My Top 5 Difficulties with Fibromyalgia
By Sarah Warburton
“What do you struggle with most, living with fibromyalgia?”. Over the festive period, a family friend asked me this very question and it was difficult not to respond with “Well, just about everything really” because, as we all know, life with fibromyalgia can be hard and fraught with difficulties. I’ve no doubt that every fibro warrior could discuss this topic for a long time and that everyone will have their own list of what they struggle with the most. But here are my top difficulties, frustrations and some of the things I wish I’d been prepared for at the beginning of my fibro journey.
1 – Managing a Complex Condition
Classed as a syndrome because it consists of a group of symptoms, fibro can be very hard to manage. Symptoms often include pain, fatigue, cognitive issues (AKA fibro-fog), Irritable Bowel Syndrome (IBS), headaches, insomnia and a multitude of others. The diversity of these symptoms can mean that what may help one symptom, can easily exacerbate another. Alternatively, struggling with one symptom can stop you from doing something which could help another symptom. For example, I love swimming and find that it helps my pain tremendously. But sleep issues mean that I often can’t drive the 8 miles to the pool as I am so sleep deprived that I could be a danger on the road. To combat this, I have gentle exercise that I can do at home (usually bed yoga) even when I’ve barely slept. But I don’t find that yoga helps my pain half as much as swimming does, nor do I enjoy it as much. So it is frustrating that one element of fibromyalgia (insomnia) stops me from doing something (swimming) that would help with managing another symptom (pain).
Added to all of this is the fact that symptoms often vary on a day to day basis, making planning activities really hard as we never really know how life will be tomorrow, or any other day
When newly diagnosed, I found it helpful to keep a daily diary of symptoms, food, exercise and medication so that I could try to build up a picture of what made me feel better and what made me feel worse and understand the symptoms, their severity and their impacts upon my daily life. I’m now in a place whether I understand the majority of symptoms that come my way and have a fair idea of what causes such and such a symptom to flare up, although fibro is still capable of springing unwelcome surprises from time to time!
2 – Finding What Works
Finding what works to help you live your best life with fibromyalgia can be slow, painful and expensive because of the complexity of the illness and number of symptoms. It took me around 2 years working closely with my GP to find the exact combination of medication to help me, rather than give me side effects as bad as fibromyalgia in the first place. During that 2 years, some of the side effects I experienced were truly frightening but eventually I arrived in a place where I felt that the medications were helping me. I am very lucky to have a lovely, approachable GP who is knowledgable about fibro and supported me every step of the way but I know not everyone has this. Nonetheless, it can take a lot of perseverance to find what works for you, so it’s important to be prepared for this.
Aside from medication, many fibro warriors use a variety of other approaches to managing the conditions such as:
• Exercise
• Complementary therapies - for example massage, acupuncture, aromatherapy, Alexander technique, meditation
• Vitamins and supplements
As everyone experiences fibromyalgia symptoms differently, it is a case of trying different approaches one at a time to explore what works and what doesn’t for you. What helps one person, could make another person worse. For example, I know that a lot of people do make use of acupuncture to manage pain and yet I’ve tried it several times with different practitioners and each time have ended up in a pain flare
What makes all of this a struggle is the amount of time, money and energy it can take to try some or even all of these to evaluate what works for you and what doesn’t. It can be extremely frustrating and it’s only been in the past couple of years that I’ve managed to put together my own toolbox of things that help.
3– Isolation
Not only can fibro cost you friends because of the invisible and chronic nature of the illness, but isolation can also occur because it is often simply too painful or too exhausting to go anywhere to meet people and join in with activities. Over time, invitations often decline since the chances are you’ll say no anyway and so the isolation deepens.
It can also be hard to connect with other people fibro warriors for the same reasons, but technology can be a boon and engaging online with others who are in a similar boat can certainly help with those feelings of desolation.
In contrast to most of the population, I found that Covid lockdowns have helped me feel less isolated. Why? Because so many activities that I would have loved to have gone to but would never have managed to drive or take public transport to went online. This has meant that I have been able to join in with more groups online than I could ever have dreamed of attending face to face, including yoga classes, a book group and meditation classes. True, it isn’t the same as being in a room with others but it is much better than being excluded from these activities due to the struggles of daily life with chronic illness.
4 – Acceptance
It’s a pretty safe bet that none of us ever envisaged living with a chronic illness. So the chances are that the lives we lead now are a million miles from the lives we thought we might lead. I know that’s certainly the case for me and it took me years to accept the difference between what I thought my life would be and how it has actually turned out.
For several years after diagnosis, I would routinely taunt myself comparing my slow and seemingly humdrum life with the upward trajectories of friends and co-workers, wishing that I could be like them, marching steadily up the corporate career ladder, without a health worry in the world.
It was only when I had counselling and a course of Cognitive Behaviour Therapy (CBT) from my local NHS mental health service that I began to untangle the illness, what I really wanted out of life and my core values. From there, I worked upon exploring different things that I could do with fibromyalgia and setting myself realistic new goals and it was only when I got to this point that I began to accept the illness and what it means for my life. Acceptance most certainly isn’t giving up and giving in to the condition, it’s really about embracing where you are right now and how you can move forward. There’s a lot of excellent information on accepting chronic illness online, so it can be worth doing your own research if this is something that interests you.
5 – Other People
Some people are unable to process the idea of an invisible, chronic condition. The fact that people with most chronic conditions will likely not recover seems too difficult to process, that health conditions can wax and wane is too hard to comprehend, as is the fact that outwardly, we look pretty OK. It’s difficult to get others to understand that just because we can do something one day, we may be unable to do that very same thing the following day.
And so all of this can lead to us being accused of faking it, being lazy, or doing nothing to help ourselves and over time, friends can fall away and family rifts can occur.
On top of this, there are people who will send us information about various outlandish remedies they’ve come across online or stories of so and so who took such and such a supplement, or tried a certain type of exercise, or ate a particular food and were then cured. And what’s often implied here is that if we then don’t follow said advice, then we deserve to carry on being sick.
I wish I could tell you about a smart, constructive way in which I’ve dealt with all of these scenarios, how I’d managed to convince these people that fibromyalgia is real and that I do suffer in some shape or form everyday. But the truth is that I have far fewer friends than I did pre-diagnosis and I have family members with whom I’m no longer in contact because of what’s been said to me and about me, in relation to my health. Simply put, I have just cut those people out of my life and concentrate what little energy I have on those who do genuinely understand me and understand fibromyalgia.
And so that concludes my top 5 fibromyalgia difficulties. It has been a long road to get to where I am now in my fibro journey and there is always more to learn. Difficulties are certainly part and parcel of living with chronic illness, but if there is an upside to working through all of this, it’s that you do get to understand yourself as a person much more and develop a lot more strength and confidence in your own coping ability and management of your own health.