Published: 16/09/2019

EDS – A Pain in the..…Everything

I’m Sonia, I’m 48 years old and recently diagnosed with hEDS. I recently had to resign from a job I loved. My story is a description of pain, in the hope that others who also haven’t found effective management can relate.

It’s possible I began experiencing pain before I was old enough to remember or articulate. Perhaps that’s why I was ‘late’ to walk? As the years have gone by, pain has escalated and spread like a virulent plague. Progressive deterioration.

With a frequent sore tummy and constipation as a four-year-old, I was declared anxious and uptight; laxatives and a sedative were prescribed. In my teens, further gastrointestinal problems resulted in various investigations and the diagnosis of exclusion, IBS. I reluctantly tried SSRI’s and was surprised to find they ‘regulated’ me for decades. Thirty years on I’ve added delayed gastric emptying with its associated cramping and griping, bloating, nausea, and vomiting.

Countless times I’ve rolled or sprained both ankles, more often than not on a flat surface. Some sprains resulted in tearing, ripping, pain and in deep purple, black, bruising warranting x-rays. A popliteal cyst in the back of my left knee came would come and go between the ages of nine and fourteen. Jabbing, snagging pain with every step or bend. An inability to hold my knees together whilst seated in the front row for class photos. Horrendous shin or so-called ‘growing pains’ at night, preventing sleep. Pain that felt like jackhammers pounding and drilling deep into the marrow of both tibiae. Hot water bottles and aspirin (paracetamol and ibuprofen weren’t available in 70s/early 80s in New Zealand) doing little to abate the pain.

I thought everyone experienced some pain at the dentist despite local anaesthesia! Presumably because I’ve flinched, I was often asked “can you still feel something there?” My garbled response always ignored.

Torturous mid thoracic pain started as a preteen and persists today. Lying on the floor on my back, knees to chest, rolling from side to side attempting to massage pain away. Stuck, as if vertebrae were grinding on each other, nerves pinched. Numerous times I wanted to be put in traction while a targeted needle dispensed effective pain relief. Hanging upside down was suggested on numerous occasions. At the local playground children laughed and pointed as I attempted scaling the monkey bars; I never went back. I bought an inversion table that took up half the living room. It lasted less than a week due to strains from trying to use it. Yoga aggravated all joints and many of the poses resulted in orthostatic hypotension. Countless visits to doctors, physiotherapists, chiropractors, osteopaths, massage therapists.

Physiotherapy is purported to be the mainstay of management however, I’m yet to find one who is well versed in EDS.  Taping from a physio took my skin with it when removed. Only chiropractic and massage have given blessed relief, but only for a few days. My partner, now husband, developed his own version of chiropractic and this has been providing brief relief for 20 years. I still writhe on the floor attempting to escape nauseating pain, trying to ‘crack’ my own back for a few minutes’ peace. Neck and shoulder pain are a regular feature.

Clicking painful hips in my twenties. I recall studying in the silence of the university library. Getting up to go to a bookshelf or bathroom and hearing click, snap … click, snap as I walked. Others looking from their work towards the disruption. Both knees do the same, sometimes locking. I stop short, shake the affected leg and move on. Friends and colleagues would say “Was that you? You’re too young for creaking joints.”

Everything persisted through my thirties. Come my mid 40s, and pain began to spread and escalate. Trouble with my fingers and thumbs started. My middle and index fingers would intermittently get stuck in the wrong place. I thought I could feel a grisly piece of ligament or tendon slide down the side of a knuckle. I’d push it back to where it I thought it was supposed to be. Enormous ganglion cysts appeared and disappeared.

Gnawing pain originating from my lumbar-sacral region and sacroiliac joints presented. Biting, searing, crushing, crippling. If I sit or lie down at the end of the day, I have tremendous trouble trying to get up. I’ll roll part way, reach out for the side table, the wall, then the window sills, door frames. Bent over. Hobble, hobble, cruising the furniture like an infant learning to walk until the seized-up joints, warm up. Both thumbs developed a tearing, searing, glass shard pain. Suddenly lifting an empty kettle became impossible – turning door handles, turning a key.

Tests were undertaken to rule out rheumatoid arthritis, ankylosis spondylitis and the like. X-rays showed signs of osteoarthritis in my thumbs, index and middle fingers, and left hip. Finally, abnormalities! Validation for some of the pain. But my thoracic spine, lumbosacral, and sacroiliac joints were satisfactory. Whatever satisfactory means?! No validation for my worst, most debilitating, and disabling pain and the indescribable fatigue.

My fingers and thumbs worsened despite bracing and splints. Lumbar sprain, rotator cuff tear, costovertebral sprain. Dislocating my thumb pushing a simple on/off button and spraining my elbow doing nothing in particular, resulted in facing my increasing limitations. I resigned. A rheumatologist diagnosed joint dysfunctions at C2/3, T6/7 with left side costovertebral subluxation, L5-S1 and sacroiliac dysfunctions. Medial and lateral epicondyle problems, annular ligaments, both elbows. Medial collateral ligaments of both knees. Right rotator cuff tear. Braces and splints for everything (roller derby anyone?).

Painsomnia. It’s not surprising sleep is disrupted and unrefreshing when trying to roll over makes your skeleton sounds like Rice Bubbles (Rice Krispies in the North Hemisphere) soaking milk and you’re yelping like wounded canine. Rolling over is more like a slow and agonising three-point turn of the bed. Suspected radial neuropathy from lax elbow joints, carpal tunnel. Nightly tingling in my hands despite wrist and forearm brace. Frequent waking with an elbow that refuses to bend against the crushing, penetrating pain.

There’s no escape from relentless whole-body pain. Of course, it’s not just physical pain. There’s emotional pain from the full gamut of emotions – frustration, sadness, anxiety, anger, grief…

The pain of being misunderstood, disbelieved, criticised – by former friends, colleagues, society, loved ones. The pain of being dismissed and invalidated by medical professionals until ’evidence’ appears in blood tests, on x-rays, or a scan. We think of medical conditions as having a beginning, middle and end. We seek treatment, and if we survive, get better. We don’t know what to say to someone who will not get ‘better’. No one really wants to hear about how cruel the reality can be. Therefore, many who are chronically ill feel very much alone. The pain of feeling like a burden. The pain of grief for the lost life as we knew it. The pain of seeing others having fun and wishing to join in. Is this really forever? The pain of fearing the future; will I become more disabled, immobile? How bad will this get? What am I supposed to do with my life? How can I help others despite my limitations?

Like many, I’ve not yet found anything to minimise physical pain. My DNA data indicates abnormal responses to, and reduced effect of analgesics. Emerging research is showing some potential for cannabidiol treating intractable pain, nausea, and a whole host of issues often comorbid with EDS. General practitioners can prescribe Tilray in NZ. I’m waiting to try. Suppliers are out of stock with no ETA. Hot water bottles provide a pleasant distraction but they’ve had to be so hot that I’ve burned myself. When I feel like I can’t keep going, I’ll have a big cleansing cry – pick myself up and carry on.

Yet every night I go to bed hopeful that tomorrow will be a better day. I live in hope.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society bi-weekly newsletter