My Story of Hypermobility and Chronic Pain

When people used to ask me, “What hurts?” I’d find it difficult to describe. For nearly 10 years, I’ve had pain in some form or another in many different parts of my body. I used to tell people that it was like a “traveling demon”, showing up in different ways and different places at different times. I never knew what it was going to be like from one day to the next.

It all began in 2009 when I was just 28 years old.

I’m still not sure what the “trigger event” was, but one day I was leading a completely care-free and “normal” life, and then the next I was catapulted into the world of chronic pain and suffering. It was a hard pill to swallow.

The pain first started as a severe sore throat that wouldn’t go away and devolved into burning sensations throughout my entire body, predominantly on my left side. I was scared, and felt desperate to find out what was happening. I saw numerous specialists including: ENT’s, gastroenterologists, chiropractors, and holistic practitioners — but no one could help me or tell me what was wrong.  Most of them just made me feel as if this was entirely in my head. I was prescribed everything from proton pump inhibitors (PPIs) to anti-depressants to a multitude of supplements. I even did a variety of elimination diets, vocal therapy, acupuncture, and pain management therapy – but nothing helped.

Because all of my tests came back “normal” I learned quickly that this was not going to be straightforward or easy to figure out.

I learned that it was going to be tough to convince anyone that there was actually something wrong with me and realized that I’d have to figure out how to deal with the pain. I tried to lead a normal life and put a smile on my face to my fiancé, friends, family, and coworkers. But, the truth was, I was dying on the inside.

In 2012, I got married and, in short-order, got pregnant with our baby boy. Then, the craziest thing happened — I got better!

Throughout my pregnancy, my symptoms mostly disappeared and I felt normal again. Despite a few “episodes” from time to time, I felt as if I had mostly usurped this demon that had plagued me for four years prior.

In 2015, I became pregnant with our second child, a baby girl. My second pregnancy was pretty wonderful as well, and I told my husband if I could be pregnant forever, it would be the best thing ever!

Things stayed pretty calm until 11 months post-partum when all hell broke loose again. The traveling demon was back—and with a vengeance.

I lost nearly 20 pounds and could not gain weight. I was suffering from episodes of extreme nerve-pain from head to toe, and it felt as if my bones were on fire. My joints started burning, aching and popping, and I generally felt as if my entire body was falling apart. I was having trouble with simple tasks like carrying my children up and down stairs or lifting them into their car seats. I even had an episode affecting  my autonomic nervous system that landed me in the hospital.

The absolute worse part about a chronic illness is dealing with the judgement from others.

You can just see it in the way they look at you. You know what they’re thinking: “She’s gone crazy, again.” (Insert eyeroll)

My family members made comments about my weight loss. My husband was getting tired of hearing me complain. My siblings treated me as if I was only a drama queen. I just wanted to scream – “Just because I don’t look sick, doesn’t mean I am NOT SICK!”

Fortunately, my new general practitioner suggested I go see a Rheumatologist. This started a domino-effect of putting the puzzle pieces of my health back together. One visit to the specialist and I finally had a diagnosis–a severely under-diagnosed genetic disorder called JHS/EDS, or Joint Hypermobility Disorder (Ehler-Danlos Syndrome).  It’s a hereditary connective tissue disorder whereby the body is unable to make collagen properly. As a result, my connective tissue is very “stretchy” or “lax”. It causes everything from fibromyalgia to joint instability and arthritis, to problems with blood pressure regulation, to skin problems and mast cell activation, to heart valve issues.

No wonder it was a traveling demon – collagen is vital to every joint and organ in our bodies!

(Click here for more information on Hypermobility Spectrum Disorders)

Since receiving my diagnosis, I’ve been blessed to find the most wonderful therapists to help me navigate this disorder and finally get me on a path to healing.

The most defining moment was when I was introduced to Denise Schwartz and the amazing practice of Integrative Manual Therapy (IMT). I must say, it has made all the difference for me. The traditional physical therapy aspect of IMT has helped me regain strength, recondition my muscles, and stabilize my joints which has greatly reduced my joint and nerve pain. The manual therapy element of IMT has nourished my body and spirit in ways that have been absolutely vital to my healing process. It’s helped me uncover my triggers, such as food sensitivities and hormones, and helped me improve my poor circulation, adrenal fatigue, and bacteria overgrowth in my gut – all which contributed to and exacerbated my condition.

IMT brings together both the physical and the physiological elements of the body to treat the whole person. Because JHS and related hypermobility disorders are multi-systemic, there are many aspects that come into play and must be examined individually, but treated together as a connected whole.

Over the past 6 months I have made remarkable progress, but my journey is far from over. With IMT as a core part of my therapy, I know I will continue to improve, and I will be forever grateful to Denise for showing me the power of IMT. She has truly given me the opportunity to enjoy life again. Thank you, Denise – you are quite literally a life saver!