Guest Voice: Changing my treatment plan resolved years of EDS symptoms
It took 25 years for this writer to be diagnosed with hypermobile EDS
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Note: This column describes the author’s own experiences with pregabalin and nortriptyline. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
In the end, it took the way that my daughter and I stood, plus a little bit of luck, for me to be diagnosed with Ehlers-Danlos syndrome.
A genetic counselor, who had just been working with a patient who had hypermobile Ehlers-Danlos syndrome (hEDS), commented on how we were standing with one knee crossed behind our other leg and asked if I’d ever heard of the condition. I told her no, but this suggestion, along with a little bit of research, led to a final diagnosis.
Thinking back to when I was a child, I remember how my thumb could not only bend forward to touch my wrist, as it does in the hEDS physical exam, it could also bend backward and touch my wrist. Back then, parents just thought of it as a funny trick their kid could do. Today, many would be all over it, trying to figure out what was wrong. It was a different time.
I read that the average time to an Ehlers-Danlos diagnosis is 10-12 years. For me, it was roughly 25 years. Twenty-five years of seeing numerous gastroenterologists, primary care doctors, physical therapists, and chiropractors, among others. None of them thought I might have an underlying, full-body issue. But after my diagnosis, it all made sense.
Before I learned I had hEDS, I was diagnosed with small fiber neuropathy. The condition is common in the hEDS population, but back then, the doctors were confused about why I had it because I didn’t meet the normal criteria. At first, they put me on pregabalin to help with the nerve pain, though it did nothing. But I knew someone who was dealing with similar issues and taking pregabalin and nortriptyline, so I asked my doctor about the combination, and they approved of me trying it.
Once I added nortriptyline to my treatment plan, my gastrointestinal issues, which had been a tremendous burden my whole life, cleared up almost immediately. I had tried numerous medications, undergone two colonoscopies, and experimented with every diet imaginable, all to no effect. I’m 5 feet, 11 inches tall, and the most I’d ever weighed was 160 pounds.
Within a month of adding the new medication, I reached 190 pounds, and the weight went everywhere — my legs, my arms, my shoulders. I was finally the build that I probably should have been all along. The burning sensation and joint pain in my legs and feet from the small fiber neuropathy went away within the first month.
Spreading awareness
As disappointed as I was that my doctors couldn’t identify hEDS sooner, I also feel that physical therapists should be more informed about the condition. If they come across patients like me who are double-jointed and dealing with a lot of joint pain, they could suggest seeing a specialist who could explore a possible hEDS diagnosis. I hope the Ehlers-Danlos community agrees, and that we can raise awareness among the physical therapy community.
Part of the reason I’m writing this is to let people in the hEDS community know that there are others out there who share the same struggles: the countless doctors’ visits, the looks that suggest you’re a hypochondriac, and the treatments and advice that caused more pain (no, thank you, high-arch-support shoes).
The other reason is to share the medication combination that’s changed my life. I hope this story is helpful and relatable to members of this community.
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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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