Five years might not be seen as too long, however, constant pain, sleep difficulties, migraines and headaches, as well as problems with mental processes can make those 5 years feel like a never-ending hell. I am a 19 year old young woman, and finally, after 5 years begging various doctors to answer questions regarding all issues with my body, I was able to rule out other possible conditions and come to the conclusion that what I most likely have is Fibromyalgia.
It all started 7 years ago, when I was admitted to Mater Dei Hospital with Tachycardia: my heart was beating at an average rate of 160 beats per minute. This happened unexpectedly. I was not experiencing stress, but from a week before I had been complaining about joint pains and had also developed a generalised macular rash. At admission I also had a sore throat and a cough. Upon undergoing an echo, the cardiologist found a small pericardial effusion, which is basically a small increase of fluid in the pericardial cavity.
I was kept there for a week under observation, and diagnosed with Myocarditis at the time, which is basically an inflammation of the heart muscle which as a result can cause arrhythmia (abnormal heartbeat rhythms). There was no evident cause, and we were actually told by the cardiologist, that I was only the second case he had encountered so far with this condition. I was only given Propanolol tablets to lower down my heartbeat rate and Nurofen.
Ironically I got my very first period exactly 14 days after I was admitted to hospital with Tachycardia…
I got discharged and I went back to school, hopeful that all was going to go back to normal, but I started experiencing pain in different joints throughout my body as well as headaches.
At first, my family and I thought that the joint pain was related to growing-up pains, which I used to experience quite frequently. These pains however only got worse, and the only two ways that I found effective to ease the pain were taking paracetamol in case of a headache or migraine or putting direct pressure on the affected joints. I also started having difficulty sleeping.
My mum started searching for possible answers on the internet, to see what the pains could be related to, and she stumbled upon Fibromyalgia, also known as Fibromyalgia Syndrome (FMS). Together we started comparing my symptoms with the ones listed on various articles on Google. We then decided to book an appointment with a local physician who specialises in Family Medicine, hoping that he would give us some answers.
Our long awaited visit at the physician came, yet we were surprised when he told us that I was “probably” too young to develop Fibromyalgia and the only way that we could get answers was if we did blood tests to rule out other possibilities.
I underwent blood testing, but when we went back for the blood test results, he told us that the only ‘abnormality’ he could see was the amount of White Blood Cells, which was slightly higher than it should be. He explained that this could be a result of a mild infection I could have had and that there was nothing to worry about.
I remember thinking ‘But why do I have these pains? Does this mean they’re normal? Does everyone experience them?’ I think both me and my mum were confused as she kept pushing for answers whilst reminding him of the similarities between the symptoms of Fibromyalgia and my unexplained pains. Once again, he informed us that I was “probably” too young, and that there was no way of developing it at that age. ‘Was it maybe because I am growing up?’ I thought, yet I knew that this was not the end of it. I left the clinic confused and angry as I had been expecting to get my long-awaited answers by that day.
Yet, mum was the most affected by this, as somehow she felt deep down that FMS was the reason I was experiencing those unexplained pains. She felt that if the doctor had looked more into my symptoms, he would have given me something stronger to ease the pain. She felt like my pain was not being taken seriously. Then again, what could we do? We had to rely on those who studied medicine.
I started taking Vitamin D and Magnesium supplements, as tests taken further on by other doctors we visited resulted in a deficiency. I hoped that the pains would somehow stop through taking those vitamins, yet they only got worse.
When I started attending post-secondary, migraines started becoming more frequent and I also started to notice that I was having a harder time to focus and to remember things. For migraines, I started taking Parcoten since Paracetamol was no longer effective in lessening my pains, and I also started taking them with me to school, occasionally needing them during classes, but for the mental fog I was experiencing, there was nothing I could take unfortunately. I thought that maybe it was because I was putting too much pressure on myself to pass my exams to get enough points to get into University.
Life got harder in my second year post secondary, and I also started battling anxiety, depression and a low self-esteem. In addition, the pain in my joints and frequency of migraines started increasing.
At another clinic I was also introduced to CBD (Cannabidiol) oil that contained no THC (tetrahydrocannabinol). Mum also introduced Lavender oil to help with anxiety and insomnia. Looking back, these were the only things that helped me control my anxiety and remain calm during my A’level period considering the drastically increasing pain I was experiencing.
