ME Awareness: Failure to accurately diagnose can lead to lifetime of misery and suffering by Debbie Mckno | 17 May 2020

May 17, 2020

The Lost Years by Debbie Mckno.

My name is Debbie. Here is the story of my long, exhausting, and difficult battle to get diagnosed with Fibromyalgia and Myalgic Encephalomyelitis.

From 17 years old, I was told by doctors, “You are just run down.” I had constant infections, viruses, and chronic tonsillitis.

Debbie Mckno.

Feeling as though I always had the flu, I'd visit the GP, who prescribed more antibiotics, stating that I needed to be on them permanently for recurrent infections.

Eventually, I had my tonsils removed, and the sore throats did stop. At the time, I was hoping I would be on my way to recovery. I was twenty-one.

However, the fatigue and multiple vague symptoms remained along with the flu-like feeling and constant muscle aches.

I would be in bed for a few days, feeling very ill, then recover, only for the symptoms to flare again a couple of weeks later.

Desperate times

Despite being a young mum, continuously run down and having severe tummy issues, I went to the gym, cycled, and walked each day. I never sat still. I was always on the go, but deep down, I knew something was wrong.

I was in pain and felt weak. I had a raft of symptoms but didn't understand them. I lived a healthy lifestyle, but my body was failing me. I was young and should have been healthy, but I was exhausted.

I carried on, paying for private doctors when I could. I had food intolerance tests, did rotation and candida diets. I visited herbalists and tried kinesiology, Reiki, Spiritual Healing and more.

I tried most holistic therapies and had my mercury fillings removed and did Chelation. But still, my symptoms continued.

“It's just depression,” my GP told me at the time. “You think you are in pain, but you're not. You're just tired and run down.”

Debbie in the 90's when her symptoms first began.

In 1995 I was diagnosed with irritable bowel syndrome (IBS), which confirmed that in my GPs eyes, my symptoms were indeed psychological!

I was refused life insurance at twenty-three, as the GP told the insurers I was heading for a nervous breakdown.

Back then, I thought my GP was helpful. I was young and naive. He was almost retired and had no time for a ‘neurotic’ young mother.

I had had my second child, and I struggled through each day utterly exhausted. I remember standing at the kitchen sink and falling asleep while washing the dishes.

In the schoolyard, I was too tired to speak to other mums. I was socially isolated, and my partner, who was a farmer, worked seven days a week.

Doing the best I could

Dr Shepherd explains the importance of an early and accurate diagnosis. It's one to share with your GP if you suspect M.E.

I lived in a village and didn't drive. I managed to keep the kids fed and clothed and the house as clean as I could.

I never told anyone about my symptoms as I couldn't explain them. Close friends and my partner knew, but for the most part, people just thought I chose not to work.

I would take part-time jobs, I even started my own cleaning business, but was forced to give it up, as I repeatedly got shingles and would burn out time and time again.

I used multivitamin therapy and again was being prescribed antibiotics. I was reluctant to take them, but my doctors still stated I needed to be on them permanently. 

So instead of talking to people about how I was really feeling, I suffered in silence for many years, too ashamed to speak out and crying behind closed doors. How could I explain what was wrong with me when doctors could not? 

In 1994 my doctors wrote that I was TATT (tired all the time) on my medical records. So that was it! I was ‘Tired’.

I was also diagnosed with other conditions over the years, including an underactive thyroid, which served to further exacerbate the fatigue.

By 2011, my mobility had deteriorated. I couldn't rise from a chair, and walking became painful.

Accurate diagnoses

I took an exhaustive list of symptoms to a GP who referred me to a Rheumatologist.  He diagnosed me with Fibromyalgia. I will always remember the date – January 5th, 2012.

Yes, my symptoms were real! The pain was real, from the flashes of burning and the electric shocks that jolted through my body – losing my balance, severe nausea, muscle spasms, bladder problems and not being able to string a sentence together.

