The 6 Hardest Things About Living With Fibromyalgia (and How I Cope With Them)
Fibromyalgia is a chronic pain diagnosis categorized by being long term (typically lasting over three to six months), causing widespread pain, fatigue, and other symptoms. There is a wide range of symptoms which can be experienced to different degrees by each individual who has fibromyalgia.
Needless to say, fibromyalgia is not an easy disorder to live with. While I’m at a stage in my chronic pain recovery journey within which I have a high level of functioning and my symptoms are well managed, it’s still challenging to cope with my disorder on a daily basis. I wanted to share the six aspects of living with fibromyalgia I find most difficult, and how I cope with them.
1. Fibro fog
“Fibro fog” refers to a symptom of fibromyalgia that causes cognitive difficulties. It often literally feels like thinking through a fog. Fibro fog can affect memory, the ability to focus or concentrate, and can even make it tough to formulate what you want to say. This is an aspect of living with fibromyalgia that I find particularly frustrating and difficult.
How I cope: I cope with fibro fog by using humor. I try to see the funny side when I misplace something in a random part of the house (for example leaving my mobile phone in the fridge) or when I say a word which is not even close to what I’m trying to say! By giggling with my husband, it can ease the frustration and help me to take it with a pinch of salt, as the saying goes.
I also use notes and lists to keep track of what I’m doing, what tasks need to be done, and to remind me of important events!
Fatigue is incredibly difficult to cope with. With pain, I’ve learned that it won’t actually harm me and that if I pace my activity and use other coping strategies, most of the time I can find ways to function through the pain. On the other hand, when my fatigue is so bad that I can’t think or can barely get out of bed, it’s not something I can function through.
How I cope: I take regular breaks and do my best to keep a regular sleep schedule to give myself as much energy as possible. If I have a bad day, I’m lucky to have a very understanding support system. I work from home (and with some really supportive people) which allows me to rest when I need it and make my own schedule, so I can go back to bed if I’m really struggling.
3. Others not fully understanding
It’s really tough when other people don’t understand what you are going through. It’s especially hard when it comes to loved ones when you’ve tried to explain it to them, but they just don’t quite get it. This can feel really isolating and frustrating.
How I cope: I try to remember that my loved ones care and that they’re doing their best to understand. If there are people who are negatively impacting my recovery journey despite good intentions, I set clear boundaries. I make sure to connect with others who are going through the same thing as me through social media, so that I have that deeper understanding I’m seeking.
4. Not always being able to do what I want
I’m a very headstrong and determined person, but fibromyalgia doesn’t care about my determination. I find it really hard to cope when there are things I’ve set my mind to, and I might not be able to complete them in the time frame I had in mind or exactly as I had envisioned.
How I cope: I remind myself that I can reach my goals, but sometimes I just need to be more patient and work around my symptoms.
Not being able to sleep due to pain (painsomnia) can be difficult. I’m usually tired enough with the fatigue alone, but struggling to sleep on top of that can really make me wiped out.
How I cope: I keep a regular sleep schedule to help me sleep as best as I can. I ensure I’m as active as possible during the day to help wear my body out properly and make it easier to drift off to sleep. Winding down as it gets closer to bedtime is helpful, for example reading a book or doing some skincare (like a face mask).
6. The unpredictability
I don’t do well with the unknown. By nature chronic illness is unpredictable. Even if your symptoms are well-managed and you’re doing your best to cope, sometimes a flare will come along or a new symptom will develop. This can sometimes lead to having to cancel plans with others or re-organize your schedule, which can be annoying to say the least.
How I cope: I try to accept that life itself is unpredictable and that even if I didn’t have a chronic illness, I wouldn’t always know what was around the corner. I try to roll with changes and understand that I’m doing my best. When I have to cancel plans with others, I do my best to explain and apologize so they understand. If they don’t understand, I remind myself that it isn’t my fault and I’m doing my best to take care of my health.
Despite these challenges, I’ve come a long way on my journey to recovery from my chronic pain. I know that I can continue to manage my symptoms and gradually overcome them. I have hope for the future, and I’m proud of myself.
Getty image by Michael Kuby / EyeEm