Kayleigh H.

I worry more each day about my deteriorating condition

My name is Kayleigh Hennessy, I’m 25 years old and originally from Carlow town. I now live Dublin where I work as a Music Teacher & Administration Manager. 

My health problems started when I was about 10 years old, when my doctors diagnosed the “severe headaches” that had been occurring far too frequently, as migraines. Since then, my list of medical complaints has grown extensively and the answers as to why I’ve been suffering have been few and far between.

To get an idea, in as short a breakdown as possible, have a look at the list below.

Age 10 - Diagnosed with Migraine.

Age 12 - Mystery pain in right wrist; no breaks/fractures found upon X-ray, no arthritis detected, remained undiagnosed. Painful growth removed from just under my ear - diagnosed as hormonal growth, thankfully benign.

Age 13 - Inability to walk properly due to severe pain in hips; no breaks/fractures found upon X-ray, no arthritis detected. GP concluded that hypermobility was causing my hips to subluxate as I walked. Said that it should lessen over time as I got older, but it was nothing to worry about.

Age 16 - Chronic UTI’s began. Referred to a Urologist at age 17, seen approximately 1.5 years later. Still awaiting follow up from initial exam. Diagnosed with Anxiety and Depression. Referred to Psychiatry and added to waiting list for CBT, seen approximately 2 years later. Diagnosed with Vitamin B12 deficiency.

Age 17 - Severe abdominal pain began. In and out of A&E multiple times throughout the years, each time sent in with suspected appendicitis; appendicitis was always ruled out, I was given painkillers, sent home and told to return if the pain got worse. I returned when the pain got worse, and the process repeated itself over and over. My last visit for this problem was approximately 1.5 years ago.

Age 18 - Sciatic pain started, and continues to happen frequently to this day. First ankle subluxation, severe ligament damage.

Age 19 - Two ankle subluxations, more ligament damage.

Age 20 - Migraines became chronic. Referred to Neurology, seen 4 years later. No follow up after initial appointment as it was deemed unnecessary. My migraines remain chronic despite numerous diet/lifestyle changes and preventative medications. Also at age 20, my anxiety and depression reached an all time high rendering me unable to attend college. I repeated my final year in order to attain my degree. Another ankle subluxation, more ligament damage.

Age 21 - Investigative laparoscopy to query endometriosis as a cause of the chronic abdominal pain. No evidence of endometriosis found. A&E visit for further abdominal pain and blood in stools later that year. Blood tests returned clear, sent home with no follow up.

Age 22 - Elbow dislocation due to hyperextension, ulnar fracture, ligament damage. Growths on fingers, toes and elbows appear; thought to be warts, chilblains (despite warm enough weather), or viral infection - no definite diagnosis given. They disappeared after a few months, but have returned many times.

Age 23 - Widespread joint pain worsened. Severe abdominal pain still happening intermittently; at this point I had given up going to A&E and started to just wait the pain out. Extreme discomfort and bloating upon eating/drinking anything (even water). Continued presence of blood in stools. Referred for a colonoscopy. Seen after 2 years. Severe dizzy spells began; I’m standing still but everything around me is spinning and then suddenly I’m on the floor. CT scan was clear, sent home, no follow up.

Age 24 - Loss of feeling in left big toe for 3 months, wrist pain (both wrists) arrived and never left. No signs of swelling. No sign of Arthritis in X-rays/bloods. Pain became more widespread; wrists, elbows, shoulders, hips, pelvis, knees, feet, toes (joint pain) as well as increasing frequency of shooting pains and “growing pains” in limbs. Referred to rheumatology to query Fibromyalgia.

Age 25 (Now) - Colonoscopy completed; diagnosed with severe IBS. The consultant is unhappy with my progress since the procedure and I’m awaiting an appointment for Examination Under Anaesthetic for further diagnosis. Widespread pain is worse than ever before. My hips subluxate more regularly than they have done since my early teens, causing instability and pain upon walking. I’ve had a thumb (top joint) subluxation and fracture. My legs have started to go dead every time I climb the stairs; it feels as though all the blood rushes to them, they become extremely heavy and I’m unable to move them (this has happened a number of times throughout my life, but always as an isolated incident, never frequently). My dizzy spells and intermittent falling down continues. I feel extremely exhausted all of the time and I find it very difficult to concentrate and remember things.

About 4 months ago I came across an article on The Mighty Site about Hypermobile type Ehlers-Danlos Syndrome and I remembered what my GP had said about my Hypermobile hips all those years ago.. I had a cartoon lightbulb moment and just thought “Could this be it? Could this be the answer? Does this join all of the undiagnosed dots?” I did some research and asked my doctor about it at my next appointment. We ran through the diagnostic criteria from the Ehlers-Danlos Society website, and sure enough I tick all the boxes. She has since sent two more referrals with symptom updates and relevant family history to rheumatology, and is convinced that we might finally be on the right track to solving my medical mysteries. She thinks that many (if not all) of my symptoms could be related to my hypermobility, and whether that turns out to be hEDS or HSD & additional issues, remains to be seen.

As my symptoms worsen, it’s getting harder and harder to deal on the daily. I’m waking up, going to work, coming home and almost immediately ending up in bed with pain and exhaustion. Sick days from work are becoming far more prevalent and I worry more each day about my deteriorating condition. 

After so many years full of increasing, unexplainable symptoms, the thought that an explanation might be within sight is quite overwhelming. At the same time though, I feel the need to manage and monitor my expectations closely. Knowledge about both hEDS & HSD seems to be scarcely present in Ireland and that fact both saddens and scares me. I might finally be onto something, but there may not be a doctor available to diagnose or treat the condition that’s responsible for my complaints.

Having access to a specialist who is well versed in hypermobility disorders would change the game completely, and definitely give me more hope of attaining an accurate diagnosis and 

treatment/management plan. 

Since publishing this story, Kayleigh has obtained her diagnosis of HSD privately 

-Congratulations Kayleigh!