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by Julie F.
I never do know where to start when it comes to my EDS journey and of course, I am sure that my story will become very long winded and still not even cover what I have to say.
I began to have aches and pains around the age of 25 as well as GI pain, headaches and ringing in my ears. Doctor after doctor couldn’t see any reason why I would have this pain but would suggest that I got more exercise (yoga was a favorite of many physicians), more sleep, and to meditate. The pain was better some days and worse others and I just learned to live with it. I actually had one doctor write out a silly prescription stating that I get “daily massages from husband.” While I appreciate the lightheartedness of this, I felt as though in some way my pain was silly, or unimportant; just a bit of tension that could be taken care of with a simple back rub. I muddled on and years passed until I became pregnant with my daughter.
Following the birth of my daughter, my body seemed to feel much worse. The pain in my neck and upper back was excruciating, I was tired and dizzy, had numerous stomach issues and suddenly felt as though I couldn’t regulate my temperature. I had no tolerance for heat and would instantly feel more pain, and more exhaustion. Every day that I woke up I felt as though I was hungover or had the flu. As a matter of fact looking back, it had been years since I could honestly say that I felt “good.” Back to the doctor I went.
First stop was primary care. Of course, I was a new mother so this must have all been postpartum issues and antidepressants were in order. The pain didn’t go away, neither did the other issues so you know what?… UP THE DOSAGE!!! Clearly, none of this was helping but he did refer me to rheumatology. I had high hopes for this visit but those hopes were immediately dashed. The doctor listened to my story, took notes, examined me (no tender points, can’t be fibro!) and then said something I will never forget.
He told me that I was looking for a connection between my symptoms that simply didn’t exist. He then said that I may just be wired to be in pain more than other people. What does that even mean?
More doctors, more disappointment. One doctor told me that I was an “enigma” and suggested therapy. Eventually, I was referred to the spine clinic. The doctor here pointed out that I was hypermobile. Finally getting somewhere. I ended up back at rheumatology for a second opinion. This doctor reiterated the statement on my hypermobility and commented on my soft velvety skin, then recommended I get an ECHO, which showed Mitral valve prolapse as well as general “floppiness” in my heart.
After meeting with a new primary, I requested to be seen by a geneticist. I waited almost a year and was seen by a doctor that didn’t even take her purse off of her shoulder during my visit. She spent more time looking at the computer than me then ordered some lab work. All that I learned from that appointment was that I was low on vitamin D. I had actually requested to see this doctor when originally my referral was for a different geneticist. Luckily that original referral was never canceled and I got a letter with an appointment to that geneticist. At this visit I was hopeless but, hey, it was worth a shot. He asked me many many questions about my family and my own symptoms. He had some students with him that seemed to notice that I was sitting oddly. He examined me and made me do all the fun tricks we have all done. Touch the floor, thumb to the forearm, check for the thumb sign. Then he sat down and began to tell me about hypermobile Ehlers-Danlos syndrome.
I cried all the way home. I wasn’t crazy, I wasn’t exaggerating. My pain was real and there was a reason for it.
Since the diagnosis, my life has become lots and lots of physical therapy, hot and cold compresses, and pain medications when I am at my worst. I have all sorts of fun stuff going on in my spine. I have since found out that I have orthostatic issues as well so I am on a high sodium diet with lots and lots of fluids. That tilt table test wasn’t very much fun at all. I have been exploring my GI issues. Life is different now. There are good days and there are bad days. I am lucky to have a very supportive husband but EDS still takes its toll on the relationship. I appreciate everything he does for me but I hate that he has to do it. I inevitably end up doing more than I should and paying for it which frustrates him. I find myself mourning the life that I wish I could live as if something has been taken away from me. I will likely not have any more children and am currently taking a break from work. I fear the future and worry about the growing limits on my daily activities. On the plus side, I am learning to take better care of myself and to put myself first.
I wish there was more awareness for EDS. I find myself having to explain myself everywhere I go, to doctors, friends, and family members. Even those close to me don’t fully understand it. I am lucky enough now to have found a doctor that has a good understanding of EDS and consider myself lucky for having found a diagnosis. With that said I think that it is unacceptable that I was made to feel as though it must have been just all in my head the same as many other EDSers. There needs to be more education and more awareness so that people with EDS are both properly diagnosed and properly treated. My daughter doesn’t have a diagnosis yet and she is still very young, but I have a feeling in my gut that she is a zebra as well. I want her to have a better experience than I did and I want to know that there will be more and more doctors with an awareness of the disease. I guess for now I will keep trying to spread the word one person at a time.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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