I was first formally diagnosed with Fibromyalgia in November 2017 but I had struggled with the many symptoms for most of my life. As a teenager I was told to stop being lazy and to push through and as I got older that narrative was continued by those closest to me.

Fibromyalgia is usually diagnosed by exclusion meaning that all other conditions that have similar symptoms and that have formal tests are ruled out thus leaving Fibro as the only diagnosis. Conditions with similar symptoms include Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Sclerosis (MS), Rheumatoid Arthritis (RA) to name three.

For me, the biggest frustration is the sheer unpredictability of the condition. This means I can do all the right things to be managing the symptoms and my body will still just decide to shut down for no rhyme or reason. But I have found a few things that do help me keep the peaks and troughs more stable so that when flare ups happen they aren’t quite as severe or long lived.

Food

This will vary for everyone but for me I have cut out cows milk and drink oat milk in my tea and coffee. I love coffee but caffeine is something that can trigger Fibro so I now limit myself to a max of 2 cups of caffeinated coffee a day and this in the morning. I have reduced my intake of nightshade veggies such as tomatoes and bell peppers as these are linked to increasing inflammation in the body. And the hardest one for me, reducing my intake of sugars in particular refined sugars. I have an incredibly sweet tooth. I am now almost teetotal as alcohol is a very definite trigger for me. I wasn’t a big drinker before Fibro so hasn’t be too hard not to do but there are occasions when a nice G&T would go down a treat so on very very very special occasions I may imbibe.

Pain relief

There isn’t much by way of medication that can help with pain relief for me. Some people have found that gabapentin or pregabalin are helpful. These are nerve blockers used to treat seizures that have also been found to help chronic pain. I tried pregabalin but had a rather adverse reaction including hallucinations, dizziness, tinnitus (which I still have a year on) and my mood tanked. So I went back to what I know helps take the edge off which is prescription strength cocodomal.

Non-medicinal things that help me are:
1. Heat: Hot water bottles, hot baths, electric blankets, heat patches all offer some relief when the pain gets really bad
2. Tens machine: this is great when I need instant relief and have things to do as I can wear it even when I am out.
3. Pilates
4. Massage

Exercise

OK so I know this one is quite controversial so if you are a Fibro Warrior please keep an open mind here.

One of the things that can offer relief is movement but if you have Fibromyalgia this is a double edged sword because too much movement and you will push yourself into a flare up but we also know that not enough movement means we seize up making moving again more painful and thus starts a vicious cycle. The key is finding exercise that works for you.

For me this was hard as before my diagnosis I was fairly active. I had a gym membership, enjoyed spin classes and had even run a half marathon. I did research to find exercises that had low impact on the body but would still give me a workout and that is when I discovered Pilates. I started classes in mid 2019 and it was the main preparation I did for my Mount Kilimanjaro challenge in early 2020. I stopped going to classes for a while at the end of 2021 to mid 2022 and definitely felt the difference in my mobility with an increase in my lower back pain so have started going again. I have been going to classes near home that include both mat work and reformer and I am loving it. In only 1 month of being back I am already feeling the difference.

My advice is to find what works for you without overdoing it. Start small and build. It won’t stop the flare ups or pain completely but it will hopefully make the time between flare ups longer and when they do hit, short lived.

Self care

Self care is becoming quite the buzz phrase recently especially in light of the recent pandemic. I have learnt over the last 4 and a bit years since my suicide attempt that self care is not selfish. In fact it is the best and most selfless thing you can do. If you’re not looking after yourself, you won’t have anything to give to others. A friend told me you should be giving out of the overflow not the overdraft.

One of the things I now do regularly is have massage treatments. I have a wonderful therapist who comes to my home every 2 weeks. I alternate between a full body massage and reflexology for each visit and both are great at helping me to reduce stress and release tight muscles.

This one is a bit “silly” but I have short hair. Yip, sounds silly right? But for me washing my hair is a right pain so having shorter hair means it needs to be washed less often and I can get away with just running my fingers through it rather than a brush (brushing is painful on the scalp). Plus it’s also easier to cover with a hat.

I have also spent time exploring my creative side by going to art workshops which has been a completely different way of spending time and relaxing.

Conclusion

Fibromyalgia presents differently in every person that has it. What works for me may not work for you and vice versa. So, find what works for you. Keep a diary, track your triggers and then find ways to reduce or eliminate those. Have an open mind and try things you may never have thought about trying before, the worst that can happen is that it doesn’t work for you but what if it does? Be gentle with yourself and ride the waves that come. Fighting them only takes more precious energy and the end result will be worse, with a flare up lasting longer and taking more time to recover from.