Hello World! It’s been a long while, and on top of that long while, we’ve had holidays, health issues, and a new year. As you can guess from the post title, pain has been a number one factor with life recently.
See, I’ve always had a certain amount of pain growing up. Foot pain (flat feet, and surgery to remove extra bones they thought were causing pain), which the doctor said caused me to not walk quite right, so of course I would have some leg and lower back pain. It was also dismissed as growing pains, and I went to the chiropractor in my early tween and teen years to get myself popped back into place. Jump to 2017 when I finally had surgery for plantar fasciitis, which seemed to take away about 75% of my foot pain. You would think with less foot pain, I’d have less pain everyplace else when I walk. Not true!
A battery of blood tests show no inflammation, and I don’t seem to swell up, so inflammatory arthritis and other auto immune disorders were put on the back burner, and the diagnosis of Fibromyalgia entered my life.
I don’t like this diagnosis. There has to be more of an explanation as to why I hurt so much. I wake up with hands so stiff and sore, that I no longer write stories or do journaling. I had stopped this blog. I can’t work out without pain. How can I lose weight if I can’t move?
So I listed out all of my symptoms that I can remember as a kid, along with all of my symptoms that I have now, and started down the information highway looking for answers. In my quest, I came across a connective tissue disorder called Ehler’s – Danlos Syndrome (EDS). Certain things seemed to fit, so I brought it up to my doctor, who in turn acted like I was crazy, and that my anxiety/depression was to blame for thinking I had some rare disorder.
I continued my research, and during a well-child checkup for my two youngest daughters, I brought up the question of when can hypermobility become an issue, because all four of the girls are very bendy. The pediatrician started examining, and he admitted that he is unfamiliar with EDS, but it is similar to Marfan’s Syndrome, and he knows a little bit about that. With the hypermobility, and my husband’s family history of having abdominal aortic aneurysms, he wanted to error on the side of caution and start the process of figuring out if they do in fact have some kind of connective tissue disorder. They are now slated to see a cardiologist next month, and we will figure out where to go from there.
Armed with the pediatrician’s concerns, I followed up with my doctor, who still probably thinks I’m crazy, and wouldn’t go over the EDS checklist sheet with me. He simply said we’ll start out with an echocardiogram and abdominal ultrasound, and see. As for the the stiffness and soreness of my back and hands (and frankly everywhere else), he said since I’ve had it this long, we will just wait and see what these tests come back with, and then when I see him next time maybe we will get x-rays. Not the greatest answer, as I’d really love to have better use of my hands (he thinks maybe it’s carpal tunnel), but it’s a start.
The takeaway, is to always advocate for yourself if you feel there is an issue that needs addressed. This year will be a long year filled with a range of tests for the family. I never realized that this amount of pain wasn’t normal, since it is something I’ve always had an been able to push through. Hopefully we find answers!