Things I wish I had known about fibromyalgia, and how to live with it

To put this into context, I was diagnosed about 10 or 11 years ago now, and it was a diagnosis reached by excluding other things that could be causing my symptoms. I had X-rays and MRI scans, I had something very unpleasant called electro-conductivity testing to rule out multiple sclerosis, and then I was told that I have fibromyalgia, have this leaflet, please close the door after you. I was basically forced to deal with it myself for a long time, and I’ve learnt quite a lot about how to manage myself. I hope what I learnt can help you.

What is fibromyalgia?

Fibromyalgia means “muscle and nervous pain”. Current research suggests that it is a dysfunction of the central nervous system (that is, the nerves that tell your brain what you’re feeling), so nerve signals are misinterpreted as pain.

Symptoms include, but are not limited to:

Widespread muscular and nervous pain, fatigue, headaches, cognitive dysfunction (problems concentrating, poor memory, slow or confused speech) extreme sensitivity of the skin, extreme sensitivity to pain (as in, you accidentally catch your finger on the cupboard door, it hurts really badly and it still hurts 2+ hours later), muscle stiffness after being still for a while, muscle spasms, poor sleep quality and waking up tired, dizziness and clumsiness, feeling too hot or too cold (because the body isn’t able to regulate it’s temperature) sensations like tingling, numbness, prickling or burning in hands and feet (and maybe other areas), anxiety and depression.

That’s a lot of symptoms, and chances are you don’t get all of them, and other people will be affected differently.

Stress

Stress makes fibro worse. It makes the pain worse, it makes everything harder to cope with. It’s not just me saying that, it is a scientific FACT. I know if I get upset, stressed or angry, my pain INSTANTLY increases. I can’t watch horror films anymore, every time there’s a jump-scare I feel like I’m being showered with needles! So, it’s really important to try and keep your stress levels down. Find hobbies that help you relax. Choose to be calm and happy! It will really help!

Pain

How you think about your pain needs to change. It isn’t a matter of “powering through” and having to “man up”. If you have fibro, you have something which means your nerves are nearly always screaming at you that stuff hurts. LISTEN to your body when you exercise. If it tells you doing something hurts, slow down how you are doing it. Slow your movements down, focus on how you feel and go gently. If it burns or hurts more than you are prepared to deal with, leave it for the day. Get some rest, take some paracetamol and ibuprofen and relax! If the pain gets too much – as in, can’t eat because feel sick because pain, or can’t walk/do daily tasks anymore, go see your GP about pain relief. It took me 8+ years to find a doctor who took me seriously and understood the condition, and gave me the pain meds I need to function day to day.

My current meds are: 2 x cocodamol (30mg codeine/500mg paracetamol) x 4 times a day. 1 x 100 mg gabapentin twice a day. 1 x 100mg sertraline (anti-depressant) twice a day. 45mg mirtazapine at night. That’s a lot of anti-depressants because I also have Bipolar Disorder (used to be called manic depression). Gabapentin has been an absolute godsend for me! It’s really helped tone down the constant prickly/tingly sensations

Sleep

Sleep is incredibly important. When folks with fibro don’t get enough sleep, or don’t get enough deep sleep, everything hurts so much more. Fibro can disrupt your sleep cycle so you don’t go into the deep sleep your body needs - so SLEEP IS IMPORTANT! If you sleep well, you will be so much more able to deal with everyday pain. So try your best to get a good night’s sleep. Create a bedtime routine – go to bed at a decent time (around 11pm at the latest) after a warm bath or shower. Have some extra-soft pyjamas or loungewear to get into after coming out of the bath or shower. Have a hot (non-caffeinated) drink e.g. herbal tea, hot milk, Horlicks or Ovaltine. Don’t watch TV in bed! Do not spend too much time on tablets, phones etc past 9pm (blue light from screens will make you feel more awake, use a blue light filter if it’s built into your devices).

This may make you feel like an old fogey, but SLEEP IS IMPORTANT! Like, super duper important! And you need to do everything you can to make sure you sleep well. However, and this is the real kick in the teeth, sometimes you can do everything right and still wake up exhausted. If that happens, talk to your GP about medication to help you sleep. There are various anti-depressants that are commonly used for this, like amitriptyline (which I used to take, and my sister takes now), and I am currently on mirtazapine to make me properly sleepy. There’s a happy side effect in that these drugs also help to lessen nervous pain.

Fatigue

As you will have noticed by now, fatigue isn’t just feeling tired. It’s feeling exhausted, like you haven’t slept for a week, and you can barely do anything before you have to stop. On days like this, you only have a little energy, and you have to be careful how you spend it. Figure out what HAS to be done (e.g. need to do the laundry so you can have clean clothes tomorrow, dishes need to be done because you have nothing to eat off and you are hungry), and what can wait until you’re feeling better (e.g. vacuuming). You can’t do everything at once, so take it one task at a time slowly and at your own pace. Give yourself breaks if you need it. It’s important to cut yourself some slack and allow yourself to come back to it later. Be kind to yourself. Ask for help if you need it. No one wants to see you struggling with something, or in too much pain to cope.

Cognitive dysfunction (a.k.a. fibro-fog)

Some days, your head might feel like it’s been stuffed with hot cotton wool. You can’t think straight, and you can’t find the words to properly express yourself. You will probably forget things that are a change from your normal routine. People may ask you if you’re on any drugs! Unfortunately there’s no treatment for it, but you can find ways to deal with it.

Use a calendar or paper diary – writing things down may help you to remember them better. Make lists of important things WHEN YOU REMEMBER THEM – you can’t rely on yourself to remember them another time. You have to try and leave yourself reminders. Future you is forgetful, so present you has to plan for it! And if you forget something important, be prepared to apologise!

Food

I’m know it’s very tempting, when you’re in pain and tired, to just order some delicious food delivered to your door, but you’re gonna find it very hard to lose weight when you can’t do lots of cardio, so it’s best to eat healthy most of the time. Keep frozen chopped onion and garlic in the freezer, and tinned tomatoes and pasta in the cupboard, so you can knock up a good meal with minimal effort. Try to have a folding stool in the kitchen for you to perch on whilst cooking. Make it easy to eat well, and save the left-overs for lunches!

Exercising

You’ll probably find it very hard to keep exercising like you used to. Try to replace high impact exercise with something low impact like cycling (not spin class!) and rowing. Maybe try something like yoga or pilates (I know, it’s old lady stuff, but it’s still good for you!), low impact stretching and general core work will be good for you.

DON’T do exercise classes where you will get constantly yelled at to go harder. Don’t let other people set your pace! Let your body tell you how fast you can go!

In general, don’t let other people set your pace. Sometimes you will need to go more slowly, if you feel unsafe on your feet (as in, knees might give out and you might deck it, right in the middle of the street) consider getting a stick. It took me years to finally admit that I needed one, but it has seriously helped me. My sister went through the same thing a few months ago, and I told her: it isn’t you admitting defeat or failure, it’s you doing what you need to do to help yourself. Plus she now has something to trip people up with if she doesn’t like them!

And to anyone who says that fibro isn’t real, or is all down to lifestyle factors, I say this: me, my sister and my aunt have all been diagnosed with fibro independent of each other. And I have reason to believe other members of my family might be showing symptoms too! There is clearly a big genetic component at play, so blaming people who can’t exercise for being overweight is counter productive as fuck.