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....

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.

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.:

houseandgarden

 

houseandgarden

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.

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.

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.

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.

Background:

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.

2)

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".
Not.

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?

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.

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?