I knew something wasn’t right when I could see everyone at the beginning of their 20’s living fun, carefree, busy lives, and I was cancelling plans due to exhaustion, losing many friends, and seemingly completely isolating myself. The mountains of doctors I saw always put it down to my history of Post-traumatic Stress Disorder (PTSD) and depression even though I knew I was in a better place and it felt different.
The fatigue was constant, I slept as soon as I would come home from work, I would be exhausted on the weekend, and could never get refreshing sleep. 8 hrs, 5 hrs, 10 hrs, it didn’t change no matter what I did. I started getting symptoms of sleep deprivation even though I was sleeping all the time.
Then about a year ago my fatigue started to become more debilitating, I was barely functioning on the inside. I was working full time and putting my absolute all into it but in doing so I would be bed ridden at the weekends and in the evenings.
Then the pain started. First it was burning pain in my back which progressively got more and more agonising. It got to the point where the pain was present daily and on some days the pain would get so excruciating I would be in tears, doubled up all night trying not to go to the hospital as I knew it would be more waiting and probably a waste of time. After a long battle, I finally got referred to a Rheumatologist. Naively I thought that would be it, I would get a diagnosis for my fatigue and pain, I was so wrong. My fatigue was getting more and more crippling and there were times when I was so weak and dizzy, if I didn’t live with my boyfriend, I think I would have starved. I couldn’t do even the simplest of activities. My burning back pain got worse and felt like the bones in my spine were on fire.
I also started to get a new symptom which was Brain Fog, or as I now understand it to be Fibro Fog. It feels like your brain has been filled with thick acrid smoke. Normal sentences become utter gibberish, recalling information, and trying to relay it to someone became almost impossible. Multi-tasking became so challenging and I found words were just coming out wrong. I would think of the word I was trying to say, and a different word would come out, then I would lose my trail of thought and my mind would just be blank.
My memory was turning to mush and I didn’t know what was wrong. It was embarrassing but most of all it was scary, at 22 I felt like I was losing my mind with no explanation or reason for it.
My appointment with the Rheumatologist came 6 months later, he did the pressure (tender) point test for Fibromyalgia and ruled it out as I didn’t have enough at the time. He sent me for an extensive amount of blood tests, a bone scan, a 24 hr ECG, and a brain MRI. To rule out inflammatory arthritis, MS, a heart related issue, and multiple other illness my symptoms fit. A diagnosis didn’t come from that appointment and I felt like it really was all in my head as he couldn’t (understandably) give me any answers. He said my symptoms had too many possibilities.
I was meant to wait another 6 months for a follow up, but my condition kept getting progressively worse. The burning pain that was previously only ever in my back had spread through to my entire body, it was a gnawing, burning, irritating pain. My legs had started to hurt when I walked, climbing stairs caused excessive pain in the front of my legs and my forearms would burn and ache. I felt like I had been given the Flu x 100 as the aching was relentless, constant, and varied in degree from day to day. The pain was becoming unbearable, I was getting headaches, seeing floaters and things in my vision constantly, feeling weak, shaky, and like my mind had become a blur.
Fast forward to my diagnosis appointment which was brought forward but now on the phone due to the pandemic. We talked through all my new and existing symptoms and he consolidated this, the tests, and diagnosed Fibromyalgia. For a second I felt relief, it wasn’t all in my head, I’m not crazy. Then the sadness set in, my mum has Fibromyalgia, so I was familiar with the condition. I was also aware that it meant chronic pain for the rest of my life, it’s incurable, and although I’m in my early 20’s, my body is like an 80-year old’s.
Being diagnosed with Fibromyalgia is basically being told you are going to be imprisoned for the rest of your life in a dysfunctional body and there isn’t much anyone can do. At 23 living with this debilitating illness has stolen a lot of my life. I am unable to plan ahead or get excited for days out or date nights as the unpredictable nature means you often have to cancel plans because you are physically unable to get out of bed. Let alone shower or do your hair and makeup. You feel apprehensive to do even the smallest of tasks such as the dishes or cleaning for fear you’ll cause a flare up.
The hardest part for me is grieving the person you were before or the person you imagined to be. Not confined to a body constantly in pain and so fatigued, everything is a challenge. To know what energy feels like and not live life feeling like you can barely keep your eyes open. I was and still am a very ambitious person. I put my heart and soul into my work and everything I do. I hate that Fibromyalgia limits that and prevents my growth as a person and potentially even in my career.
I feel trapped and in constant fear of my illness flaring up that I feel I miss out on enjoying life. There are days when you want to get out of bed but physically can’t and that is one of the many reasons why chronic illness plays a detrimental part in the state of your mental health as it chips away at you. Constantly living life with new limitations, living with an often-invisible disability that so many do not understand which comes with its own set of challenges.
However, one thing it does is make you one hell of a fighter and incredibly strong. Those suffering with chronic Illnesses tend to be the most empathetic people you will ever meet because they know true pain, they are living it every single day. You gain a better insight and understanding into the invisible wars so many go through in their bodies and in their minds.
Although Fibromyalgia is not life threatening, it is life altering and contributes to a high number of suicides. So, for anyone reading this, I hope you know you are not alone and so many understand and support you.
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Official Fibromyalgia Blogs