Summer that year was quite refreshing, as I was teaching a lovely class of 11 year olds at SkolaSajf. I hung out with friends and tried to enjoy myself before attending University. Throughout the summer I did experience some migraines and pains, yet they were not as frequent and so I thought that they could have been triggered by normal tiredness caused by the long hours I was working at the time.
Nevertheless, after talking to a friend, I started thinking that all the pain could be the result of an undiagnosed intolerance to lactose. So I did a lactose intolerance blood test, which resulted positive. This led me to start following a lactose free diet from then on.
Once I started University, everything turned upside down again. Migraines started becoming more and more frequent. In fact, one lecturer in particular noticed my lack of energy during a lecture due to the migraine and even encouraged me to go home and rest.
The pain in my body only got worse. There were times where after a whole day at Uni, I would come home, cry, as the pain would not have gone away with Parcoten, and then go straight to bed.
At this point, mum asked for help on the Facebook group Women for Women (Malta) as she was getting desperate. An amazing woman who happened to also have Fibromyalgia reached out to us and told us to first rule out a possible intolerance to gluten. I decided to test a gluten free diet to see if my pain would subside. At first it seemed to be helping but then, I started experiencing extreme fatigue, and the frequency and intensity of the pain increased again. I thought of taking a break from University as I believed that all of this was a result of the long hours and stress I was experiencing throughout the course. However, Covid-19 hit us right at that time and with it came quarantine.
Covid-19 actually stopped me from quitting the course, but at the same time my self-esteem started decreasing more, depression got worse, and so did the migraines and pains. Each and every day of the week I had to take painkillers and also rub cream on the affected areas as sometimes the pain was unbearable. Some nights I would not sleep more than 3 hours, tossing and turning, either because my mind was not allowing me to rest, or because the pain was unbearable.
I felt sure that this was not an intolerance to gluten, but something else. Fortunately, mum booked an appointment for me with an orthopaedic surgeon this time, as we needed answers. She was still convinced that I was dealing with Fibromyalgia.
During my appointment, this surgeon started asking me to bend my arms and pressed on various bones on my body, and we came to the conclusion that what I could have was Juvenile Arthritis (JA). To our surprise, he told us that I was also double jointed, and that the pains could be coming from this. Mum mentioned Fibromyalgia to him, but like the other doctor he too said that he had to first rule out all possibilities before coming to that conclusion since there are no blood tests to test for Fibromyalgia. He booked many blood tests to check for a variety of things including hormones, vitamins and rheumatoid factor amongst others. I was also given a daily 5 mg dose of the steroid Prednisolone to test whether it would make a difference.
I remember feeling angry, as not only was I left with unanswered questions, I now had even more questions than before. ‘Will I have to take steroids all my life? Will I have to live with the pain forever? If the results are good, what will that mean?’ Part of me wanted the steroids to work, which would mean I had Juvenile Arthritis.
I was so tired of all the pain, I wanted answers and I wanted them now.
Unfortunately, the steroids did not help me. I was still in pain, tired and depressed. We waited for the next appointment with the orthopaedic surgeon was to look at the blood test results and come to a conclusion. My Vitamin D was found still borderline even though I had been taking supplements for 5 years, and the rheumatoid factor was slightly elevated, but according to him, the result didn’t show Juvenile Arthritis, and everything else seemed fine. He then asked me to lie down and started pressing on my bones and joints, asking me where they hurt just like he did during our first meeting. I answered his questions, and also told him that sometimes I would also experience sharp pains in the bones themselves; like someone stabbing me with a hammer. He looked confused as somehow I felt more pain throughout my body than on our first consultation when he was pressing on them. He then turned around and told us that this might actually be Fibromyalgia, indeed!
He started asking me whether I was a social person, and at that moment, that happy mask I had been wearing for years suddenly came off and he could see what I was also experiencing mentally.
With the help of my mum, I talked about how I’ve been sad, lacking motivation, crying all the time and had started almost ignoring my friend’s texts. He and mum agreed that these were actually depression symptoms and told me that Fibromyalgia worsens if someone is not feeling mentally stable. ‘My daughter is on the way to self-destruction’ said mum. He agreed and I believed her. He felt even more confident about Fibro being the cause of it all after we started sharing more information about my difficulty in sleep, migraines, brain fog, etc.
