As part of Her Campus Exeter’s Mental & Physical Health Awareness Campaign we will be exploring the what it is like to live with Fibromyalgia. This campaign hopes to raise awareness of mental & physical illnesses within the student population and break the misconception that if you can’t see it then it’s not there.
I have been meaning to write this article for weeks. Ironically, I have been in too much pain to even look at my laptop screen. I couldn’t bend my arms to type and sitting up for any period of time made me physically sick with muscle pain and stiffness. Then, when I felt physically well enough to write, I found I couldn’t string together words to make a proper sentence. My memory went blank and I couldn’t put my thoughts onto the page. I felt exhausted and faint from the mental exertion and I would end up just staring at my title. Welcome to the world of severe fibromyalgia!
What is Fibromyalgia?
Fibromyalgia Syndrome (FMS) is characterized by chronic widespread muscular-skeletal pain. It is a disorder of the nervous system where the body has a heightened and painful response to pressure and exertion. An imbalance of chemicals in the brain has been suggested as a cause, as have autoimmune factors due to the widespread nature of symptoms. Most people develop FMS after a physically or emotionally traumatic event.
Typical Symptoms:
If I wrote down all the symptoms fibromyalgia suffers have, it would be a very long list! Before I had this illness, despite experiencing the pain of many operations, I couldn’t even imagine this level of pain. I can’t even begin to describe it to you. So, instead, I have listed some of the symptoms I face on a day-to-day basis:
· Allodynia: tremendous pain sensitivity to things that most people wouldn’t find painful
· Fatigue: extreme exhaustion upon any kind of exertion that is not relieved by sleep
· Hypoxia: Deprivation of oxygen in the body and in particular the brain, leading to slowed responses and what is commonly called the ‘fibro fog’: a lack of concentration and memory.
· Paraesthesia: tingling and numbness throughout the body
· Chronic migraines
· Light and sound sensitivity
· Heart palpitations and fainting
My Story:
I have suffered from numerous debilitating chronic illnesses since the age of 11. I have been in and out of hospital, seen countless health professionals and spent a significant time away from school. However, the most debilitating of all these illnesses has to be fibromyalgia.
In upper sixth I had a nasty bout of glandular fever. Unfortunately, I never fully recovered and was later diagnosed with Chronic Fatigue Syndrome (CFS): a condition similar to FMS. Despite being easily exhausted and suffering rheumatic pain, I lived a fairly normal life.
I loved getting involved in everything at uni; from marathon training to organizing fundraising events, going to socials to volunteering. However, at the end of first year, I developed another illness that led to an operation at the beginning of second year.
Again my body couldn’t recover from the physical trauma of an operation. Within the space of two weeks, I went from running daily and regularly swimming to struggling to get up the stairs and look after myself. I started sleeping up to 18 hours a day, fainting weekly, missed all my lectures and was unable to go out of the house except for appointments. I couldn’t walk more than 50 meters at a time and I struggled to even speak. Most of all, I was in so much pain that I was scared to move at all.
Diagnosis and treatment:
I quickly saw a consultant and was diagnosed with severe Fibromyalgia, along with severe CFS. It was such a relief to finally know I wasn’t going crazy and actually had a real illness, but it was devastating to know there is no cure and most people never get any better. I moved back home and finished second year there. I quickly began seeing a string of health professionals, desperate to get any relief from my symptoms.
That was a year ago and I am still suffering to the extent that I have taken a break from university. I have experienced daily pain, been on up to 30 tablets a day, was bedbound and then housebound for months and even ended up in a wheelchair.
I found that traditional professionals such as rheumatologists, neurologists, occupational therapists and physiotherapists could only do so much to help me. So, I turned to holistic therapies such as acupuncture, chiropractic care, nutritionists, hypnotherapy and kinesiology for a more general approach to my wellbeing.
What has helped me?
I am a keen believer in the link between mind and body. I have found that having good mental health has made my symptoms more controllable and my outlook more positive, even if I am still in pain. Meditation has played a big part in this journey, as have practicing yoga and mindfulness daily.
Nutrition is something I am passionate about and I love knowing I am eating well. I avoid gluten, dairy and sugar (at least most of the time!)
Hypnotherapy in particular is something I have found useful as it focuses on the good, rather than analyzing the bad. I’m still investigating other treatments and I do believe I can find something that works for me.
Prognosis:
Despite not being a degenerative condition, FMS is persistent and long lasting. Exact figures are unknown, but most people with FMS report that their symptoms do not ever improve and they have it for life.
Being a student, this makes it a particularly hard fact to face. My friends are all planning their futures and have the world as their oyster (slightly cheesy I know!), whilst at the age of 21, mine has already been significantly restricted.
Despite all this bad news, there are some positives to life with a disabling chronic illness. Living with my body in this condition forces me to reevaluate what is important to me. I have had to learn to have a lot of patience with myself, to be forgiving and to prioritize my health over everything. I spend my energy on the things I really want to do, and the people I really want to see, rather than wasting it on more toxic activities. Pain medication allows me to still go outside and do fun things, as well as planning a future around FMS.
I have made some fabulous friends online who also suffer from chronic illness, have learnt whom my true old friends are, how supportive my wonderful family are and have taken up new hobbies. Perhaps most importantly, I have realized how resilient I am and living with a chronic illness makes normal everyday struggles seem easy to deal with in comparison! Even though FMS is for life, I have learnt that FMS is just one part of me and I am able to live a happy and fulfilling life, even if this means a different one to what I had previously expected.
If you suffer from a chronic or invisible illness, my advice to you is to find a way to be positive and find happiness daily. Our minds are so powerful that by changing our thinking, we can do amazing things for our health!
For all sufferers of chronic illnesses, I suggest taking a look at these links: