The hardware side of anxiety

IMG_5311The biologist in me has been quietly battling for a different perspective on anxiety these last few months, and when Brain Pickings did a feature on Anxiety, it seemed the time to get a little noisier about it.

In the article, Stossel   starts to do a great job explaining that Anxiety can have many origins:

“The truth is that anxiety is at once a function of biology and philosophy, body and mind, instinct and reason, personality and culture. Even as anxiety is experienced at a spiritual and psychological level, it is scientifically measurable at the molecular level and the physiological level. It is produced by nature and it is produced by nurture. It’s a psychological phenomenon and a sociological phenomenon. In computer terms, it’s both a hardware problem (I’m wired badly) and a software problem (I run faulty logic programs that make me think anxious thoughts). The origins of a temperament are many faceted; emotional dispositions that may seem to have a simple, single source — a bad gene, say, or a childhood trauma — may not.”  

But although he mentions the hardware problem, it is more focused on the concept of a brain/CNS hardware problem- not a whole body one.  But the truth is, that there are a multitude of folks, many unknowingly, suffering from a whole body problem called Dysautonomia.   In an attempt to simplify a vastly complicated body mis-function, Dyautonomia is the result of the body’s Autonomic Nervous System ( ANS) being out of alignment.  The ANS controls core bodily functions ( digestion, heart beat, breathing, etc.) as well as the Fight or Flight reflex.  The ANS is controlled by hormones that circulate throughout your body in response to feedback signals, as well as feedback from the Central Nervous System ( your thoughts, fears, and dreams).  The fight or flight response is so critical to our survival, that it can also be triggered by the CNS- think scary, anxiety laden thoughts long enough and your body will react- producing the very real fight or flight response.

It is true, that there are some folks with GAD and their anxiety problems are CNS related ( either hardware or software). For those folks, the continued development of therapies and  CNS impacting drug therapies is crucial.  but if your Anxiety is ANS based, those CNS drugs will at best dull or mask your symptoms- in many cases they have no impact, or even worsen the anxiety.  No wonder drug trials get results that are so messy and confusing!

So how does ANS Anxiety work?  This is the kind of anxiety that in a balanced body, saves your life- a growling dog or a man with a gun threaten you, and your body secretes a cocktail of hormones that alerts your brain and prepares your body for a response.   In folks with Dysautonomia, part of their hormones are misaligned or mis-respond, and the brain and body are alerted to threats which do not exist in the real world, but are phantoms of hormonal patterns.  The important distinction here is that with ANS Anxiety the root cause is the chemical soup in your body, which trigger thoughts– NOT the thoughts in your brain triggering changes in your body. In CNS based anxiety disorders, if you impact the thoughts/behaviors/chemistry in your brain ( with therapy, drugs or some combination) you can calm the trigger of the anxiety and the body reactions fade.  If you take CNS drugs for ANS anxiety, it might dull or mask the CNS reactions to anxiety, but your hormones are still fluctuating and your body is still attempting to prepare for a fight or flight situation.  In some cases, the masking of the CNS response to the body’s hormones may act as a negative feedback,causing the body to secrete even more anxiety inducing hormones in an attempt to “wake -up” the brain- thus increasing anxiety, rather than decreasing it.

If your Axiety is ANS Anxiety, the only thing that is really going to make it go away is to treat the dysautonomia that is the real root cause.  Because there are many potential causes for dysautonomia, there are also many potential treatments. It is important that you work with your physician and/or medical team to find the balance that works for you.

For some folks ( I am one of these lucky ones), staying in balance is as simple as increasing salt and fluid intake.  For others, it may mean other diet or lifestyle changes and/or medications.

Beta blockers have long been used to treat what is considered the “physical side” of  anxiety ( where the anxiety is still considered a  psychological disorder only), it is proving more and more to be an effective treatment for ANS based anxiety as well as other effects of dysautonomia.

Dysautonomia can have many causes- from genetic Familial Dysautonomia  and other genetic disorders like EDS to other medical problems such as  COPD and severe Asthma. For more information on Dysautonomia beyond the links in this post, there is a list of Dysautonomia organizations whose sites you can peruse.  Most importantly, if you are talking with doctors and/or therapists and struggling for a solution to Anxiety, ask the question – is my Anxiety CNS or ANS- and hopefully this will lead to a successful treatment more quickly.

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.

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.