He helped us understand that this condition is not tested for and cannot be diagnosed through tests, but only other possibilities had been ruled out. In addition, he said that there is no actual medication for the condition itself, yet lifestyle changes such as exercise programmes, relaxation techniques, antidepressants and painkillers, as well as talking therapies would help ease the pain. He prescribed anti-depressants, which according to him would not only help me with reducing the pain, but also with my insomnia, depression and migraines.
Coming out of the clinic, I took a look at mum and at that moment I knew that if the first physician we had gone to five years before was in front of her, she would have started shooting lasers from her eyes, as he would have saved me years of suffering if only he had opened his eyes a little bit more and considered Fibromyalgia as an option no matter my age at the time.
Meanwhile, I was personally torn between feeling happy for finally getting an answer by being prescribed something which would help with my overall wellbeing, and being scared that I would have to live with this all my life.
Presently, I am still awaiting the time to take a second set of blood tests to be reassessed, and I have been taking the prescribed anti-depressants for around four weeks. I do believe that there has been a slight improvement in relation to pain, migraines and sleep, however, I know that these things take time.
With that being said, a fear inside me keeps growing on what would happen if later on in life I get pregnant. Will I need to stop the anti-depressants in order to have a successful pregnancy? Will the pain of Fibromyalgia be unbearable combined with pregnancy symptoms if I do stop taking anti-depressants or being prescribed different and pregnancy-safe ones? And finally, will the reduced pain that I’m currently experiencing eventually end? Or is there a possibility that it will increase again?
I guess I have to wait and see…Only time can tell!
Fibromyalgia Facts
Fibromyalgia symptoms include:
- Increased sensitivity to pain
- Extreme tiredness and fatigue
- Muscle stiffness
- Insomnia / sleep difficulty
- Irritable bowel syndrome (IBS)
- Brain fog (a.k.a. fibro-fog) which includes lack of concentration and memory issues
- Headaches
Treatment to relieve the pain:
- Lifestyle changes which include exercise and relaxation techniques
- Therapy such as counselling and cognitive behavioural therapy (CBT)
- Antidepressants and pain killers
Causes:
The actual origin of the cause is unknown, however it is considered to be related to untypical levels of specific chemicals in the brain and changes in the way the brain, spinal cord and nerves (the central nervous system) process pain messages which are carried around the body.
It could also be the cause of inherited genes from the parents.
FMS also appears to be triggered by emotional and physical stressful events, such as:
- Giving birth
- An infection or injury
- Undergoing an operation
- Relationship breakup
- The loss of a loved one
In my own experience I can easily note that Fibromyalgia related pains are worsened when there is an increase in my stress level. It almost feels like a vicious cycle: the pain triggers stress and the stress increases the intensity and frequency of the pain.
Who’s affected?
Even though it’s a condition that can affect both men and women, it affects seven times as many women as men.
Although the condition may develop in individuals at any age, it typically occurs between the ages of 30 and 50.
Research does suggest that it could be a relatively common condition. In fact, estimates propose nearly 1 in 20 people could be affected in a way.
Due to the fact that there is no test for the condition, and symptoms may be similar to those of other conditions, the diagnoses is quite difficult, and it is not clear how many people are affected.
If you think you might suffer from Fibromyalgia, it is better to contact your GP or an Orthopaedic Surgeon. Do mention every single thing you are experiencing, whether it has to do with your physical, emotional and mental wellbeing, as it could help you get your answers quicker. Based on my own experience, I highly suggest that if you are not satisfied with the answers you are given, keep persisting and pressing for answers. You are indeed worthy and you deserve the answers you may be seeking <3
Reference:
NHS. (2019, February). Fibromyalgia. Retrieved September 12, 2020, from https://www.nhs.uk/conditions/Fibromyalgia/
Do you suffer from Fibromyalgia too? We’d love to hear about your experience. Contact us or email us at [email protected]
Christianne Marie Galea is currently reading for a B.A (Hons) in Early Childhood Education and Care at the Faculty of Education, University of Malta, which will lead her to become an early childhood educator. Her wish is to create an environment in which her class children will feel comfortable sharing their thoughts and emotions while expressing themselves freely.
In her free time Christianne loves creating art through mixed mediums such as water colours, acrylic, pencil colours and aquarelles. She also loves listening to music, acting and spending time with her sisters.
Click here to check out Christianne’s full bio as well as a list of all her Wham published articles
