My EDS & POTS Story

Hi, everyone! All my fellow EDSers, friends, family and those interested in learning more about EDS, welcome back. 🙂 Thank you for your patience, as it has been some time getting this blog up and running, as well as getting myself on a path where I am able to put time and effort into it. If you read the “Meet Dani” section of the blog, you will have learned that I got divorced, though I didn’t want to, but my wife’s mental health illnesses told her she couldn’t make it work with me…and just a short while after the papers were signed, she committed suicide. My life has been a battle ever since.

It has been a long couple of years, and a long 2018-2019 so far. My health has been poor, and I am sure you are all in the same boat, for the most part. It seems with EDS there is a constant battle of trying to cope with so many things simultaneously, that I don’t have a day where I am ever at 100%. Most days, for me, I am dealing with many random issues, and they all take a toll on me. From dislocations and subluxations, to IBS or gastrointestinal issues, to migraines, achy joints, shooting and stabbing pains, bursitis, TMJ, the chronic muscle spasms by my shoulder blades, the irritating pain that accompanies every step I take, the sore fingers, the constant fatigue, irritability, tachycardia, blood pressure dropping every time I move, lack of energy period, blah blah blah….we all know the symptoms. And, for me, they have consumed my life as of late. Especially the last couple of years. We are on a path to do pain pump surgery so life is a little less painful and a bit more enjoyable.

First, I think it will be beneficial to give you a bit of background on me and my journey. My entire life I have dealt with the physical and emotional symptoms of EDS. Whether it was dislocating my knees during dance practice, staying home from school with chronic migraines, having low energy compared to my peers, feeling my heart race every time I took a shower – I had all of these strange symptoms and knew there was something ‘wrong’ with me from a very young age. My family didn’t think much of it, they just knew I was always sick with something, and I was teased for being a hypochondriac. My doctors told me a range of things could explain my symptoms, from growing pains, to stress, to psychological problems. Mostly, I was told there was nothing wrong with me. I knew that wasn’t the case.

With every year came new symptoms or progressive symptoms. Finally, in 2004, I decided enough was enough and I wasn’t going to take ‘no’ for an answer. I set out to find any doctor that would listen, and after a long list and a lot of office visits, I ended up in Dr. Ashu Mehta’s office in Anne Arundel Co., Maryland. He is a rheumatologist, so down-to-earth and calming, and was not only willing to look at my case with open eyes and open ears, but after just 5 minutes in his office, he was clearing his desk and breaking out books trying to get to the bottom of my problems and get me a diagnosis. He recognized immediately that there was something wrong, and his first instincts told him that I had either Marfan’s Syndrome or Ehlers-Danlos Syndrome. We broke out the medical books and he performed the beighton scale test on me to determine if I was a candidate for a hypermobility syndrome.

(see Beighton Score chart here: http://www.shoulderdoc.co.uk/article.asp?article=645)

I scored an 8 out of 9 on the chart, and possessed most of the major and minor criteria listed on the chart. This meant, for certain, that I was hypermobile. From there, Dr. Mehta sent me to the genetics clinic at Johns Hopkins University, one of the leading genetics clinics in the country, and one of the only places that focuses on such connective tissue disorders. This was 2005, and I was seen in the genetics department headed by Dr. Levy. During my time at JHU, I was seen by a team of doctors, residents and specialists. I was stripped down to my birthday suit and was poked, prodded, measured, scanned, EKG, echocardiogram, and brought into a room where my diagnosis was confirmed: Ehlers-Danlos Syndrome, Type 3/Hypermobility Type. All of the other types of EDS, the diagnosis is a bit more specific in that they have narrowed the testing down to a specific gene. They have not yet figured this out for type 3, and therefore, they diagnose off of clinical evaluations, family history, et al. With my diagnosis in hand, I set out to figure out the best course of action. Physical therapy, drugs, doctors and more doctors….The diagnosis was a long time coming, and finally gave me some answers, and also many more questions. This was just the beginning of the journey to where I am today.

In the next few years, I proceeded to follow my heart and attempt some very mild tries at holistic healing/alternative therapy. I also listened to my head, which landed me in specialists’ offices many days out of each month. I tried to mix the alternative therapies (which I was so ‘green’ to) and take the meds that the doctors were shoving down my throat as well. I did several years of physical therapy, which did not help all that much. I slowly got worse as the months turned to years. I went from being in pain only some of the time, to being in pain all of the time. I went from being a flight attendant, to not even being able to work a desk job because of the pain, joint issues, etc. There was even talk of injecting my knees with chicken cartilage, which to a vegan like me, was not an option. I went off of the medicines, which weren’t working, and went on new ones. I wore the braces, I tried the creams, I changed my diet a bit. Between the years of 2007 and 2009, at present, I have seen physical therapists, pain specialists, rheumatologists, orthopedic surgeons, general doctors, endocrinologists, cardiologists, psychiatrists, psychologists, counselors, and then some. I have spent so much money on doctors and medicines, and thankfully, for most of these two years I had decent medical insurance, which helped immensely. But, through all of this, the doctors still have not found a place where I am comfortable and my pain is under control, they haven’t found a way to help that is anything worth mentioning. The medicines just don’t help. My liver is probably terribly damaged from being 37 and having taken so many painkillers all these years. I haven’t found solace in my treatments as of yet.

