Frequent readers of this blog will know that I have several chronic health conditions - one of which is fibromyalgia. For me, getting my diagnoses was an absolutely terrifying process, and I remember thinking “THIS DISEASE SHOULD COME WITH A WARNING LABEL!” The doctors and therapists gave me bland advice like “take painkillers” and “remember to rest” but left out all the fun little details that would have actually helped me manage my conditions better from the outset.
This post is the first in a new series for the blog - it’s the tips, tricks, warnings and advice from people with chronic health conditions - all collated for the people who follow them along the path. Thank you to Frances, Steph and Sylvia for their contributions to this piece.
Wtf is fibromyalgia anyway?
At its simplest, fibromyalgia (aka fibro/fibromyalgia syndrome/fibromyositis) is a long term condition that can cause pain all over your body. In addition to the pain, you might experience fatigue, muscle stiffness and cramping, difficulty sleeping, headaches, and irritable bowel syndrome. A lot of people also experience “fibro fog” - problems with alertness, concentration and memory - which can last anywhere between several hours and several days.
Women (and people assigned female at birth) are 7 times more likely to get a diagnosis of fibromyalgia. The exact causes of the condition are not known, but it can be linked to physically or emotionally stressful events. For many people, they experience fibromyalgia alongside other conditions (for example Lupus, Multiple Sclerosis, Rheumatoid Arthritis and Type 2 Diabetes).
Getting a diagnosis of fibromyalgia can feel like a battle. Personally, my doctors pinned all my issues on stress, lack of exercise, my weight, hormone issues related to the pill, my marriage and my anxiety for about 12 years, before I could get someone to actually listen to me about my pain levels. Lots of people with fibro feel like they are thought of as “lazy”, “crazy” or “overdramatic” (and come to believe these things about themselves too!)
There is no blood test that can identify fibromyalgia, and often it is given when many other conditions have been excluded. The symptoms vary from person to person and are similar to several other conditions out there (and can occur at the same time as some of them!) Some doctors assess the extent of the pain by applying pressure to “trigger points” around the body where the pain is likely to be at its worst.
The most commonly used criteria are:
Severe pain in 3 to 6 body parts, or milder pain in 7+ body parts
Symptoms staying at a similar level for at least three months
No other reason for the pain has been identified.
Keep good records of what you experience. If you've got a lot of information about what life is like for you, it adds credibility (and gives you something to refer to when you wonder if you're making it all up - you aren't!) You could chart your pain level every day, and what symptoms you experience.
Give us the advice already!
Educate yourself about fibromyalgia, using reputable sources. The NHS website, Fibromyalgia Action UK and Pain UK are great places to start your search.
Be critical about what you do read - there’s a lot of wacky information out there, and you’ll need to use your “inner queen” to figure out what’s helpful and what’s nonsense.
You’ll hear a lot of advice out there about people who have “cured” their fibro with yoga, copper bracelets, running, elimination diets, personal training etc - take this with a pinch of salt. It might have worked for them, but there is no magic approach that would help everyone. If there was, we’d all be doing it!
Ask for referrals to specialist pain clinics, physiotherapists and Fibromyalgia Specialists (if your area has one). Your GP may not be up to date with their understanding of fibro, and may use out of date approaches.
Don’t let doctors “fob you off” - just because you have fibromyalgia, it doesn’t mean that everything your body experiences is fibromyalgia! If you are concerned about something your body is doing - go back to your medics and demand more testing.
Write down what you want to say before you get to every appointment. It’s easy to get flustered or railroaded by medics, so be clear about what you’re telling them and what outcomes you want from the session. Taking someone else along can help you get your point across (and remember what is said in case you get foggy mid appointment!)
Be mindful of your diet - try to eat healthily and avoid foods that can trigger symptoms. A dietician can help you with this.
Take your meds! If you have a lot of fibro fog, it’s easy to get muddled and miss a dose. You might want to consider pill organisers or arrange for your pills to be put into blister packs.
A lot of people with fibro can become stoic, only taking their medication when the pain gets bad - work out a pain plan with your medical team, and follow it. Don’t let it get to the point where you’re in agony!
You may be put on antidepressants, as they help maintain your mood and some can have a pain suppressing effect.
Get your vaccines (such as yearly flu shots) - partly because conditions related to fibromyalgia may make you more vulnerable to catching infections, and partly because having flu on top of a flare sucks ass.
Pain isn’t just managed through medication, there are also psychological and behavioural activities you can try which will help. Experiment with these, and find out what works for you.
Make sure you have a support network of people who understand what you’re experiencing. Support groups, online forums and patient groups can be great places to meet other people with fibro and chronic pain. Find places you can vent and places where you can be you (without thinking about your fibro).
Speaking of that last one, you might want to check out my Facebook Community Port in the Storm. Our community will help you handle the hard stuff, and change the things you refuse to accept any more. You’ll get a network of lovely and loving people, friendly ears when you need to unload, and practical strategies that will teach you how to take control of your own story. We’d love to have you there too!