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?

2 thoughts on “EDS- what it means to me

  1. Since I live with someone with chronic issues as well, I can relate indirectly. The most difficult part was not knowing. Once we found out, then it was all about understanding and awareness. Glad to hear that you're taking it the way you are (of course, it's not surprising !!! )

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