Life doesn't have to be on hold when living with fibromyalgia. Here are Rob Obey's 3 tips for managing daily symptoms.
People often ask me if I have any coping strategies to help me live with fibromyalgia. Although I haven’t got any strategies guaranteed to work every time, I have found three ways to make living with fibromyalgia easier. I hope they can help anyone who wants to use them.
What is fibromyalgia?
Before I share my tips for coping with fibromyalgia, it may make sense to talk about some of the symptoms I experience.
According to the NHS website, people living with fibromyalgia may also experience symptoms such as:
- Increased sensitivity to pain
- Extreme tiredness (fatigue)
- Muscle stiffness
- Difficulty sleeping
- Problems with mental processes (known as "fibro-fog"), such as problems with memory and concentration
- Irritable bowel syndrome (IBS), which can cause stomach pain and bloating
Fibromyalgia Action UK (FMA UK) describes the condition as being chronic and of widespread pain and profound fatigue. The pain tends to be felt as diffused aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.
The fatigue can range from feeling tired to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.
What causes fibromyalgia remains vague. But, there is a widespread consensus around the symptoms I listed above.
As patients, symptoms are what we have to learn to live with.
Accepting my fibromyalgia diagnosis
When I received my fibromyalgia diagnosis, my first step for coping was acceptance.
Before diagnosis, it’s not unusual to be totally confused. I displayed most – if not all – of the symptoms described above, but there wasn’t a medical explanation at the time.
With fibromyalgia, finding the right diagnosis can be difficult. It was almost a relief when I was finally diagnosed, as it proved it wasn’t all in my head.
Once you accept your diagnosis you can then learn, often by trial and error, how to live with it.
Coping strategies for living with fibromyalgia
1. Listen to your body
After you’ve received a fibromyalgia diagnosis, my first suggestion is listening to your body. When my body tells me it’s time to rest, I do it.
You can try to be “brave” and to “push through”, and convince yourself it’ll be okay to rest later.
The fact is, it’s not “brave”. Resting later when your body tells you to “rest now” simply won’t work.
I find that my body has an in-built preservation mode. When it tells me to rest, it isn’t advising me. It’s more of a command.
Experience has taught me that if I ignore my body, I always pay for it later.
For example, I often get tired of being at home, so I’ll go out and take a short walk. During the walk, I feel fine and I enjoy myself. Yet, afterwards, I’m usually laid up in bed for a couple of days.
What did I achieve other than making my fibromyalgia symptoms worse?
I had to find an alternative to walking without physical exercise. It may not work for everybody, but using a mobility aid such as a wheelchair or scooter helped me get outside more often.
2. Learn to say “no”
In my opinion, this is the most challenging strategy. It’s learning how and when to say “no”.
I always feel guilty when I say “no” to something or to someone, but I have learned to manage my time demands.
Of course, we all want to do things with our family, especially when we have young children. Yet we need to learn when to conserve energy and to only use it on activities that matter.
Fibromyalgia is unpredictable. From one day to the next you simply don’t know how you are going to feel. This can make planning difficult and it’s not uncommon to need to cancel plans at the last minute.
My tip for this is to explain to family, friends and children that you sometimes don’t feel well enough to participate.
When you do feel well enough to join in, try to give the activity and whoever you’re doing it with your undivided attention.
Finally, try to learn to be spontaneous. That may sound like it’s going against the grain from other advice on how to manage fibromyalgia. I’ve found that if you can seize the moment when you’re feeling well, it makes up for other activities that you’ve missed.
3. Practice the art of distraction
My final coping tool is to find a distraction whenever I can.
Living with fibromyalgia can be all-consuming. It lurks in the background of every moment of every day. Learning to distract yourself from your thoughts and pain is a useful and effective tactic.
If I’m not feeling overly tired or experiencing “fibro-fog”, I like to explore new hobbies. This has led me to try my hand at computer programming and learning about 18th century Liverpool pottery.
The truth is, I find both subjects challenging. Both of them need concentration and small bursts of action. When I’m committed to a hobby, it’s all that I can focus on. On the plus side, I’m able to forget about my fibromyalgia symptoms for short periods. And trust me, those periods all add up!
So, I would encourage you to find a hobby that interests you. What can you do, learn or use to distract yourself?
Fibromyalgia is often misunderstood, it can be misdiagnosed, and its impact is almost always underestimated.
If you receive a fibromyalgia diagnosis, you can still be in control.
Learning to cope with fibromyalgia isn't easy. It’ll take time to figure out what works best for you. Rest assured, though, you can learn to live with fibromyalgia, and you will learn to cope in ways that benefit you.
NPS-IE-NP-00189 January 2021