a rheumatic condition characterised by muscular or musculoskeletal pain with stiffness and localised tenderness at specific points on the body.
In 2013 I developed the condition fibromyalgia, which affects the nervous system – causing heightened sensitivity to environmental and biological stressors. It took until 2014 to get a diagnosis, and it was far from easy, and far from painless (excuse the pun).
This series will be in multiple parts, so that content is easily digestible and isn’t information overkill…
- Part I shall outline fibromyalgia and the symptoms, the stigma associted with ‘invisible’ illnesses, and how this affected my diagnosis and care, and the impact it has had on me holistically.
- Part II will contain discussion surrounding the management of the condition and the associated conditions, learning to ignore set backs and celebrate success, and ways which you can support your condition personally, and professionally.
Alas, join me below to read my compassionate blatherings which I hope come across as coherent, sensical, informative, and beneficial; as my brain is on a go slow today. Which speaking of, LET’S TALK ABOUT FIBROMYALGIA!
Fibromyalgia is still greatly misunderstood and highly debated between different professionals – however one thing is generally agreed on between all professions; that fibromyalgia cannot be caused by just one thing, and fibromyalgia needs a holistic self-centred approach.
Think of it as an information overload. A network (your nervous system) can only support so many service users (stressors), thus causing the system to crash when the demand exceeds capacity. Thus causing continual attempts to reboot because there are still many people trying to access the network.
If that metaphor was shit, I apologise. I loved english literature in school so I guess I have to talk philosophically and abstractly make the most from my knowledge(!)
However, that’s how I like to think of my body, because it is fabricated out of genetic material in the form of DNA, which can sometimes be predisposed to a specific conditions, or to partake in lifestyle factors which can activate these predispositions. So even though it’s far more complex than my description, your experiences, environment, lifestyle, and genetic makeup are all related to the exacerbation and onset of fibromyalgia.
The symptoms listed below are in reference to those from the NHS.uk website.
Symptoms can vary in their degree of severity, depending upon conditions such as stress levels, the weather, how physically active you are.
- Hyperalgesia – when you’re extremely sensitive to pain
- Allodynia – when you feel pain from something that shouldn’t be painful at all, such as a very light touch
- Sensitivity to smoke, bright lights, and/or certain foods
Fatigue is more than just tiredness. It’s like lethargy and feeling drained and exhausted, similar to the way you feel when you have the flu.
- Non-restorative sleep – being unable to reach deep sleep, which causes frequent episodes of waking up in the middle of the night, even though you still feel really tired
Cognitive function (‘fibro-fog’)
- Slowed or confused speech
- Difficulty processing information
- Difficulty retaining information
- Troubled concentration and attention
IBS (irritable bowel syndrome)
This is something which I have suffered from, especially since my surgery to remove a perforated appendix, as that left me with a lot of adhesions in my abdominal cavity, but also required my small bowel to be lifted out during the operation.
Oftentimes those with fibromyalgia develop IBS, however because IBS is also linked to anxiety disorders, so it’s definitely worth mentioning when you developed fibromyalgia symptoms, and when you showed signs of anxiety, to your GP, or mental health professional.
- Restless leg syndrome
- Unusually painful menstruation
- Dizziness and clumsiness
- Tingling, numbness, prickling or burning sensations in your hands and feet (pins and needles, also known as paresthesia)
How the Onset of Fibromyalgia Impacted My Life
As mentioned previously, I began to present symptoms in 2013, which meant that at the meer age of 13 I was beginning to develop a chronic widespread pain disorder; alongside schooling. This was very difficult, often meaning that I had to work from the school library, or from home. However, as my condition progressed, and because the school that I attended at the time wasn’t disabled-friendly, I had to receive educational support from a home tuition service. But this meant that I had to drop many subjects and only receive a few hours of schooling per week, due to the lack of teaching provisions for the amount of students(shocker).
During this period of my life, I was desperately trying to go back to school – as this meant I was able to see my friends and maintain good grades; but because I was trying to process such a big lifestyle change and my untreated pain, my parents and I were struggling to receive support from healthcare professionals.
Thankfully I am now in the care of fantastic medical professionals and I am extremely grateful to have their support and input, but it took a while to get to this stage, as many different doctors (GP’s and Rheumtatologists) used to put my symptoms down to growing pains, hormones, or even in one brilliant example…ASKING FOR ATTENTION!
Therefore, I think it’s pretty clear to understand why I was so hesitant to visit doctors when I had only received uninviting responses. So much so that I used to feel violently anxious in the days leading up to my appointments. This was of course, until I felt comfortable in the hands of the medical professionals I am now under the care of. However, this was extremely overwhelming and turbulent for me to go through, especially considering I had to teach myself two subjects and try to keep up with my English and Maths work; nevermind worrying about my future prospects.
Therefore, the psychological stress that I experienced was significant, and definitely affected my pain, and also negatively impacted my mental health conditions – especially anxiety and PTSD.
The Stigma Associated with Invisible Illnesses
So with that being said, the stigma associated with ‘invisible’ illnesses can severely limit an individual’s ability to process the impact it has upon their physical health, and potential mental health problems.
Therefore, if you are suffering from a physical or mental health issue/concern, you are 100% entitled to seek help and let your voice be heard. If professionals have a disrespectful and unapproachable bedside manner, or disregard your perceived symptoms or suffering – make an official complaint. You deserve to be treated with respect, and if a doctor or another health and social care professional is respectful, yet doesn’t necessarily provide an answer that you comprehend or understand, ask questions and seek second opinions. It’s your right to understand your own body and mind, and if you see and feel ailments that others may not, that doesn’t mean you’re unworthy of receiving intervention and support.
As always I want to sign off with love and hugs. I greatly appreciate the support that I receive from readers and close friends and family, so it really is a great motivation for me. Hopefully you will tune in for part two, which shall hopefully be up soon! But I have included an extract from it below.
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“Throughout the struggles, a light can still be found. Throughout the pain, turbulence, and emotional turmoil; the light remains. The light never disappears, but the despair and negative emotions cloud over, making your reality seem dark and unforgiving. But the cloud will part when there’s a breeze. A rainbow will form after the storm. You just have to trust in yourself to keep pursuing your dreams and ambitions despite your physical and mental health problems…by accomodating them. By accepting them, and welcoming them into your life with care and open arms.”