Chronic Fatigue Syndrome Chronic illness Costochondritis Fibromyalgia Invisible Illness Parenting In Pain

Invisible Illness – My Fibromyalgia & Chronic Fatigue Story

For over 4 years I have been living with the confirmed diagnosis of Fibromyalgia, Hyper-mobility Syndrome, and Chronic Fatigue Syndrome. All of which are considered invisible illnesses. Due to the fact the the symptoms are not visible to others. Like many who live with invisible illness it took several years for doctors to listen to and believe me. This is my story.

The Long Road To Diagnosis

My fibromyalgia symptoms first began in 2009. After an emergency trip to the hospital that eventually resulted in an operation on my right eye. I began to experience wide spread pain, tender points all over my body specifically near my elbows and knees. Fatigue that would see my in bed for days. Doctors would tell me that it was my weight or my lifestyle was the reason for the pain and fatigue. I would be sent away with instructions to loose weight and exercise.

Around October of that year, a bad cold and cough led to diagnosis of a chest infection. The pain that I felt during the coughing was scary. There was an ache that I could feel in my breast bone. It was so bad, there was a few times I thought I was having a heart attack. Doctors tested me for asthma, which was eventually ruled out. Physical examines of my sternum where excruciating! I would feel the pain of the examination for days, sometimes crying because of it. Finally after a few months I was diagnosed with Costochondritis and told that it would go away within a few months.

A few months passed, the Costochondritis pain was showing no sign of going away. I began to research the condition and found that it is a symptom of Fibromyalgia. As I read the list of symptoms I found myself saying “yep I’ve got that”. After many more visits to the Doctors explaining to them about my other symptoms I was referred to a rheumatologist. Who told me that I didn’t have Fibromyalgia but I did have Hyper- mobility Syndrome. I left the appointment feeling like the symptoms I was experiencing was all in my head.

That’s Not Right

I couldn’t accept this lack of diagnosis. I knew that there was something wrong and that it wasn’t only in my head. After another few months I demanded another referral to a rheumatologist.

After a long time of waiting I got an appointment through to see someone at a different hospital due to the high waiting list in my district. The appointment was great, I felt like I was being listened to. The rheumatologist carried out a thorough examination and confirmed what I had suspected for so long. I have Fibromyalgia. This was in 2013!

I Might Have An Invisible Illness, But I Am Not Invisible

After the appointment and confirmation I was relieved that I could finally say I have a diagnosis. I thought people will believe me as a doctor has confirmed my illness. How wrong was I? Since my diagnosis I have lost friends, had family members question whether I was really living with a chronic illness.

Source

Over the years the list of symptoms I experience has grown. New symptoms are popping up and my pain is getting more severe. I feel abandoned by my GPs who prescribed me with anti-depressants, anti-inflammatories and co-codamol. Which to be honest does nothing for me. Over time I have spoken to other fibromyalgia sufferers who have been prescribed lots of other medications that I have never been offered. Maybe my own GP simply doesn’t believe in the condition!

Parenting In Pain

Raising a child whist living with invisible illness, is not easy.. The more active our son gets,, the harder it is going to be for me. There are be days where the pain, fatigue and other symptoms will feel unbearable. But with an incredible support group consisting of dotting grandparents and an amazing husband, we will manage to raise our son to be happy and loved.

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2 Comments

  1. Big hugs Nic. I’m sorry the doctors are useless. It took them 4 years to diagnose me and it was no fun at all. xx

    1. Thanks hon. It’s shocking how slow they are at diagnosing a lot of things not just fibromyalgia!
      I’m hoping if I keep pestering them they might give me more help. All I get now is antidepressants and some pain relief which doesn’t even touch the sides lol xx

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