What is Fibromyalgia? Who are Spoonies?

If you have arrived here from a search engine I am guessing that you or someone you know might have been diagnosed with Fibromyalgia, or are considering if you have it. If so you have my sympathies.

What is Fibromyalgia?

So what is Fibromyalgia? I hear you ask. As well as it’s full name, the syndrome is sometimes shortened to FM and within the community it is regularly shortened to Fibro.

When Fibromyalgia 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.

Chronic Fatigue Syndrome (CFS)

Chronic Fatigue Syndrome is a separate condition to Fibromyalgia although the symptoms heavily cross over and many people do have both. I have often read that the conditions are differentiated by the most profound symptom. If pain is the worst symptom then Fibromyalgia is likely to be the primary diagnosis, where as CFS is led by exhaustion.

It is important to point out at the is point that both conditions share symptoms with an awful lot of other illnesses and syndromes. It is always important to get a medical diagnosis. A doctor needs to screen from other treatable conditions before they will give a diagnosis like this.

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 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.

Medical Improvements

Thankfully the medical profession is gradually learning more about Fibro, even in the last five years new research has brought information to light. I see the NHS no longer stipulates you need to have had symptoms for six months on their website.

A Fall back Diagnosis

Due to the fact that there is no specific test for Fibromyalgia and therefore all other possibilities have to be ruled out first, it is sometimes talked about as a fall back diagnosis. Because of this, the diagnosis can still be incorrect so your Doctor may want to do routine tests as time goes by.

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.

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.

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. The post Fibromyalgia and 6 Associated Symptoms will give you and overhead of the most common ones.

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.

There is no cure

As things stand there is no cure. It is a regular occurrence that you hear people talking about how they cured it. If this is the case one of three things is likely happening.

• They didn’t have Fibromyalgia, they had a different condition.
• They are in a good period and the symptoms are in remission.
• They are praying on the vulnerable and trying to sell you something.

I’m going to be honest with you, I may be very unlucky but in terms of being in remission – so to speak, I have had maybe the odd period of one or two days at a time in the last seven years. It is very rare to not have any of my symptoms in a day.

In terms of people trying to sell you something. Don’t get me wrong, there are many credible people who live with Fibro who have written books or produced corses etc. to help people live as well as they can with the condition. I am not talking about them. I am referring to the snake oil salespeople who state they are completely cured by taking x or y supplement.

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. 

Books and Covers

Since my diagnosis I have read so many opinions from people (sadly some of them have been medically trained), that have passed judgements or drawn conclusions about people who have chronic illnesses like Fibromyalgia. here are just a smattering:

• It is because you are overweight (slim people are diagnosed too)
• You don’t look like you are in pain (brave face anyone?)
• A change of diet? (tried them all)
• Exercise helps (yes it does if you include walking across a room or climbing the stairs)

Those are just a small handful of assumptions that people can make. Liking with a chronic illness is not easy. You might want to check out my post about Fibro or Faker to see more thoughts on the subject.

Are you in the UK?

If you happen to be based in the UK I have put together Fibromyalgia in the UK: Comprehensive Advice, where I hope to give you all the information you may need to begin to grasp what life may begin to look like.

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.  

Until next time,
Gentle Hugs,
Susan