In addition to the EDS, in 2008 I was diagnosed with POTS (postural orthostatic tachycardia syndrome). For years, I have had ‘problems’ with my heart. For what seemed to be no apparent reason, at random times, my heart would beat wildly fast, as though it were going to explode out of my chest. This would happen a lot when I was showering, doing physical activity, etc., but over the last couple of years it started happening even during my down time. I would be watching TV, reading a book, doing some super light gardening, and all of a sudden my heart would race like it was in a marathon. I am definitely not a marathon runner. While this may sound inconsequential, there was a lot that was happening because of it. First, I would become very dizzy. It would become hard to breath. And, it would wear me out for hours. An episode would last for a couple of minutes, but leave me tired and out of breath, feeling as though I just ran 10 miles, for the rest of the day. It was getting so bad, that I would pass out upon standing, my vision was blurry. As the years went on, this became worse and worse, to the point it was affecting my ability to work, stand for any length of time (concerts, amusement parks, even just the line at the grocery store), my ability to drive, etc.

The POTS has become more of a nuisance than the EDS itself. I have chronic pain from the EDS, but I can’t even stand up with the POTS. After pressing the doctors again to figure this problem out, I was put on a heart monitor for a month, 24/7. They agreed that I had severe tachycardia, but no arrhythmia. The cardiologists sent me to get a tilt-table test at Eastern Virginia Medical School’s heart hospital in Norfolk, VA. They are the only heart-only hospital in the country, and are connected with EVMS’ other facilities, which have been a big help to me over the last couple of years.

During the tilt table test, they did just that – put me on a table, strapped me to it, hooked me up to monitors and raised the table to an 80 degree angle, basically putting me in the position that any person would be in if they did something as simple as stand up. Then, they monitored me and took vitals every 5 minutes. It was obvious right away that my vitals were not where they were supposed to be. I became dizzy. My heart was tachycardic, racing like crazy. My blood pressure was dropping. Everything was getting blurry. I was feeling nauseous. And then, boom: BLACK. I passed out. They dropped the table back down, injected me with something to bring me to consciousness and told me the results: POSITIVE. Just from standing up, simply going from a laying position to a standing position, my blood pressure dropped to 50/30 and my heart rate went up to 173. Yikes!

In the end, I was told I have POTS. It is a side condition that some people with EDS develop. It is likely caused by the stretchiness of blood vessels, lacking the proper connective tissue structure they should have, therefore they are unable to squeeze and push blood throughout the body when I move. Normal people’s blood vessels are constantly compressing and decompressing in order to compensate one’s movements. Mine don’t function properly. Ugh! With this diagnosis, after several trials, my endocrinologist was able to find me some medicines that helped a bit. They didn’t make things perfect, but they brought me from a zero out of ten, to perhaps a four out of ten on the manageability scale. In addition to taking those, I have to be very careful to read my body’s signals, never stand for long periods (take my wheelchair to events where there is a lot of walking or standing), wear compression stockings all of the time (my granny stockings!), and take it easy.

For more on POTS, see my in-depth post on it by clicking here.

With the EDS and POTS taking up the physical side of things, the bipolar disorder and PTSD take up the emotional/mental side of things. I was misdiagnosed in 2007 with having severe depression, but was properly diagnosed later in 2007 with bipolar disorder, mixed episode type. Also, from years of physical, emotional and sexual abuse, I have PTSD (post traumatic stress disorder), and I have only actually been attempting to deal with it for the last two years. I have been on a whirlwind of medicines for the bipolar disorder, as well as to help with the PTSD. I am open about this on my blog for two reasons: I want more people to be aware of mental illnesses and help get rid of the stigmas that come with them, and I want to share my story in case it helps anyone else deal with any of these horrible illnesses. I don’t mind talking about them if they can help someone else in any way.

Along with finding out all of the health problems I have over the last few years, I have also been on a great journey to find ‘me.’ I have become comfortable with myself, at 27 I finally figured out who I was and accepted it, which means I have had ten years of knowing “me”. 🙂 A bit left of center, a bit colorful, and a lot of kind-heart and passion.

To each of you with EDS, may you have a pain-free weekend, or as pain-free as possible. Love and peace to everyone on this beautiful planet. And, thank you for being patient while I situated myself the last couple of years. Now that I am on my new journey, I hope you will join me.

You may also be interested in the following posts:

  1. My Symptoms
  2. Postural Orthostatic Tachycardia Syndrome (POTS)

Lastly, I want to stress acceptance. I accept all of my fellow friends with invisible illnesses, regardless of what treatment routes you take. I do not judge you for taking drugs over holistic medicine, or for using diet instead of pain killers to treat your pain. Every person has to find what works for them. I would only hope all of you feel the same about me and my path, whether or not you agree with it. And, as an ever-changing and growing person, I am always open to suggestions or questions, so long as they are respectful. It’s such a beautiful thing when we can all work together to help each other find solutions.

With all my love,

xo
dani

Artwork by Rachael Brady

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