It wasn't just in my head. I wasn't mad. It was real. At last, someone believed me!

It had been an Eighteen-year-long battle for a diagnosis of Fibromyalgia. The GP even apologised to me on behalf of the NHS.

In this free download, we explain the key symptoms and highlight the facts about M.E. that people need to know.

In 2018, I was referred to an Endocrinologist who specialised in myalgic encephalomyelitis (M.E.) by a sympathetic and understanding consultant. This marked another turning point.

I only saw her once, but she made recommendations to my GP and really tried to help me. After reading my file she was shocked, stating that she would have diagnosed me with M.E. within three to six months.

I cried. It had taken twenty-four years to see her. It was 1994 when I first went to the doctors, exhausted and tired. I knew that I was not just tired. I knew I did not just have fatigue.

Those Lost Years

M.E. is a debilitating neurological condition with an exhaustive list of symptoms. Finally, the Jigsaw was complete.

  • All those years, in fact, all my adult life, spent thinking I must be a hypochondriac or lazy or just depressed, or simply just tired and run down.
  • All those years of doubting myself, sinking further into depression, thinking it was all in my head. Finally, I felt recognised, although the trauma of living with no diagnosis has taken a toll on my mental health, my finances and my family.
  • All those years, I kept things hidden and was afraid of ridicule. I was ashamed. I felt that everyone had doubted me over the years. 

The battle is not over, as many people do not understand how these conditions affect me. Not being diagnosed for so long has had a significant impact on my life.

I'm still struggling to come to terms with the fact I was not diagnosed and am angry that I suffered needlessly for nearly twenty years.

Even now, I still ‘look well’ as my illnesses are invisible, but the symptoms are not. Living every day with chronic pain and fatigue is not easy.

  • How can I explain that brushing my teeth or having a shower hurts and totally exhausts me and that sometimes my whole body feels like its vibrating?
  • That sometimes it's too painful to swallow as my muscles are too weak and in spasm?
  • That a gentle tap is painful and that opening a can is sometimes impossible?
  • That at times, I stand in my kitchen crying because lifting the kettle is impossible? 

Worst symptoms

This free factsheet summarises the known pathology of M.E. It's helpful when trying to inform others about research findings.

The most worrying things though are the brain symptoms. I forget to turn things off. Sometimes I can't remember how to spell. I get mixed up and am often confused.

I say the wrong words. I get appointments mixed up, and I sometimes can't even remember how to operate or programme my washing machine.

These symptoms are invisible. Which is what I feel I am when I'm too exhausted to participate in life, stuck inside my house, as I'm too weak to do even the simplest tasks or go out. 

At times I'm too exhausted to drive, or I'm too dizzy or don't even have the energy to turn my steering wheel.

There is no cure for Fibromyalgia or M.E. We Warriors must pace ourselves and fight our symptoms every single day.

We may look Okay. But sometimes we are not. There are days when I feel so sad that I lost almost twenty years of my life, not knowing what was wrong with me.

Where I am now

I'm still struggling with my symptoms, but at least now I can make sense of everything. And I know I am not ‘just tired’. I still battle with medical professionals who even now, do not seem to understand M.E.

Despite the Endocrinologist who specialised in M.E. writing to my GP, they always make me feel like I am lazy.

Just last week, my GP told me, “People with your condition need more exercise,” and that I should try not to think of it as a chore! 

I explained that I do try, but it's not always possible. Has he even read the letter from the Endocrinologist?

I've had access to my medical records and was upset by what many GPs have written, even now I feel the GPs are still doubtful, and many still do not believe in M.E., and yes, I still get upset and cry and shut myself off from people.

I always find it hard to ask for and accept help. I’m not just tired. I’m a Chronic Illness Warrior.

ME Awareness Week Monday 11th – Sunday 17th May 2020

The Lost Years

Check out the MEA Media Toolkit for video, free factsheets, posters and graphics.

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