Thinking Through Nerve Dysfunction

Ehlers-Danlos Syndrome is painful. All over. All of the time.

Rather than looking for a specific spot, injury or motion to relate it to, take a step back and think about laws of physics and joint structure.

Laws of physics dictate that the pull of gravity will keep pulling 'parts' to the center of gravity. In joints without hypermobility this is a good thing as it allows people to stand upright and move through the world.

In people with hypermobile connective tissue, it means that the gravitational pull will put pressure on any tissue/structure between the 'part' and the center of gravity. In the leg for example, the thigh bone will put pressure on the tendons, ligaments, cartilage, bones, skin, muscle, blood vessels, etc between it and the center of gravity depending on the individual's posture. Most of those tissues have nerves in or near them. So the result may be as varied as unexplained bruises or pain.

The nerves are confusing because, oftentimes, while the individual is sitting, for example, the pressure exerted may cut off the nerve's communication with the brain. When the individual stands up, the communication may be restored quickly or slowly, depending on a lot of factors (time sitting, position, quantity of tissue impinged, etc). So it is possible for the individual to get up, walk around and a few minutes later think "Ow, why does my knee/thigh/ankle/hip... hurt?" because they can't connect the pain to a specific trauma/injury.

Repeating that process throughout the body over a period of time creates confusion in the brain as to why these 'illogical' signals of pain keep coming in. The brain responds in a variety of ways. It may become hyper-aware, thus amplifying pain signals for micro traumas; i.e., paper cut, weight of a blanket, clothing seams on the skin,etc... The brain may choose to ignore pain signals unless they last a longer period of time which may lead to more serious injury; i.e., burns, hematomas, collapse, fatigue, etc...

Thus, there are lots of people with EDS/HS with secondary disorders; i.e., Fibromyalgia (FM), Chronic Fatigue Syndrome (CF), Reflex Sympathetic Dystrophy Syndrome (RSD), Complex Regional Pain Syndrome (CRPS), chronic pain and general unexplained neuropathy. There are also a higher proportion of people with EDS/HS that have comorbidities of things like Chiari Malformation, Tethered Cord Syndrome and arthritis than in the non EDS/HS population.

Easily Distracted

There is so much going on around me that I am in awe and admire it all to the point that I get off track from writing, emailing and bookkeeping.

Time to figure out a schedule and re-prioritize some things.

Caring for Q, who is in pain due to her back problem, is pretty high up on the list right now. Tomorrow I have to decide whether or not to take her in for a prednisone shot to bring the inflammation down and, hopefully, relieve her pain. If this works, how long with the benefits last?

“He who has health has hope, and he who has hope has everything.” — Arabian proverb

In my teens and early twenties it seemed like every doctor I went to added to the growing list of things I could not or should not do because of Ehlers-Danlos Syndrome. It seems that those who don't have hypermobile joints don't think it is advisable to try anything that could stress those joints, risk injury or worse. Oddly, I preferred those responses at the time to the other responses I was getting that my pain was in my head, I was exaggerating it or that I was self mutilating for attention.

Even though I was in pain. Even though I was using braces, splints, crutches, a walker, a wheelchair, compression garments, painkillers and/or supplements, I had hope. Hope that the next test would show something easy to fix was the cause of the discomfort. Hope that the next treatment really would make the pain go away. Hope that the next doctor would truly listen and care. Hope that the next splint or garment would be comfortable AND beneficial.

In my thirties my hope was whittled away by healthcare providers dismissing me and my predicament for a variety of unreasonable excuses. Sometimes saying that my symptoms were something that I'd have to live with. A few providers simply said my symptoms couldn't be addressed by their skillset (i.e., I'm a surgeon and you are not a surgical candidate). As I was able to do less and less physically, I eventually had to stop working for a paycheck. I lost my identity as a professional working person. I felt like a lost, lonely, unimportant, insignificant person now burdening others with the expenses for my care. Looking back I see that I was losing Hope.

My body was falling apart when one of the best doctors I ever had told me I needed to rewrite my job description to include physical therapy exercises, time with family and friends, maintaining a healthy diet and finding the joy of every day. At the time I was angry that everything I was had to stop and be recreated. Looking back, I see that this wonderful caring physician actually laid a solid foundation to restoring my Hope.