Fibromyalgia- the invisible illness I also struggle with
I’ve only ever spoken about my Fibromyalgia a few times on Instagram with other people, but I haven’t really gotten into it here. Fibromyalgia hasn’t caused me to be bed ridden like some other people, but it has caused a great deal of discomfort and inconvenience in my life.
Almost everyone I know who has Fibromyalgia experiences it differently. Even with similar symptoms, we all feel somewhat different than the next person. Some can function daily and grin through the pain, whilst others are in such horrible deep pain that they are basically man down. Whenever I tell people I have fibromyalgia, I always have to explain, with either a small percentage of my audience either having heard of it or knowing someone with it. After reading and posting Elizabeth’s #iamasurvivor story about Fibromyalgia, it just made sense to talk a little about it. I am also still getting my education on it, because I have heard of so many different cases.
According to Mayo Clinic: Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.
So then, what about the symptoms? On Mayo Clinic, these are the general listed symptoms:
· Widespread pain. The pain associated with fibromyalgia often is described as a constant dull ache that has lasted for at least three months. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
· Fatigue. People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is often disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea.
· Cognitive difficulties. A symptom commonly referred to as "fibro fog" impairs the ability to focus, pay attention and concentrate on mental tasks.
Fibromyalgia often co-exists with other painful conditions, such as:
· Irritable bowel syndrome
· Migraine and other types of headaches
· Interstitial cystitis or painful bladder syndrome
· Temporomandibular joint disorders
So now that you know that, you should know that many people’s pain is triggered in different ways. Some people find the same medication helps, while others don’t.
I first started noticing this odd muscular pain when I was 12 or 13 years old. It started in my lower back or upper back. It was a dull pain, and even though I could carry on with whatever I needed to, this pain was a constant and irritating reminder. I blew it off for years and found that in my happiest moments, I didn’t feel it.
Then came university. That is when the pain became a little worse. I hated what I was doing in university, was told I have anxiety and depression and in general was a miserable mess. When I described my pain to the doctor, she told me “Awande, you have Fibromyalgia”. I didn’t even know what that meant, let alone heard of the name. I went searching and felt concerned that I would never get rid of this pain, but could only manage it.
I was prescribed muscled relaxants. What a joke. They helped with my extreme period pain, but they didn’t make a dent in the pain I felt almost daily. Then one day, a friend playfully slapped me on the back. I thought nothing of it till I felt the tingle of Fibromyalgia creeping in exactly where she slapped me. The pain spread (as the Fibromyalgia pain normally would). The pain I experience usually starts in my back or chest and spreads at an equal rate going up and down my body. It’s a cruel joke whenever I try to sit down.
That’s the moment that I realised I am not just triggered (or have a flare up) by my anxiety and depression, but by forceful, physical touch. Others have been triggered by extreme temperatures, the wrong fabrics, lack of sleep or too much sleep, diet and treatment.
I know I have had cognitive issues, feeling fatigue during the day- so much so I actually start falling asleep. I can’t change into my pyjamas and by the time I have, I start crying because I now have to try get in the bed with the weight of the blankets and my muscles get sore trying to find the right position to sleep in.
I am still figuring out what makes it better, from Ibuprofen tablets, hot baths, relaxation and mindfulness exercises, to trying to reduce stress (this one is funny because I currently work as a chef and lecturer so there is not time to feel less stressed).
But this post is an insight for those who don’t understand this invisible illness and often think its all in someone’s head. In the beginning, I was told to just “walk it off”, “get over it” and to “stop being a baby”. People dismiss what they don’t understand. Read that again!
For those of you who are going through this- you are not alone. There are networks with people who can offer support and also, if your doctor doesn’t believe you, find a new one! I can’t tell you how difficult it is trying to get help only to be told that you are just dreaming it up.
Let me know if you want me to look into the different treatments and ways to combat Fibromyalgia. We can learn together.