In August 2018 after 5 years of asking doctors “What is wrong with me?” I was diagnosed with an incurable illness, one that I had never heard of and knew nothing about. It’s called Fibromyalgia.
Fibromyalgia is a combination of symptoms that cause widespread pain and chronic fatigue. It is not yet known what causes the illness and sadly there is currently no cure.
Having so many symptoms makes it difficult to detect this illness and on countless visits to A&E and Doctors with sickening pain I was often told. “You have an injury”, “There is nothing wrong”, “You are stressed”, “You need physio”.
Before I was diagnosed my symptom was just one thing to begin with, a pain in my left shoulder that was so bad I used to throw up. My first episode was whilst on holiday in Majorca in 2012. My husband went to take our daughter who was a baby for a walk in her pram and when he came back I couldn’t get off the lounger. The pain was so intense. Being the sun worshipper I am even he thought I was being ridiculous. Every time I went to sit forward the pain crippled me. I lived with the pain for the remaining 3 days of the holiday which made me utterly miserable and when we landed I went straight to A&E.
Each flare up, I would need strong painkillers and anti inflammatory medicine which were sometimes given by injection plus physio sessions (6 weeks worth).
As the years crept on I developed many other symptoms which included:-
Muscle spasms, pains in my hands (I later had carpel tunnel surgery in my left wrist which didn’t help at all), loss of grip, Irritable bowel syndrome, nerve pain, muscle stiffness, chronic fatigue, restless nights sleep every night, pins and needles in my limbs, numbness in my legs, feeling of cold water dripping on my skin, joint pain in my whole body bought on by cold or damp weather, tension headaches, foggy head, excessive sweating and stiffness.
Despite all of this nothing was picked up even after being sent for carpal tunnel surgery which I was later told was unnecessary.
During Christmas 2017 on boxing day whilst cooking for 11 people I put on a brave face as I always do, after I had laid the table I broke down in pain, my body was not able to keep going the way I force it to, my mum took me to A&E and was given another load of strong medication and referred to my GP who as always referred me for yet another round of physio. I was so cross but I knew if I didn’t go, they would stop my treatment. So reluctantly I went. I turned up to physio and was surprised to see my neighbour as my therapist. I told him everything that had been going on and how physio made everything worse, this would sound unusual but exercise is a trigger for a Fibromyalgia sufferer. He sent me for some tests including the MRI I had been begging for, over years and I was referred to a consultant.
I had to continue with the physio in the meantime and August 2018 was the final consultant appointment. I had geared myself up to be told once again there was nothing wrong with me so I wasn’t prepared, I hadn’t even self-diagnosed I just knew that every day was painful and this couldn’t be “normal”. I went to my appointment on my own and I took my daughter. I remember sitting in the chair and the consultant who was to give the verdict being smiley and confident I was going to lave with no results. An old gentleman who I immediately felt at ease with was my examiner. He looked over all my notes and test results and stood me on my feet. He needed to run some more tests of his own, so he checked my reflexes, mobility, etc. The last thing he did was dig his thumb into a point at my neck and shoulder which caused me so much pain I dropped to my knees. “Ah” he said and sat down. I wanted to thump him, that bloody hurt! Later I learnt Fibromyalgia sufferers have tender points in certain areas of their body (called fibro points) and if you push on them, they feel like bad bruises. He was checking mine.
He blurted it out “Nicola dear” he said. “You have Fibromyalgia”. The room span and I laughed. I laughed because I was nervous.
“What is Fibromyalgia and what does this mean?”, “Do I need medication?”, “Will I get better?”. I had so many questions and we were running out of time.
He replied briefly to me “You won’t get better, You might even get worse. You will need medication for the rest of your life, you can no longer exercise only gentle walking, swimming or Pilates. Nicola I am so sorry, you are so young”. Apparently most diagnoses are for those 60+ I was 30!!! He gave me a leaflet and told me to contact my GP.
I walked out of there giddy and drove home. I still didn’t understand fully. I was happy to have a diagnosis finally, I was so relieved but also deeply sad this is with me forever. It felt like a death sentence. Knowing I will be in pain still for the rest of my life was not a positive outcome!
I saw my GP who gave me the medication I need to keep me as comfortable as possible. The pain is never gone and I still never sleep properly (even with sedatives). My GP also cleared somethings up on how I can keep things more comfortable for myself.
• Lose weight (takes the pressure off my joints and organs something 2 years on I have not accomplished because one of my medications have the side affect of “never feeling full”).
• Take gentle exercise.
• Keep your life a stress free as possible (stress is a trigger). Not just for my Fibromyalgia but also my hypertensive blood pressure.
• Self-care. Do as many things that bring you joy each day as you can. This will keep my mind healthy. Unfortunately, Depression and Anxiety can be symptoms. Ones I do not yet have and ones I really do not want. I do get down though it’s not nice waking up tired and in pain every single day and having to put a brave face on while I work and be a mother.
• Listen to your body. If you need to rest then rest! I don’t get tired like others I get exhausted and they are completely different.
I was also warned that I should remain positive and not give up, this should help prevent the more severe symptoms from surfacing that can be more debilitating. Some Fibromyalgia suffers suffer with ME and also loose the strength to walk needing wheelchairs.
Along with Fibromyalgia I was also diagnosed with Hypertensive blood pressure, Ehrlers Danlos Syndrome, Hypermobility, Scoliosis and a trapped nerve in my neck. So, despite my smile you all often see there is a lot going on behind that. Just like Mental Illness you can’t always see chronic illness either.
So lastly, I just want to tell you all how beauty has helped me escape my illness. Beauty products and my love for them made me start sharing on The Gram, something my friends and family saw I enjoyed and had a passion for. Playing with products and sharing them was the hobby I never knew I needed. As I became more involved, I launched my blog something my husband encouraged me to do. This gave me an outlet of something else I could focus on, away from my illness and personal life. My own beauty bubble where I could forget about the pain or how tired I feel, even if only temporary. Writing about beauty and playing with products became my self-care. I know social media can be seen as unhealthy to some but without my beauty squares in my life I would be lost!
My life right now is comfortable, I suffer pain and fatigue every single day but I manage it. I have flare ups bought on by my triggers which makes things more debilitating, these usually last 2/3 days. I am though for now grateful that I have some control and despite feeling uncomfortable most days and things that I used to enjoy I can no longer do, I am able to still live a fairly normal life. For how long no one knows!
Thank you so much for reading. If you yourself are waiting diagnosis don’t give up, or if you too are a chronic illness warrior know that there are others in the world that know how you feel, even this crazy Londors over here.
My DMs are always open if you need someone to speak to who understands.
June 14, 2020