Morristown EDS Support Group Articles

In this section, EDSers share topics, such as: local awareness activities, personal experiences and how EDS affects their daily living.

 

This is Alexandra’s story: 

I moved to America from England around 4 years ago now and recall being struck everyday by our different cultures.  It was refreshing to encounter a different way of life and each day presented me with another anomaly or amusing tale of our many differences.  I kept promising myself I was going to commit it all to paper “one of these days.”  In fact, I now muse upon how Life often ends up being “one of those days.”  Our work, our busy lives, our sometimes mundane life takes on a whole new meaning when your health is called into question.  Now I long for that “mundane, normal” life again yet feel incentivized to do all of the things that I promised myself I always would.  How many times have we read how a life-altering event shaped the course of someone’s life or radically changed their future.  And I guess it is always different when it happens to you or to a loved one. It’s hard to truly grasp a situation until you are living it.  As they say “never judge a person until you have walked a mile in their shoes.”Being diagnosed with Ehlers Danlos syndrome (EDS)  left me feeling different, sad and frightened – a tumult of emotions.  And angry.  I was angry at myself and at others for having missed it and I kept re-playing over and over again how my major injury and path to discovery came about any how I wished it could have been different.  It also makes me want to be part of a collective.  Now I have walked these steps to a diagnosis, I am eager to hear other people’s tales, to understand this illness, to have someone to talk to who will understand our challenges. We all need to belong in this world.  I recall talking to a taxi driver, here in the US, who was ruminating on the subject of “tribes” and how we, as humans, need to be part of a tribe whether through religious or spiritual beliefs or professional associations but that people ultimately group into clans.  It resonated with me because part of identifying, what I see as a new life in many ways for me, is to find others like myself.  This is when I realized that EDS is a little known and sometimes little understood disease of the connective tissues and as we know tissues make up 90% of our bodies so that means literally anything can happen.  And to know others are there to experience it with us and to support each other can make all the difference. After all the true way to soften one’s troubles is to solace those of others.Nearly everyone I have spoken to has reported a particularly stressful or traumatic build up to their diagnosis, a time when they were really pushing themselves and their body was physically reaching a limit.  It is almost as if the disease is “activated” or taken to a new level.  Stress definitely exacerbates the issue.  And then all the pieces to the mysterious jigsaw start to slot together.  Getting a diagnosis seemed to me to be both a blessing and a curse.  It’s great for your “health anxiety” to have some validity assigned to it but suddenly you are set apart from everyone else and the hardest part is acceptance and fear of how you might end up.Eight weeks ago my neck, which I had been pulling for years, (and always resolved within a week) caused me pain again.  I had started doing Insanity weight classes and then spent one Sunday trying to lift heavy garden furniture alone.  I had radiating pain down my right arm but I seemed to have always had a high pain tolerance.  Last year, I was slightly breathless and went to hospital for an MRI only to find I had a pleural effusion in my lung.  So I went for another MRI, this time of my spine, and found 8 bulging discs in my thoracic mid spine and annular tears and prolapsed and bulging discs in my neck as well as product change at C2&2 of my cervical spine, movement of the odontoid peg in my skull and a Chiari Malformation.  Now all the pressure headaches were starting to make sense. And the wrist weakness and ganglion cysts that came up while I think of it.  My knees hurt too and often feel like they are going to give way. I used to “click” my knees into place as a child when riding my bike but thought nothing of it.  When I look back, I always felt very protective of my body.  I hated injections to the point of a phobia, would bruise easily and generally felt a strange anger if people tried to prescribe me drugs or wanted to take blood or “hurt” my body in any way.  Looking back, my best friend commented that maybe your body had a strange intuition that something was not quite right and it instinctively wanted to protect itself. I really do believe that.Whilst devouring a whole host of medical papers, I also read that our brains are potentially wired differently.  It has been noted that while emotional/behavioral distress is quite common in various EDSers and significantly contribute to disability, the relevance of psychologic/psychiatric features and their likely relationships with the underlying pathophysiology are “generally overlooked in the management of these patients”. There was a study undertaken of 48 EDS patients.  Lumley et al. detected a high rate of anxiety, depression, anger, and interpersonal concerns.  They found that even though, psychological difficulties may be secondary to chronic pain and disability, ostracism, and avoidance of relationships, an organic contributor may coexist. In other words, that our brains REALLY are structured differently and that it is not just about being overly emotional because we are distressed by our illness (http://www.medscape.com/medline/abstract/7856639Accordingly, Eccles et al. described greater “amygdale volumes” in reportedly hypermobile subjects.  Additional findings included “decreased volume of anterior cingulate and parietal lobe.”  So I looked up the “anterior cingulate” part of the brain and found that if you have less grey matter in this area of the brain it may translate into an over-emotional state, an anxious demeanor  and often demonstration of (Obsessive Compulsive Disorder (OCD.)  I don’t know about other EDS patients but I certainly have OCD!  Meanwhile” higher amygdale volumes” can present with an increased emotional state and more social connectedness.  It also demonstrates itself via higher emotional intelligence.  Interestingly, I found that patients suffering from bi-polar often present lower amygdale volumes. “Amygdala volume correlates positively with both the size (the number of contacts a person has) and the complexity (the number of different groups to which a person belongs) of social networks.  Individuals with larger amygdalae had larger and more complex social networks. They were also better able to make accurate social judgments about other persons’ faces. It is hypothesized that larger amygdalae allow for greater emotional intelligence, enabling greater societal integration and cooperation with others”
 

