Floored by ME – the condition that defies diagnosis

Sleeping problems, headaches, and constant pain in my body like broken razor blades were being pulled through the inside of my veins,” is how Des Doherty from Woodlawn describes the impact of Mylagic Encephalomyelitis (ME) or Chronic Fatigue Syndrome on his life, when he was diagnosed with the condition in 2006.

He was 50 years old, and had previously been ill with shingles, which left him feeling distinctly unwell.

“I got them in 2004 on my waist and back and was off work for six weeks,” says Des, who worked as a postman in Menlough. Although the shingles lifted, he continued to suffer from flu-like symptoms and had no energy, but didn’t know what the problem was, so he just kept going. Two years later, the shingles returned, this time affecting his face. Again he was off work, but returned after a month. However, he was floored.

“I couldn’t do anything. I went to my doctor and told him I wasn’t feeling good. He diagnosed a virus, related to my immune system.”

The medication Des was prescribed didn’t work, so he was referred to consultant neurologist Dr Michael Hennessy, who admitted him to the Bon Secours hospital in Galway city for tests.

There are no tests to diagnose ME, Des explains, so it’s a question of eliminating everything else. “If nothing is left and you have a certain set of symptoms, ME is diagnosed.”

Des is one of some 12,000 people in Ireland suffering from ME, or Chronic Fatigue Syndrome (CFS). Symptoms include flu-like exhaustion made worse by even minor exertion (physical or mental), muscle and joint pains, sore throats, swollen glands, disturbed sleep, impaired concentration and memory, dizziness and headaches. One feature is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day, or even within a day.

Once he was diagnosed, Des was given medication, but nothing worked. On good days, he barely had energy to get from his bedroom to his sitting room.

“I couldn’t get out of bed, except by holding onto the walls to get to the bathroom or the sitting room.”

Des and his wife Chris have four children – at the time the two youngest, Drew and Orla were in secondary school, Kevin was at home and their daughter Lisa was away.

Chris and the children were brilliant, he says. “I was sensitive to light and sound and the children were so good about that.”

For more, read this week’s Galway City Tribune.