is safe). 
    • Increase omega3s in my diet. Omega3s block the release of cortisol, lowering it and buffer the stress level that will trigger the next release. 
    • Distraction. Getting busy and thinking about something other than how much my body hurts and how miserable this all is. This seems like a mental trick, but remember part of the cycle is in the brain. The things you think impact your neurotransmitters. 
    • Making sure I eat well. whole foods, enough calories, a variety. Nothing my body could distort into a mistaken stress signal- especially since it is so "trigger happy" at this point of my life. 
    • Meditation and physical activity- both of which change neurotransmitters in the brain- even in little doses. 

    What is the stress in your life? How can you crack the pressure cooker?

    Most importantly, I know this will be a slow process of small changes- sometimes so small i can not even notice them, so i get feedback from the people around me and my goals are long term. This time next year, I hope to be out of the Stress Pressure Cooker and just merely grilling.

    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?