Other interesting facts about EDS  is that proprioception is permanently impaired in patients that suffer from joint hypermobility or EDS.  So something as simple as our ability to balance.  So keep practising those tree poses with your eyes closed! 🙂 ((http://onlinelibrary.wiley.com/doi/10.1002/acr.20557/full))  And lastly, Dysautonomia (or autonomic dysfunction, autonomic neuropathy) is a condition in which the autonomic nervous system (ANS) malfunctions.  So you can expect a whole variety of things from this which I know I have ie increased thirst and perhaps excessive sweating or the opposite.  And of course Irritable Bowel Sydrome (IBS) is in there also! http://en.wikipedia.org/wiki/Dysautonomia) I am wondering if any centres in the US are testing for brain pattern differentials linked to EDS?

 
 I am also convinced that high testosterone “saved” me for all these years.  In another medical treatise I read, EDS presents less in male subjects due to the level of sex hormones and, therefore, greater joint strength and muscle tone (http://edsinfo.wordpress.com/2014/05/14/testosterone-replacement-in-chronic-pain-patients/comment-page-1/ / 
I was diagnosed with polyovarian syndrome when I was in my 20’s and had unusually high levels of testosterone as part of this.  It was lowered when I underwent IVF and then the weakness and the issues commenced.  My mother also reported a large decline after giving birth to myself and my sister as pregnancy is known to sometimes eradicate polyovarian syndrome through hormonal changes during pregnancy.  My mother has never heard of EDS and just thought she had a back back, needs knee replacements, went deaf five years ago and has weak wrists due to general ill health?! Unwittingly, she may have lowered her testosterone levels as then her back issues got notably worse. This ties in with a study by Dr Nielsen that I recently read from Cincinnati Medical Center “ DeMystification of Ehlers Danlos Hypermobility Type”  which notes a similar finding which has not yet been proven.  I was also given high levels of estradiol (oestrogen) during IVF and was unfortunately hyper-stimulated and my oestrogen levels reached a critical point.  This is when the pleural effusion also occurred – weaker tissues resulted in de-stabilization. 
 
I also happened to drive long distances to New York each day for work (4 hours a day) and would arrive home with terrible neck and back strain.  I have driven all my life but this time it really seemed to effect me.  Again, I have read studies that prolonged driving and the vibrating movement against the joints for prolonged periods can cause spondylosis of the spine.  (http://www.laserspineinstitute.com/articles/foraminal_stenosis/foraminal/474/?v3)  So with weakened tissues and crazily long car trips I believe the issues commenced.  So could testosterone therapy provide relief for fellow EDS sufferers if administered after puberty when the hormone levels change?  

My actual diagnosis of Ehlers Danlos type III and type II came whilst I was in the UK.  My odontoid peg movement was not discovered in the US as apparently a laying down MRI can mask any movement as when laying down it will often slot back into place. My Chiari Malformation presented differently also when laying down.  So how many more people might have “indicators” that are being missed because they did not have an upright scan or a dynamic upright scan which can see a spine in flexion to detect “normal” ranges.  This is how the UK doctors found my markers. Vitamin d deficiency is another one which was found during IVF blood counts (https://www.chronicpainpartners.com/doctor-speaker-series/)  scarring on my face, lax skin on knees.  I would like to ask how many other people also carry the cystic fibrosis gene?  Apparently asthma sufferers are prime candidates for carrying this gene.  I am an asthma sufferer.  When you list off all these signs I almost feel like a hypochondriac again but then I realize I just want to be educated and informed.  If Ehlers Danlos is as rare or rather as mis-understood as it seems to be and we can help to change this, then we give value to ourselves everyday by helping others. Cincinnati Medical Center says the estimates are 1 in 10 or 15,000 but they believe the reality is 1 in 100 to 1 in 500 (see Dr Nielsen paper above for the estimates.)
 
Well if I can help to raise awareness across England and the US and bring these two together then I would happily try. There is always research underway in England in terms of this illness and on the NHS (National Health Service) EDS is better understood as teams of doctors ie rheumatologists, geneticists, endocrinologists, neurosurgeons would come together if treating a particular patient as they all need a say and it needs to entail a multi-disciplined approach.  Now if you pay privately in the UK then this “assembly” do not come together so the support structure changes and you need to bring them all together yourself.  The only place I am aware of in the US where this may occur is at the Center for Clinical Care and Research at GBMC in Baltimore (http://www.gbmc.org/adultgenetics)  But maybe we can have more of these centers in other states in the future if we spread the message. Patients need a holistic approach.  After all it is one thing trying to deal with this illness alone but then having to navigate and find your team of specialists (also depending on your State) is a minefield and a job in itself.  We need to be taking it easy! 🙂 
 
Something, I am seeing time and time again is that this is a community of fighters and kind people.  People who are hard-working, eager to share their stories and help others and in this world however kindness and compassion blossoms, they are always wonderful virtues to cultivate.There was a quote from William Shakespeare’s “As you Like It”  which I thought was particularly apt when we are fed up with our bodies! 🙂

Sweet are the uses of adversity;
Which, like the toad, ugly and venomous,
Wears yet a precious jewel in his head…

 

 

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