So what is Fibromyalgia? and Who are Spoonies? I hear you ask. When Fibromyalgia (or Fibro, as people with the condition often shorten it to) first entered my life, I had only ever heard of one case of it, a friend’s father. Since I began living with and learning about the condition I have heard the word mention much more often. However, maybe I am just aware of it and actively looking for it, like when you get a new car and suddenly see that model everywhere. Fibro is a chronic health condition and unfortunately because the medical profession does not fully understand it yet, there is as much bad advice as good available online. Let me take this opportunity to explain the condition to you.
Fibromyalgia is not just Fibromyalgia!
There are many illnesses and conditions that Doctors and the public completely understand. unfortunately Fibro is not one of them. So what is Fibromyalgia? It is a syndrome, meaning that rather than being a disease it is a collection of symptoms. Diagnosis usually takes at least six months because there is no test for it, the doctors have to rule out other conditions. You can find out about my journey in this post. To make things even more complicated, there are a great deal of symptoms and not everyone has the same ones. I have explained more about this in the post: Fibromyalgia is not just Fibromyalgia.
Who does Fibro Affect?
90% of people with Fibromyalgia are women, this led me to be curious about what it is like for a man living with the condition. I reached out to a few and you can see their answers in my blog post Men with Fibromyalgia. However, the syndrome doesn’t just affect the person with Fibro but everyone around them. Michael kindly wrote this Husband’s view of Fibromyalgia. He is supportive and very clued up about Fibro, if your other half is struggling to understand I suggest directing them to this post.
A Chronic Illness not a Disability
There has been a big push to get Fibromyalgia recognised as a disability. While I see that as a positive step in the right direction, it is just that, a step. We can cater for disabilities to a certain degree. There are disability aids, I have some of these myself. We can adapt buildings and equipment. I could go on. Please do not think I am dismissing disability, far from it, I could not imagine my life if I were to lose my sight or all use of my limbs. I want to explain that many disabled people can adapt and live a relatively happy and healthy life. When you ask what is Fibromyalgia? Imagine if you live with a chronic illness you may have as many healthy days in the year as a healthy person has sick days. I explain this in more detail in the post I’m not disabled I’m chronically ill.
Who are spoonies?
If you follow me on Instagram, you may notice I often use the hash tag Spoonie. This label the chronically ill community gives to ourselves comes from the Spoon Theory, an explanation first created by Christine Miserandino on her blog, But You Don’t Look Sick, which sadly seems to be inaccessible. In brief, the story explains that if spoons represented the energy and ability each of us have per day. How somebody with a chronic illness can use up their spoon allowance doing the activities a healthy person does in the morning before leaving for work.
You may have heard of the condition Chronic Fatigue Syndrome (CFS), the two syndromes overlap. The simplest way to distinguish them is that Fibromyalgia causes pain as a primary symptom and exhaustion as the secondary one. CFS is the other way around causing exhaustion first. I have heard of people recovering from CFS after varying degrees of time. There is little sign that people have recovered from Fibro, although there are good and bad days. In 2016 there was an awareness campaign under the banner Millions Missing. You can read more about this on the ME Association website.
Fibromyalgia alongside other symptoms
When dealing with a syndrome that has many symptoms it’s difficult to know if a new symptom for yourself is a part of the Fibro or something else. I have a series of posts focussing on some frequent symptoms that fellow Fibro Warriors experience. Why Fibro Warriors? This self titled label came into being because although Fibromyalgia has stripped so much from our lives, many of us will not disappear and let our health dictate the whole of our life, we fight to maintain some small happiness in the face of all we have lost.
If you are experiencing a new symptom, it is always worth checking with your doctor in case they do not relate it to Fibromyalgia. It is always better to be safe than sorry, even though I know Doctor’s appointments are not always easy experiences.
What is a Fibromyalgia Flare-Up?As I mentioned earlier, when you have Fibro you can have good days and bad days. Flare-ups are the bad days, when your symptoms are at their worst. These flares can last a day or stretch for weeks on end. I experienced my longest flare-up from January to April 2019, the longest one I have had in three years. You can read a longer explanation of flare-ups in my post, What is a Flare-Up?
Fibro and your Environment
People living with Fibromyalgia often become sensitive to their environment. Strong smells affect certain people and extremes of temperature can cause problems. Even the clothing touching your body can become painful. It is very difficult for somebody without this complication to understand the impact it has on your life. I have written more about this subject in the post, Wellbeing and your Environment.
Pacing Yourself as a Spoonie
Many of the triggers of flare-ups are beyond control, like changes in the weather or attending appointments. Avoiding stress is vital because it is a huge cause of flare-ups. Another frustrating cause is doing too much on a good day. We have all been there, especially in the early days. You have felt so bad for so long then you suddenly wake up feeling well, instinctively you try to do as much as you can because you don’t know how long this will last. Then bang, the next day you feel horrific. I have written a post about pacing yourself with some suggestions for getting the balance right.
So, What is Fibromyalgia?
I hope this post has helped you to answer the question and understand more about Fibromyalgia. I have many more articles on the subject in the Fibromyalgia category of the blog. If you have any more questions, please ask in the comments, I will do my best to help. If you have enjoyed reading this, I hope you will share the article on social media so your friends can find it too.